I am fearfully and wonderfully made

Relaxing at home

2012-01-26T17:30:00.000-05:00

Brayden has spent the week at home. He did not go to school. He stayed at home, his favorite place to be.

The pain seems to be going away. I do not think his legs have actually been in pain, it seems to be more from the incision site (and after I saw them, I do not blame him). Moving him around is a bit uncomfortable and changing the dressing/bandages is not pleasant at all; but once he is situated he seems to be just fine.

Getting a little bored yesterday...after playing with toys, watching movies and helping me around the house, Brayden tried out some other earphones. At the store, I found a pack that had an assortment of different headphones (all in one pack for $5, I do enjoy bargains). I scooped it up, hoping that one of the sets would work for him.

We tried and this seemed to work best. Of course the real test is using them out and about...goal is to help block out some of the noise around him that may be a bit overwhelming.

Sore Legs

2012-01-24T07:56:00.000-05:00

Brayden had a post-op appointment with the orthopedic surgeon. The botox looks good. The hamstring/adductor release...the doctor removed the bandages from Brayden's legs and I was surprised to see the incisions, much bigger than I realized, just over an inch on each leg. No wonder Brayden is uncomfortable.

We are keeping the incisions sites covered/bandaged for a bit longer (since they are just inside the diaper) to keep them as dry as possible.

We can return Brayden to his regular activities of the stander, leg braces, wheelchair, etc; to help keep those muscles loose. However, Brayden will not be going back to school this week as I thought he would. At this point he is still sore and very sensitive about his legs.

Brayden did come home with another contraption. A brace for his hips, oh fun. Something else to do, put on him, keep clean, irritate him...I mean, something else to help him. The doctor really wants us to use this for him when he is in bed.

Back to see this doctor in a month.

Dots and Incisions

2012-01-20T10:30:00.000-05:00

Arrive at the Inova Hospital 12:00 p.m. for check-in

Go back for pre-op about 1:30 p.m.
Surgery scheduled for 2:00 p.m.
Brayden was happy, wrapped in the warm blankets and even had a couple of power naps.

We waited until 4:15 p.m. before he was finally wheeled back.

Surgery for one hour.

Botox in both legs (the small red dots). Two incisions, one on each leg, sites for the hamstring/adductor release where the orthopedic surgeon cut parts of the muscle to release pull on his hips (the gauze covering).

One hour in recovery.

Brayden was kept comfortable with codeine and a new teddy bear friend.

Finally made it home after 8:00 p.m.

Up several times through the night for pain medications and gagging (I think having the breathing tube in makes his throat a little sore, which leads to coughing).

So far this morning he is doing pretty well. Does not want to be touched and those diaper changes are rough since the incisions/gauze are right on the diaper line.

Today is some pain medication and cuddling by the fire.

Then Monday back to orthopedic doctor for follow-up.

Today is Botox

2012-01-19T06:58:00.000-05:00

Brayden is off to the hospital today for Botox and another procedure.

An outpatient procedure at Inova Fairfax, he will be sedated but just for a short time. The Botox will be in his legs and the orthopedic surgeon will also be cutting a muscle (I believe his abductor) in his upper right leg.

This should help him be more comfortable and relieve the pull on his hips.

I will be back to let you know how it goes!

Clean up in 15 degree weather

2012-01-18T06:07:00.003-05:00

I know this has happened to many of you. Poop, explosion of poop, at the worst possible times.

Let me take you back to Sunday morning. Jeremy and Luke left for Luke's wrestling meet. Brayden, Carter and I were leaving a bit later for the meet, planning on getting there just in time for Luke's first match (he wrestles 3x in a met).

Brayden had just started an antibiotic for his infected g-tube site. This antibiotic brought with it explosive diarrhea. Which I cleaned up at 4:00 a.m....at least I thought I did until I started to get him dressed later in the morning and realized that me at 4:00 a.m. is not good. He still had residue on his back and legs. So into the bath, delaying our departure by about 15 minutes. Bath is done, Brayden is dressed and I am loading the car. Last thing in is Brayden. I pick up him and yes his diaper is full, very full. I managed to keep the clothes clean but not Brayden's linens, so I had to strip the bed. But I am actually grateful that he did this at home and not in the car or at the wrestling met...hopefully it was all of out his system.

We finally made it in the car, 30 minutes after when I wanted to leave. About an hour drive to a high school in Annandale. This school was an older school, which always has me concerned about accessibility. But Jeremy called me to let me know that around the gym entrance was a ramp. We arrived at the school and I drove around and around looking for the ramp. All I could see was stairs. Luke's match was moments away. The ramp was blocked from site by a catering truck. Once I finally located the ramp, I look for parking. Only ONE handicap space and of course it was full and every parking lot around the school was full. I decide that since it was 15 degrees outside, I would double park, unload Brayden and Carter, run them into the gym with Jeremy and return to park my car.

I quickly unload Brayden's wheelchair and rush to grab Brayden. I pick him up out of the car seat and guess what I found?! Another dirty diaper, that has leaked/exploded onto his clothes and car seat. I always have a change of clothes for him so I proceed to change him in the back of my car, parked in the fire lane, in front of the gym in 15 degree weather. Many of you have tried to peel off the poopy clothes without getting it all over the legs, head, hair, etc. It is not pretty. Brayden was screaming, perhaps he was freezing as he was laying completely naked in the tailgate of the car while I tried to wipe away all signs of poop (the smell still lingered). Now what to do with the dirty clothes? Roll them into a bag and pray the car does not permanently smell.

Finally I rush Carter and Brayden into the gym (that was packed beyond), we missed Luke's 1st match. I rush back out to park the car, realizing it still smelled pretty bad. I was tempted to just toss the clothes into the garbage but the sweater was too nice.

Then back to wrestling, out to lunch, then to a birthday party. Thankfully he saved his final dirty diaper of the day for that evening, when we were home.

Music Muffs and Wrestling

2012-01-17T11:06:00.000-05:00

The Music Muffs arrived (headphones in earmuffs). I downloaded some Mickey Mouse and Praise Baby songs to Carter's ipod...I had to assure him that Brayden was only borrowing it.

I had the Music Muffs ready for Luke's wrestling match. A gym filled with over 10 wrestling matches going on at the same time, screaming parents (nothing like a screaming wrestling parent, yikes, they scare me), coaches, announcers, etc. Perfect time to try out the muffs.

Getting the muffs on him was a challenge, he is not trusting of anything touching his head and face. Once in place and the music was playing, his eyes got big and he listened. I thought to myself, We have figured this out. He likes it! Aren't we just nifty. I was ready to buy him his own ipod. That thought only lasted a mere moment when he started to move his head. The music muffs would NOT stay in place; then would end up around his neck or on his face or wrapped around the top of his head...all getting him aggravated and upset. No matter what position we tried we could not get the muffs to stay in place. Between Brayden's tiny, pointy head and the head support on his wheelchair, the muffs were not happening.

He did like the music, so I am looking for other options...earbuds do not work for him, I am thinking earphones like the old school walkman ones.

Sweetness

2012-01-15T06:16:00.006-05:00

Brayden feel asleep on his side with his hand tucked underneath his chubby cheek.

Major points:

He got his hand up to his face.
He is touching his face and leaving it there without being upset.
He crossed over. Usually for him - left hand is for his left side; right hand is for his right side. They rarely cross over (part of the ACC).
He fell asleep like this. What?!
I have never ever seen him sleep like this.
It took a lot of self control for me not to just squeeze this sweetness.

Bad site

2012-01-14T16:13:00.000-05:00

Brayden G-tube area is looking bad.

This G-tube site he has had for almost four years. This hole in his body for four years (lots of tubes/buttons in and out of there). Never in four years have we had a problem with the site, not even a skin irritation.

The past several days his g-tube site, where the white gauze are, seems to be infected. Not skin irritation, something coming from the inside out. The gauze is covering were pus and blood are seeping out. It is really red and painful. He does not want us to touch it, clean it, turn it, etc...if we do, he cries and kicks his legs in protest.

The GI doctor and nurse took a look yesterday. We now have a prescription for Keflex, an antibiotic.

Brayden did amazing at the doctor. He was calm and would only fuss/cry when they touched a sensitive area. He did a good job letting them know where it was bothering him. I was so proud of him.

We will check back in with the GI doctor on Monday.

Black Lab

2012-01-12T18:57:00.000-05:00

We have a black lab...she is really more the boys' dog (and by boys I mean Jeremy, Carter and Luke). The dog follows them around and waits for them to come home for the attention.

The dog does pay attention to Brayden every once in a while; but for the most part she barely goes near him. She may gently come over to check on him, usually topping it off with a few licks to his face. Amazingly, he tolerates that...but if mommy touches his face he is not a happy camper.

For Christmas this year, Brayden's Great-Great Aunt (who only looks old enough to just be an aunt) had a blanket made for him with black labs all over it, even with a red collar like our dog.

Brayden has been wrapped in this blanket for his trip on his school bus. This week a therapy dog came to his class. This dog visits the classroom on Wednesdays and since Brayden just started going on Wed, this was his first time really interacting with the therapy dog. According to his teacher, Brayden did just fine with the dog.

When Brayden came home that afternoon, I parked him in the kitchen. I turned around to gather his things and when I turned back around our dog was laying her head in his lap, sniffing him. Our dog would not leave him alone. She was wondering where he had been...

On a side note, I was trying to consolidate some folders on my computer and found a picture of the two of them from a few years ago. Brayden was just one year old with our puppy we just brought home.

Music Muffs

2012-01-11T10:17:00.000-05:00

After some ideas from a few people, I have ordered some music muffs to help block out the noise. No, the muffs are not for me (as a mom there is no way to block out the noise). The earmuffs are for Brayden.We are willing to try anything at this point.

Is he on sensory overload? Maybe we can help block out some of the noise. I have ordered the muffs...now we need to get him an easy to use and see mp3 player. Something we could attach to his wheelchair. Anything ideas?

Brayden loves music. Currently a huge fan of songs from Mickey Mouse Clubhouse and ocean noises (it might be nice for only him to here those).

Hopefully he will love the music muffs...he may be the only one wearing earmuffs in the summer (oh I just got the There's Something About Mary, brother with the earmuffs...if you have no idea what I am talking about, you are better off).

Jill's House

2012-01-10T13:07:00.000-05:00

This is a respite facility here in Northern VA (just outside of Washington DC). It is the first of its kind in the U.S. It is an amazing place (Brayden is not quite old enough for it yet). But a special friend of ours is using it a lot and made a little cameo in the news video.

View more videos at: http://nbcwashington.com/.

And also an article on FoxNews.

Those moms of special needs kids know the need for repiste, rest and peace.

Not a Basketball Fan

2012-01-09T16:18:00.001-05:00

The screaming has continued.

He did it Friday night (but slept fine that night). Then Saturday. It started as soon as we picked him up from his bed. It continued that morning, then to the car, then to Carter's basketball game.

I tried to watch the basketball game from the hall while I walked Brayden back and forth. Then I found a vending machine...a very loud vending machine. I parked him by the vending machine to see if the noise would help calm him down.

It did...for about two seconds. Then back to the screaming. I walked him some more, he looked like he may go to sleep but obviously the noise of a basketball game was not helping. So I parked him down the hall in a little corridor, a bit away from the noise. I stood at the door of the gym to watch the game and watch Brayden parked down the hall in a corridor.

Well, that corridor was not far enough away. So I parked him further down the hall in the janitor's doorway (not pictured because my camera phone could not zoom that far). I stood at the door to the gym while I watched Brayden (or the back of his wheelchair) down the hall.

Did I mention the random strangers offering their advice on calming him down? As if I was not grouchy enough already.

Brayden has been to basketball games before and even ones at this gym. It is not just the lights and sounds at the basketball game that were bothering him...he started before we even left the house.

Oh and Sunday...he was a gem. Totally fine. He went to church, to lunch, all fine. But don't worry it started back up again today with school and at home.

He is only truly content, on days like this, if he is in his bed (that is not ok with me and will blog about it later).

What really Stresses me out

2012-01-05T05:24:00.000-05:00

Is this. Hours of this. Of all the things we have to handle for Brayden, this may be at the top of my list for stressful things...this is what makes my jaw clinched and knuckles white. It is the screaming.

It is amazing how long he can scream.

We had a birthday party to attend. He was screaming at home but I promised Carter and Luke I would try and take Brayden so they would not have to miss the birthday party. Brayden was screaming and I still loaded him in the car. While I was loading him, Carter and Luke was getting in to nice fight with each other that included some pushing and punching. Everyone was crying and we had not even pulled out of the driveway yet. I should have just unloaded everyone right then and there. But no, I pulled out and off we go. First, stop and get gas.
Brayden is still screaming.
Screaming so loud that Luke asks for someone to pray for Brayden. Carter gladly started praying.
Brayden is still screaming.
Oh wait, he pauses for a moment...but then we hit a bump in the road...he screams.
He pauses for a moment then I sneeze...he screams.
He pauses for a moment then I turn the car...he screams.
Every little thing is setting him off.

He is screaming and I miss a turn to the party not once but twice. Is there a DUIS, Driving Under the Influence of Screaming?

We finally arrive in front of the house, Brayden closes his eyes to sleep...apparently exhausted from all the screaming?! Carter and Luke dash out of the car into the house (like they were running for freedom). I sit in the car with Brayden contemplating what to do...then he starts up again. I call Jeremy, tell him to get Carter and Luke because I am heading home with Brayden.

We finally make it home...Brayden screaming all the way. I put him in bed, still screaming and eventually he stopped.

Here is the problem with the screaming.
1. I have NO idea how to help him stop.
2. He does NOT stop. He gets past the point of no return.
3. Many times, the more I try to console him the more irritated he gets.
4. I have NO idea if something is wrong...here is an idea of the checklist in my mind

Is he in pain? Maybe, he certainly screams like this sometimes...once he actually had a kidney stone and another time he had a broken leg (and we did not know)...but he has screamed many more times without some medical thing wrong.
Is he uncomfortable? I am not sure what is uncomfortable for him (other than obvious things).
Are his feeding tubes okay? Yep, always looking good.
He is getting sick? Rarely had a cough or fever...but he never really registers a fever since he does not control his body temperature well.
Is he tired? Then just GO TO SLEEP ALREADY! Stop fighting it, if he is really tired.
Seizures too much? Not usually, seizures have been under control for several months.
Medications bothering him? This may only be the case when we are changing around his meds, which thankfully does not happen too often.
Too noisy, too much stimulation? We were just in the car...in silence, all of us, in fear that any sudden movement or noise would aggravate him.
Too much stimulation/activity throughout his day? Maybe it catches up to him?

Ugh, I need to find someone that is a Special Needs Whisperer for Nonverbal Kids (like the horse or dog whisperer).

Brayden and Piggie

2012-01-03T10:45:00.004-05:00

Brayden is now the proud owner of a little pig...well a little motorized pig that he can activate by his switch.
We set him up for his first meeting with piggie. He was slow to start but once he got going, he seemed so proud of himself!

We have video!

I realize the video is a bit long (almost four minutes) for just watching him activate the switch but I want you to realize the amazing things that are happening.

His hands - his sweet little hands are active, he is moving them (his neurologist was once shocked that he has some intentional movements).
His "home base" seems to be his face/mouth. When he wants to hit the switch, he goes up to his mouth and then down to the switch.
He can find the switch.
He knows the piggie is there, he does not really look at things straight on but you can see him glaring at the piggie from the corner of his eye.
He can tolerate a long period of time (this was over an hour) of trying and letting that pig make the noise and wiggle up against him.
He is understanding cause and effect. Push the switch, the piggie goes.
He is having fun! We do not know many things that he truly enjoys since he rarely lets us know (he is good at letting us know what he does not like but not the other way around). He is making his happy noises.

Check him out below or at Brayden and Piggie.

That little pig noise can be pretty annoying after about 2 minutes but for Brayden...we will let him go for hours!

How to Break-up

2012-01-03T05:25:00.004-05:00

I need advice on how to break-up with doctors.

For example, a few years ago Brayden was seeing a GI doctor at Children's. We were in and out of the hospital every few months with this doctor due to Brayden's ongoing GI troubles (first g-tube to g-j tube and chronic vomiting and delayed gastric emptying problems). One night Brayden was taken to our local ER then to be transferred to Children's...however Children's was very, very full, not even room in their ER. Brayden was transferred to Inova Fairfax (a large hospital in Northern VA). There we met Brayden's current GI doctor. This current GI doctor has been a good fit for Brayden and for me. After a couple of months with this new GI doctor the doctor at Children's called me directly (trust me he is not the kind of doctor who makes his own calls). He asked what our plans were for Brayden, since he was curious as to why he had not seen him in a few months. I fumbled together some awkward answer about finding a new doctor. I was not sure how best to answer him; after all he did invest a lot of hours into Brayden's care (and my mental sanity).

We had a similar situation with an ENT a few months ago. The first ENT found that having his tonsils and adenoids removed would help with Brayden's sleep apnea. Due to some difficulties getting Brayden scheduled at the hospital where this ENT worked, we jumped ship and headed to Children's.

Now we are back to another doctor situation. Brayden has been seeing a Physical Medicine doctor and Orthopedic Surgeon at Children's, as part of the CP clinic. They were the ones who discovered Brayden's hip problems. And they are the ones recommending the big operation on Brayden's femurs and hips. However, we are going back to Brayden's original ortho doctor, whom he has seen since he was one year old (this doctor found that the operation is not necessary at this time and Botox can help). I just got an appointment reminder from the team at Children's. I will call and cancel the appointment but should I send an explanation?

So here is the question...How do we break ties with a doctor? We see these doctors a lot, so it is not like we can just fade away...or maybe we can? The doctors have spent a lot of time with us discussing options, doing procedures/operations. How can I break-up with them when we have switched doctors? Do you need to offer an explanation?

It is wonderful to live in an area where we have so many options for great specialists...it is just hard for us to split Brayden's care between Children's and Inova Fairfax.

New Year 2012

2012-01-02T10:25:00.000-05:00

For Brayden this year

Botox every 3-4 months for his legs/hips
Less Seizures, continue on the ketogenic diet (hopefully wean off one of his meds)
Less vomiting
Less doctors and hospitals
Going to school Mon - Thurs...we added Wed to his school days, starting this week
Decide school for Fall 2012, move on to a kindergarten classroom but no idea where (or possibly stay in preschool one more year?)
A room on the main floor of our house, just for Brayden; we currently have a large side room (13x30 ft) that we plan to make into a suite for Brayden, complete with large closet and accessible bath

Sounds reasonable, right? But we never know...Brayden always has us on our toes.
Happy New Year!

He was not so Merry for Christmas

2011-12-28T15:56:00.001-05:00

Our Christmas morning started early. ALL the boys awake about 6:30 a.m.
For Brayden it was downhill from there. He barely paid any attention to Christmas.

He dosed off for a brief moment sitting in my lap.

He screamed on and off for the majority of Christmas day and into the evening (and the next couple of days). We held him, laid him down, pushed him around,...

Not so merry Brayden.

A Christmas Eve Moment

2011-12-26T15:47:00.000-05:00

I was trying to get Brayden to smile for at least one Christmas photo. I could not even get him to look in my direction.

Not even presents or the dog could help.

A little touch and talking from his Great-Grandpa Jenkins and there is the smile.

Special Delivery

2011-12-23T10:10:00.001-05:00

WOW! We delivered all the toys and gifts to Inova Fairfax. The back of a van, with the seats folded down, filled with all the donations that we were able to collect.

At home, we tried to sort them a bit (Carter and Luke loved doing that part). Then carried them all from the basement to the garage.

A drive to Fairfax (with my parents driving down too, so we could fill up their van). Once we arrived, I am not sure the staff realized that amount of toys that were spilling out of the van.

Several trips with the carts, and the toys were all in the hospital.

How will the toys be used? Children at the hospital over the Christmas weekend will have the opportunity for presents. Other toys maybe used for the Child Life play room. Remainder of the toys will be put away to give out at birthdays, in the ER, radiology and other inpatient circumstances.

Thank you to all those who donated. It was amazing to pull up to the hospital and give so many toys!

Look at the Lights

2011-12-21T08:26:00.000-05:00

Having the house glowing with Christmas lights is always cozy and cheerful. Especially when we realize that Brayden is really enjoying them. Propped up in the chair, he wiggled his head over to stare and stare at the lights.

Even the dog came over to see what all the excitement was about...she wasn't impressed but thought Brayden looked cozy in the chair so she tried to join him. A couple of things 1. the dog is not allowed on the furniture 2. she does not bother Brayden (not really something we taught her, just what she does) so when she jumped up in the chair, she startled Brayden something terrible. It was a while before Brayden settled down.

Write to Santa

2011-12-21T07:26:00.002-05:00

We all designed our letters to Santa on the Macy's Believe site. Carter and Luke made one for Brayden.

Then I delivered them to our Macy's store.

Remember each letter is a $1 donation to the Make-a-Wish. Write your letter!

Tomorrow we deliver the presents to the hospital!

Ready for Christmas?

2011-12-20T00:42:00.002-05:00

Brayden is.
Lights adorn his wheelchair.

Jiggle bells for him to kick (He kicked one so much that all the bells fell off.

Presents for his crew.

Headed to school before winter break.

How my weekends are not so typical

2011-12-19T14:13:00.000-05:00

Just for example this weekend:

While at the Jenkins Restorations Christmas dinner, my family (parents, sister, brother, etc.) are at my house watching the kids. They called my cell phone several times but I did not hear it because, well, we were at a Christmas dinner and it was loud. They called Jeremy's phone. Before he even handed me the phone, I could see from his face that there was a crisis. I grabbed the phone and tried to find a quiet place. Brayden's feeding tube was accidentally pulled out, all the way out. They were panicked. I tried to remain calm and talk them through putting it back in. They are all on speaker phone, I am trying to hear them over the party. I am shouting out where to find things and directions on what to do...just as someone says "Let's pray" to start to Jenkins Christmas dinner. Someone starts to pray for the dinner and I am still shouting on the phone...I dash out, in the cold, to a little portico so I can finish telling them how to put in the tube back in, knowing that they are looking at a big whole right into Brayden's body. I talk them through it, tube was back in and Brayden was in bed.

At church for Carter's performance in the Children's choir. I try to position myself close to the front so I can see him, he can see me and I can take some pictures. Jeremy is with Luke at his wrestling tournament so I have Brayden. Brayden and I are in the second row of a room that seats about 900? people. I felt like Brayden's wheelchair is sticking out in the isle too much and just in the way. Brayden starts acting up, fussing. He starts kicking his chair making noise. Then the crying starts, I am trying to get out of the front as quickly as possible without causing a scene...too late. I do NOT want to be a distraction. A wheel on his wheelchair is stuck in my chair, as I am trying to get it out, my purse falls off my arm and things fall out. As I am trying to pick up my purse it is caught on the bottown of his wheelchair (wondering if my bum was right up there for all to see as I am bending down to pull my purse loose). I finally turn Brayden around to head out of the sanctuary and a pastor says, "Let's pray". That is Brayden's cue to cry some more. I keep rolling him out but when the pastor started to pray everyone close their eyes and stopped where they were...some right in the aisle. I had to ask a couple of people to move. I rolled Brayden out to the foyer, he turned from crying to screaming. I watched the children's choir on the monitor. I may have also left Brayden in the foyer crying just so I could sneak in the sanctuary for a picture or two. (I did have a couple of people offer to watch Brayden but I did not feel comfortable leaving him with someone when he was sooo unhappy). This is why we sit in the back...way back.

Put in the Corner

2011-12-14T19:29:00.000-05:00

That awful oxygen concentrator is in the corner. Possibly the loudest thing ever...and the siren/alert that goes off when you turn the machine on...deafening, Brayden may have wet his diaper a little each time the machine is turned on from being startled by the awful noise.

The reason Brayden had his tonsils and adenoids removed was due to pretty severe sleep apnea. We would dstat many times at night, his oxygen saturation may dip into the 80s, 70s, 60s and a couple times it went into the 50s...dangerous I know. I would gently wake him so he would take a deep breath and then watch his numbers go back up.

The couple of weeks home from the hospital, we still kept him on oxygen (nasal cannula) for sleep. This past weekend I tried no oxygen. I monitored several times that night (too many times, perhaps bothering him too much). His numbers looked good, oxygen in the 90s. The next night no oxygen, still checked him a few times. We are now five days in with no oxygen at night and he is doing great. I mean really great. He is sleeping better, which makes his days better...he was even a good boy at school this week.

The tonsil and adenoid removal worked for him!

And I am also thankful that I do not have to wrestle him to get in the nasal spray, put on the nasal cannula and tape...oh that was a battle. He does not like his face touched and he would get surprisingly strong to thrash his head back and forth so I could not do anything.

Now the oxygen concentrator is put back in the corner, not out in the middle of the room. Still there in case it is needed or an ugly seizure (but we won't talk about that because he is doing good).

Those legs

2011-12-10T08:07:00.000-05:00

Brayden had an appointment to see another orthopedic surgeon. The doctor he has seen since he was about one year old.

I gave the doctor a brief run down of Brayden's past few months of Botox, hip problems and recommended surgery. Brayden had some x-rays done, she reviewed the notes from the other doctors and came in to discuss.

First, she explained that this problem with his femurs is not uncommon for those with cerebral palsy and non-ambulatory.
Second, Brayden's hips have never been really displaced; meaning out 50% or more.
Third, Brayden's right hip is much tighter and starting to roll in (he has always had frog legs, knees pointing out not in).

What that means, is she would NOT recommend the severe surgery of breaking his femurs to create the proper angle. Since Brayden is not in pain, we are not looking for him to walk, and his hips are not displaced, then surgery is not a necessity. It is certainly something that could happen many years down the road (with all due respect to the orthopedists, we cannot imagine him 10 years old let alone discuss his hips when he is 20) or if his hips do have problems being displaced.

What the ortho doctor does recommend is for Brayden to start a routine of Botox every 3-4 months (I think on his hamstrings and adductors. This will relieve the tightness in his legs and his mild discomfort, it will also relieve the pull on his hips. The upcoming Botox procedure would also include cutting a bit of the muscle in his right leg to let it regrow more lengthened (I cannot remember the medical term for this right now).

It looks like this will be the route we will take. Botox and the muscle procedure is considered a surgery, about 30 minutes (only sedated not intubated) outpatient procedure. He did have Botox back in August and handled it just fine. The Botox was wonderful for his legs.

Obviously, we feel better about him having botox over the femur surgery.

Give Kids the World Newsletter

2011-12-06T07:16:00.000-05:00

After our wonderful Ice Cream for Breakfast Party in August, we made the Give Kids the World Newsletter!

Giving back at Christmas

2011-12-04T10:20:00.000-05:00

I wanted to let you know about two opportunities to give back during this holiday season. The boys and I are working on a couple of things and would love to give you the opportunity to give as well!

1. Make-a-Wish letter campaign. (yes, I have mentioned this before)
This requires NO money (just time and a postage stamp).
Write a letter to Santa, put it in a stamped envelope and drop it off at Macy's. Each letter will be a $1 donation to the Make-a-Wish foundation. As most of you know part of our 2011 year was our Make-a-Wish trip for Brayden. It was magical beyond words (dare I say better than Christmas!). If you cannot make it to Macy's, you can give it to us to drop off.

Find out more about this campaign and a fun website for the children.
Macy's or Make-a-Wish

2. Toys for Inova Fairfax families.
We know too well, the time and money that is involved in any hospital stay. Inova Fairfax is where many of the chronically or critically ill children of Northern Virginia are taken for medical care. Many families struggle with this during the holiday season. Staying at the hospital for any length of time is exhausting on the family and the wallet. We want to gather as many gifts as we can so that the families staying at the hospital over Christmas time have an opportunity for presents. Over the next two weeks the boys and I will be collecting toys (and wrapping paper) to take to the hospital. Toys for any age, books, movies, coloring books or even just a box of crayons.

You can drop them off at our house, meet at school, at church or we would be happy to come by to pick them up!

Thank you for helping us with the opportunity to give during this Christmas season.
If you have any questions, please just let me know.

Big Girls Don't Cry

2011-12-02T00:04:00.008-05:00

Yes the song by the Four Seasons, or in my case a night to see the musical Jersey Boys. This past weekend was a night out with my mom and sister in Washington, DC.

First dinner at the Willard's Occidental. Delicious dinner before the show.

Here is when the crying part comes in...

My phone is sitting in my lap. It was the first time in a while that Jeremy is home with all three boys...it has been a while since Jeremy has put Brayden to bed.

Putting Brayden to bed is more than pjs and night-night prayers. It is an hour long process filled with machines and medicines. I did everything I could to prepare things ahead of time. But still not a comfortable task for Jeremy. Jeremy usually handles Carter and Luke while I concentrate on Brayden.

Before dinner was even on the table, he called my phone. I did not hear it, even though it was in my lap. He called my mom's phone. She passed it to me. Jeremy is flustered and frustrated because he cannot figure out how to give Brayden's medications. I do my best to explain it to him, only getting both of us more frustrated. I walk outside the restaurant to the beautifully decorated courtyard at the Willard. Christmas decorations glowing all around. Tourist passing through to take pictures while I am cowering in the corner trying not have those around see me crying and be a scene.

It was too hard. I just wanted to head home. It was too much. I was frustrated, as was Jeremy. I rarely leave home without Brayden and when I do, his nurse is there. This night, Jeremy was on his own. He has not done Brayden's medications and machines on a regular basis so he needed a lot more instruction. I tried and tried to explain to him but it was like a conversation of "Who's on first" but with medical jargon...it was just becoming more frustrating and confusing.

I decided to go back into the restaurant, finish my dinner quickly and head home to get Brayden's things done. I sit down at the table, my mom and sister ask me how things were going and I start to cry. Jeremy calls me again to see how I was doing, make sure he did things correctly and try to convince me to stay. I dash to the bathroom but there were people in the bathroom so I head for the coat closet, more tears (and I was having a good make-up day until then).

I felt defeated. I just get tired of being the one responsible for all of Brayden's needs. One night...all I asked for was one night of a dinner and show. And I end up crying. I was beyond frustrated. The last thing I wanted was the night to be a mess, let alone mess it up for my mom and sister.

Let me tell you, I am not a crier. So for me to be running all over this nice restaurant crying...well it says a lot about my state of mind.

After my final call with Jeremy and a good bit a tears of frustration, I go back to the bathroom to clean up. I was going to stay for dinner and the show. Even though my head felt like it was in a fog from trying to stifle the crying too much, I enjoyed the show and time with my mom and sister (fun songs).

Being a mom to a special needs child is a heavy load to carry. Most of time it is just your norm. You always do things to take care of your child...because it is your child and you would not have it any other way. But there is just not a break or even just a breather. It just does not feel possible. Too many things to be done; over four years of experience of taking care of him...building upon each medical thing and little "tricks" to get Brayden's needs met. Too much to explain to anyone for just a night away.

We have learned that I need to show Jeremy how to do all of Brayden's things.

Feeling better

2011-12-01T07:32:00.000-05:00

The first night home was a bit long...
Up for medications, up for gagging/vomiting.
So Brayden slept most of the day yesterday.
Last night was better, only up a couple of times.

It seems to hurt him to cry which makes crying worse. His vomiting does not help either. Still using a bit of Tylenol with codeine.

The funny thing is his voice is very hoarse. A few times he starts to make a noise and looks like he does not believe it is his so it drags out whatever sound he is making to check it out.

Home

2011-11-29T19:42:00.000-05:00

Brayden is home.

Last night was rough for Brayden. Very little sleep fo him (as well as Jeremy), as they camped out in the ICU. First they had trouble managing Brayden's pain. It seems as though Brayden does not react well to morphine. He gets more upset and agitated after the doses of morphine were given. He was switched to Tylenol with codeine sometime in the night. After the morphine wore off and the codeine set in, Brayden was doing a bit better. But he was gagging and vomiting constantly throughout the night. The extra secretions, pain, swelling and crying caused him to keep vomiting...then they would suction out his mouth over and over again.

By the morning, Brayden was doing much better. The tylenol with codeine was working and Brayden was not gagging/vomiting as much. They wanted to watch him for the day to see if he could go home. Brayden made it through the day with only a couple of vomits, couple of seizures and a few times of dsat while he was sleeping (which he does at home). After talking with the ICU team (who talked to the neurology team, keto and ENT), they decided he could go home. The discharge crew came by to make sure we had suction, oxygen, monitor, etc. at home...and those prescriptions for amoxicillin and codeine.

Now, Brayden is resting comfortably in his own bed. He looks exhausted so hopefully he will get a good night sleep tonight. And I will being sleeping in his room tonight...there to suction at a moments notice.

Surgery Done

2011-11-28T19:40:00.000-05:00

Brayden had his adenoids and tonsils removed today. The surgery was done at Children's in DC.
He was admitted directly to the ICU to monitor his breathing (since we have had a problem in the past); apnea; and seizures, in part due to the ketogenic diet that limits IV fluids and certain medications.

The surgery was quick. The tonsils were completely removed; the top of the adenoids were removed but the ENT left the bottom part due to him being hypotonic and help keep things a little supported.

The wait for the surgery was not quick. As we waited in the pre-op room, they discovered that Brayden was not scheduled for the ICU. Anesthesia, as well as the ENT, would not let him have the surgery unless he was going to be in the ICU for the night. We waited as they scrambled to get things arranged. First, there was no room in the ICU, then they could not get through to insurance to have the ICU approved. All of this should have been arranged last week...thus the purpose of the pre-op appointments. A couple of hours passed and we were still not sure if he was going to have the surgery or not. Brayden was happy, in a great mood and even had a nap in daddy's lap.

Finally everything was set up for the surgery, anesthesia, ketogenic and ICU, so they rolled him off. Surgery was done in about 40 minutes, a brief stop in the PACU and then he was taken directly to the ICU.

Brayden is in the ICU. They are still working on managing his pain. A respiratory therapist is right there watching and suctioning his secretions. The neurology team stopped by to check on his ketogenic diet and try to figure out his seizure medications (hard to do on ketogenic diet and not all are available via IV).

Brayden handled the surgery pretty well. They did warn us that after the surgery he may have still been intubated. When we walked in the ICU we did not know what to find; but he is only on oxygen by nasal cannula (not at all intubated) so that was great to see and know he handled being intubated for the surgery. He stills seems to be in pain despite the doses of morphine. They will watch him through the night and tomorrow as the swelling continues. If all goes well, he still could go home tomorrow late afternoon. For now, lets pray his pain is controlled and he sleeps (and for Jeremy to get a little shut-eye since he does the nights at the hospital).

Thank you for your prayers, emails, texts and calls.

Christmas Wishes

2011-11-24T20:00:00.006-05:00

Thanksgiving decorations are still on the table and we are all preparing for Christmas. As many of you embark on crazy Christmas shopping, gearing up for Black Friday, making those lists...consider this.
Write a letter to Santa.

This year Macy's has a mailbox that is just for letters to Santa.

For each letter, Macy's will donate $1 to the Make-a-Wish foundation. You do not have to donate money, just a little time for a letter. Have your kids write a letter. Stamp the letter, drop it off at Macy's and Macy's will take all those letters to the post office for Santa.

Write on your own or use Macy's online tool.

If you do not have time to stop by Macy's or do not have one near you, just send them to us and we will be happy take them to Macy's. Carter, Luke and Brayden would love to drop them off at Santa's mailbox.

Make-a-Wish granted our wish, please help others have their wishes come true too. Just write a letter to Santa. For more information, you can check out Macy's Believe (has lots of fun Christmas activities on the site) or Make-a-Wish.

If you would like to send your the letters for us to drop off, please email me (efcarrie at aol dot com) for our address.

Time for Thanksgiving

2011-11-24T08:21:00.000-05:00

It is Thanksgiving morning. The house is quiet. Just Brayden and I home. Jeremy has the boys for their first Thanksgiving hunt (I think they are hunting ducks or geese?). I am busy cleaning up around the house. I usually have the TV or radio on as I do things around the house. This morning it is just quiet.

My head swirls with preparing not for Thanksgiving dinner but for next week.

Brayden is going to Children's for surgery to have his adenoids and tonsils removed on Monday. We had two pre-op appointments this week. One for blood work and check-up. The other for anesthesia. Our anesthesia meeting was long, too long, two hours too long. We talked with the NP for a while and then with the anesthesiologist.

The procedure to have the adenoids and tonsils removed is routine and, for most kids, outpatient. With all of Brayden's medical needs and medications, we seemed to overwhelm the plans for pre and post surgery. Brayden is hooked up to his feeding tube for over 20 hours a day, on a ketogenic diet. He also takes over 10 medications. With the rule of clear fluids then no fluids X amount of hours before a surgery, we have a hard time doing that for him. He cannot be put on pedialyte too long because of the ketogenic diet. Then the total quantity of his medications and flush are too many fluids before a surgery.

During the appointment they considered bringing him in the night before so that he could be on IV fluids and medications. Then they found that Brayden's surgery is tentatively scheduled for 12:30 p.m. which means we can do his essential medications (seizure meds) that morning. The ketogenic team is putting together a plan for Brayden's fluids.

The anesthesiologist and the ENT have decided to tentatively schedule Brayden to go to the ICU after the surgery since he struggles with sleep apnea and seizures, which could be aggravated by the procedure. The swelling that happens after the surgery can cause be a brief problem for apnea.

While all of these things are put in place to protect Brayden and trying best to prevent any complications, it feels like too much. They say, "the procedure is routine and he should handle it fine" then come back in the room to say, "we have put in for a bed in the ICU after the surgery"...not something that seems simple and routine to me.

This is the first time Brayden will have a surgery, since his respiratory problems and stay in the ICU back in the spring. He did have the Botox in August, which was a total of 20 minutes from when I handed him over to when they paged me for his recovery...anesthesia barely counts that as a procedure.

The plan at this point is to have prep phone call on Sunday night with strict instructions from the keto and anesthesia team for his fluids and his medications. Also to find out the official surgery time. Monday, we arrive two hours before the procedure. He goes in the surgery that should take about 45 minutes. Then Brayden maybe put in the ICU for observation for 23 hours. If all goes well, he could go home but we were told he could possibly have one more night in the hospital.

The good thing is since Brayden only takes fluids by his feeding tube, we do not have to struggle with eating. he also has an incredible pain tolerance.

So on this Thanksgiving morning, I am working around the house like when we go on vacation. Laundry done, fridge cleaned out, all the boys activities/needs situated and bags packed. And I cannot forget those comfort items and things to pass the time.

But this afternoon, there will be eating. Eating the dinner just so I can have the dessert. Gobble, gobble.

Crafts done by Brayden with the crew at school.

The sweet moments

2011-11-20T15:18:00.000-05:00

Brayden was not settling down one evening. I asked Luke to help calm him so I could get Brayden's things ready for bed (it is a process that takes a while). Luke climbed into bed with him and watched a movie, immediately Brayden was content. I came in to see Brayden stroking Luke's hand with his. Brayden was so peaceful.

Grandma Sommerfeld

2011-11-13T20:24:00.000-05:00

Jeremy's Grandma Sommerfeld is now rejoicing in heaven. She lived an amazing life. A beautiful Godly woman. If I could just pick a couple of words to describe her it would be content and peace. She was content with whatever God handed her way, not a complaint or even a whimper. She was always so peaceful, never showing anger or frustration (of course some of that happened in the last couple of years as the "filter" faded away but it was still so endearing no matter what she said). She always seemed at peace with her life, at any stage. Also, watching Jeremy's mom take care of Grandma over the years...such a picture of love...always making sure her mom was taken care of, a part of countless family events, driving her back and forth, and catering to Grandma's needs, that became more and more over the last few years.
Grandma Sommerfeld spoke so fondly of her beloved family. Always embracing with a hug and a sweet gentle kiss on the cheek.

In our family, the one who got the most of those hugs and kisses was Luke. Some how, from very early on, he clicked with her. He always wanted to go to lunch with her after church. Never leaving to get in the car until he gave her a hug good-bye. I asked him once about his connection with Grandma...he told me it was because they both had white hair. Even this past week he made her a card. It took him two tries to get it just the way he wanted. He drew a picture of him giving her a flower. Grandma's hair was done with a white crayon to have curls; his was with the same white crayon, straight hair.

I quickly scanned through some pictures and I found an abundance of those moments with Luke and Grandma. Precious.

Since Brayden came along, we were never quite sure how much Grandma understood about his medical needs and disabilities. I guess she didn't really need to know, he was another one of her great-grandchildren to love. One Thanksgiving, Grandma was not able to move much nor was Brayden. Both of them were parked in a room. No one else in the room. I glanced in to check on Brayden and I saw Grandma gently place her hand on Brayden's hand. Melt my heart and tears in my eyes. She loved him just the way he was.

Grandma Sommerfeld will be missed. I am so thankful I had the opportunity to be a part of her life and that my children had her as a great-grandmother. She is leaving her legacy as a woman who loved the Lord (she oozed the grace of God) and she loved her family.

Port Discovery for Brayden

2011-11-12T18:16:00.000-05:00

Last week the boys had a couple of days off from school. So we headed to the inner harbor of Baltimore to visit Port Discovery Children's Museum. I thought it would be a good experience for Brayden. Art and crafts, water room, play-doh, etc.

Well, he only liked for about an hour...then he fussed and fussed until we left. Walking around outside in the beautiful weather calmed him down.

FWD

2011-11-09T16:15:00.001-05:00

I often say how blessed we are to live in this area for Brayden. We have access to countless doctors and specialists that are the best at what they do. The amount of hospitals, speciality centers, research centers, university hospitals...in this area is mind boggling. We do not have to drive hours to get care. We have many options right here (although it may still take hours with traffic).

We do not have to worry about food, shelter, clothing, safety, medical treatment, etc.

I know that if Brayden was born in many other parts of this world, he would not have lived long. I cannot imagine as a mother not being able to provide for my child...not being able to even provide the basics of food, clothing and shelter. We do live in an amazing area and country.

Right now there is a campaign to help Africa. Those who are struggling to stay alive. Mothers who cannot care for their children. It is mind-boggling to think about all these people suffering and dying.

A note from my brother who has been leading this from the inside at US AID.

Dear friends and family -
People ask me all the time what I do at work and its always difficult to explain.
But over the last two months, I've been working many late nights and weekends leading a public awareness campaign for people in East Africa (Kenya, Somalia, and Ethiopia - also called the Horn of Africa). The campaign is called FWD - and we are asking people to help spread awareness about a crisis that is currently taking place.

Right now in the Horn of Africa people are suffering from the worst drought in 60 years, the worst famine in 20, and non-stop violence. The result of this is that 13.3 million people have had to flee their homes, 750,000 are likely to die in the next 3 months, and more than 30,000 children have already died. Just as a point of reference - this disaster is 5 times the size of the Haiti earthquake.

I've heard countless stories of families leaving their homes to find food - only to die along the way. My co-workers have spoken with mothers who left their houses with two or three children - only to arrive at refugee camps with one child. The mothers were to weak to carry all of their children so they had to choose which child would live, and which would die along side of the road. No mother should ever have to choose which of her children can live, simply because she doesn't have food.

I'm guessing like most Americans, you've never heard about it. In fact 60% of Americans have no idea this crisis is even going on.

Today is the most important day of the FWD campaign. Today is FWD Day. On this day, we are asking 13.3 million Americans to take an action for the 13.3 million people impacted by this crisis. We've got a lot of exciting things lined up the day - the part that I'm the most excited about is our Celebrity videos being featured on youtube.com home page. You can also check them out at youtube.com/fwd.

I'm sending this e-mail to you, to tell you that you can help. You can help save a life today. There are several things that you can do.

1. Forward this to everyone you know. The more people know, the most people will feel completed to act.
2. Text "Give" to 777444 to donate $10 to relief efforts. Your $10 will literally save a life. It can provide food for a child for 10 days or it can provide a months supply of water.
3. Visit our website, www.usaid.gov/FWD to learn more about the crisis. You can also donate online from the site.
4. Finally, but more importantly pray. Pray for the people impacted by the crisis - pray that God will move in the Horn of Africa.

This is by far the most important project I've ever worked on in my career and I appreciate your support as we work to save lives.

Date and Venue

2011-11-09T08:25:00.000-05:00

Brayden is scheduled to have surgery on Nov 28. He will be having his tonsils and adenoids removed.

We are not having the procedure done at Inova Fairfax. He will be downtown at Children's. While Fairfax is much easier for us, having it done at Children's became a better choice (to complicated to explain).

Brayden will go in for surgery that morning and plan to stay one night in the hospital for observation. It is typically an out-patient procedure but for Brayden, since he is anything and everything but typical, we get 23 hours of observation (that is what I was told by the pre-op nurse).

Screamer

2011-11-02T14:01:00.000-04:00

That might be Brayden's new nickname at school. He has been screaming his way through his hours and days at school.

No clue as to why. He has been doing fine with us. Yes he fusses and cries sometimes for us but at school he is consistently crying and screaming. This is his 3rd year at school, almost all the same people in the classroom, same room, same routine and activities. The past couple of years he did really well at school...this year is a different story.

I have discussed things with his teacher several times and his nurse (who accompanies him to school). They are trying little things here and there to help him. But no one is really sure what is triggering him to become so upset. And then he gets really upset...past the point of no return...he gets so upset that he is inconsolable.

This week, a behavior specialist was called in to help. Jeremy and I both got a good chuckle with the thought of a behavior specialist called in for Brayden...a child that cannot talk or walk has behavior issues. Really the specialist was brought in to help with fresh ideas and maybe a new perspective on Brayden.

He sample school picture came home this week. I did not know it was school picture day (his brothers had football that night and he was wearing a football t-shirt in support) and clearly he was not pleased. Although Jeremy is calling this his football face. But hey, he wasn't screaming for the photo...that happened before and after.

Brayden made it through Halloween

2011-11-01T10:34:00.000-04:00

Yes, we dressed up Brayden for Halloween. I justified it because it was a hat (Yoda head) and a warm jacket/blanket (the Yoda wrap), all to keep him warm for the cold Halloween night. His chair decorated once again with the pumpkin lights. He did not seem to mind the trick or treating until he was tired. For all the family fun check out the family blog.

But honestly, he is the cutest Yoda ever.

Happy Halloween

2011-10-31T12:10:00.000-04:00

Brayden has been busy with his Halloween fun!
Crafts at school.

Doing it up at the church's Trunk or Treat. Yoda, yes he was Yoda.

Tonight it is trick or treating in Waterford! This year I did not torture him with carving the pumpkin, last year we tried his hands in the pumpkin guts...not a fan.

If you can't move wiggle

2011-10-28T13:23:00.000-04:00

For a kid who cannot move much, he sure can move.
About 4:00 a.m. he cried because he was stuck like this but with a pillow over his head. Jeremy went in, straightened him up; tubes in all the right places, pillow on each side to help support him and protect the tubes.

About 5:15 a.m. I checked on him and he was back to being sideways in the bed. Kicked the covers off, shirt hiked up, oxygen tube over his head (even with the tape), drain tube still hanging in the bobby pillow, laying on his feeding tube, other pillow that is supposed to be on his side pushed to the top of the bed. Sound asleep, apparently a lot of work to get like this...it made him tired.
Seriously, what is the boy doing!?

DMO Suit...like a wet suit or spanks

2011-10-27T10:19:00.001-04:00

Another trip in the car. This time downtown to National Rehab Hospital (right behind Children's DC) to try out Brayden's new DMO suit.

But first before the DMO suit, I have to tell you about what happened before we even made it to the doors of the NRH...Yes, once again the traffic was TERRIBLE. Over 2.5 hours to get downtown. Every road we were on had some sort of issue. About halfway through the trip, we started to smell something...Brayden was working on a diaper. Oh boy. The car was smelling, I am pretty sure you could see the waves of fumes coming from him. But do we pull off the road in rush hour traffic to change a diaper? NO way, we are not crazy. Meanwhile I call the office to let me know that we will be late. I was given the "if you are more than 15 minutes late then you will have to reschedule your appointment" lecture. I politely replied with "we have been on the road for more than 2 hours trying to get there, we will still have the appointment." We finally arrived and pulled Brayden out of the car...realizing it might have been a good idea to pull over in traffic because it was a diaper blowout; up the back and all over the car seat. As if we were not late enough, he needed a full wipe bath, change of clothes and cleaning of the car seat. We did the best we could and dashed into the hospital (pretty sure Brayden still had some residual smell).

They did not cancel the appointment. In fact they were very kind and understanding, knowing the we had to travel a bit to get to this appointment. Although, I was ready to cry/fight to keep the appointment no matter what time we showed up.

What is a DMO suit? Like a wet suit or supped up spanks with more support.
The DMOs are fabric orthoses made from Lycra based fabrics. They are designed to provide client specific, orthoses to assist in neurological and functional dysfunction often seen as aiding mobility and posture...The orthosis may improve the client...by reducing excessive muscle tone and improving stability...additional benefits, increased awareness of body position, increased confidence in movement or adaptation to movement.

Zippers and snaps to put it on (add many more minutes to the getting him ready in the morning and going to bed at night). A hole/flap on the stomach for the g-tube and his j-tube. Yes his diaper is hanging out and the legs have zippers and snaps for diaper changes (can you imagine a diaper blowout in this thing? I did make sure it is washable).

It also came with a hard shell for his abdomen, something that can be used for extra support and/or therapy.

The DMO suit (not the shell) is to be worn every day, all day and taken off at bedtime. But first, Brayden has to build up to that; starting with one hour the first day, 2 hours the next, etc.

Brayden did have the suit on for over 20 minutes and seemed quite happy in it. He does really well with pressure/support/deep sensory input; it has always seemed to give his a better sense of his body and comfort being in his own skin.

The DMO suit still needs some to be adjustments to fit his arms better and accommodate both the g-tube and his j-tube. I will drive back downtown in about 2 weeks to pick it up.

To make the trip even more worth while and a reward for myself because I needed a little boost of energy we had to make a stop...

It's all about the angle

2011-10-26T14:15:00.000-04:00

Back to the orthopedic surgeon for an actual visit that involved office time and not just discussing things the halls.

This time we headed over the river to Maryland at a Children's outpatient center in Shady Grove. An 8:30 a.m. appointment. That meant we had to tackle I-270, which has to be one of the worst places ever for traffic heading into DC. I am pretty sure it knocks years off your life just for traveling it during rush hour.
We left at 6:30a.m. Jeremy met us there because I needed him to hear all of what the doctor had to say about Brayden's femur/hip problems and potential surgery.

Brayden was sent for lots of x-rays on his femur, hip and spine. Jeremy went with Brayden while his nurse and I waited in the exam room. Apparently the radiologist did not make the x-rays an easy experience. For one thing he insisted that Bradyen's diaper be removed and you know what happened...Brayden wet all over himself; a good soak to his shirt, undershirt and blanket...nice and wet with urine.

After the x-rays were done, the orthopedic surgeon came in to discuss. And I will try my best to explain what he said (and my illustration to show the angles)...

Basically the top of your femur should be at between at 120-135 degree angle, at the neck of the femur, to fit properly into the hip socket. Brayden's femur has barely any angle at all. This means a a couple of dangers; easy to dislocate the hip and as the femur continues to grow it has strong potential to hit the hip socket and cause significant damage to the pelvic bone. All mean potential pain and serious discomfort for Brayden. The orthopedic surgeon suggests that we have surgery to break both femurs and to place rods in that create the proper angle. It is a possibility that the hip socket has to repaired as well. All of which means long surgery time. It could be done over a couple of procedures. The doctor did spend a lot of time talking with us, answering our questions. He reviewed the x-rays, describing it all. And showed us an x-ray of a child who had the procedure done.

Our plan from this point? I am not sure. We are going to get a second opinion from Brayden's original ortho doctor. And we will be back to see the orthopedic surgeon in Dec to discuss our plans.

Take out the Tonsils & Adenoids

2011-10-21T16:11:00.000-04:00

Brayden was scoped this morning. A scope to check his nose and throat. Everything is looking good for surgery to remove his tonsils and adenoids.

The scope lasted several minutes. Numbing drops. One person to hold his head still (did I mention he HATES his head/face to be touched unless we are stroking his hair). One person to hold his arms. The doctor threading the scope into his nose, down his throat.

Thankfully no problems, no major gagging or retching spell (which I completely expected to happen and it did not). Tonsils still looking really big, adenoids only a little big.

The numbing drops seem to bother Brayden, he was breathing strangely and coughing but otherwise looking good.

I called the surgery scheduler...the voicemail said 8-10 business days to return phone calls! Hoping to have the surgery done sometime the middle of November. We will be at Fairfax so they can handle all of his needs.

In addition to our fun...another surgery?

2011-10-15T09:26:00.000-04:00

For the past couple of weeks, we have doing the rounds with doctors about Brayden's sleep apnea. A talk/emails with the pediatrician and neurologist, lead to an appointment with the pulmunologist, which lead to an appointment with an otolaryngologist (ENT).

On a side note, if I were a doctor I would want to be an otolaryngologist, just because it is a fun word to say. And yes, I like words just based upon how they sound. For example, I know a name I would use if I was a Bollywood star or NFL player or I may eat a dish because the name of it sounded good or I may say things in French or Spanish because I like the sound of those words better. There are words I would like to add to my daily vocab because they are fun to say...not that I am at all looking to add otolaryngology because it is another doctor Brayden has to see.

Okay, back on topic, the ENT Brayden saw yesterday. Brayden's tonsils are definitely large. In fact the doctor called me over while examining Brayden and asked,
"Do you see the tonsils? Do you see the black hole down into the throat?"
I replied, "I see the tonsils but no black hole."
To which he replied, "There is no black hole because that is how big his tonsils are right now."

The large tonsils are an easy explanation for Brayden's sleep apnea problems. The plan is for Brayden to go in next week for a scope to check his adenoids, down the throat to the voice box to check how things look. With the goal to be a surgery to remove Brayden's tonsils and adenoids.

While this is a common procedure, we know that this can be difficult for Brayden and it means another stay at the hospital.

Party time, all the time with the Jenkins.

Clinic, Lab, another Clinic, to ER

2011-10-14T08:20:00.003-04:00

Yesterday was long. I knew that it would be long but no idea it would be for twelve hours. This post will be long...
By the end of the day, Brayden had hospital bracelets on every extremity.

We (Brayden, his nurse and I) headed downtown to Children's. A drive that became a 2 hour and 20 minute ride. We finally arrived for the ketogenic clinic (the special seizure control diet). The neurologist and nutritionist were happy to see Brayden looking healthy since the last time they saw him in person was back in the spring. Brayden has been on the diet now for 1.5 years. Since he is gaining weight and handling the diet quite well now (after some serious weight loss), we are going to increase the diet for, hopefully, better seizure control. Still a few questions about one medication (Diamox) and how his pancreas continues to handle the diet.

As part of the ketogenic clinic, Brayden has lots of blood work done. We headed upstairs in the hospital for the lab. I believe I saw 16 vials that needed to be filled. I have learned to request certain people to stick Brayden. He is a hard stick and we don't need people trying then calling for the "person who always gets it". First stick and we got blood for a few vials but then it was gone. Second stick, a slow a painful draw that filled more vials but then that vein was done. Third stick and another slow dripping of the blood but the vials were finally full. Did I mention Brayden is SCREAMING the entire time.

We left the lab for the cafeteria. I dined on the usual pizza.

Then we headed to the orthopedic clinic to meet with the orthopedic surgeon and the physical medicine doctor. We waited for 1.5 hours to see the doctor. When we finally made it back to the examination room, my phone rang which surprised me because I do not get cell reception in the bottom floors of the hospital. The call was from the neurologist at the ketogenic clinic. Some of Brayden's labs were back and his potassium was "dangerously low", she wanted us to head to the ER.

The orthopedic surgeon came in to tell me that it would be just one second. I politely (not really) said, "We have been here all day, waiting for you for way too long and now we are told that Brayden has to go to the ER because low potassium. I have waited for this appointment for three months, I am not taking him to the ER until we can talk to you." He did talk with me and the physical medicine doctor in the hall of the orthopedic clinic. He showed the x-rays of Brayden hips. Both femurs are not placed very well into his hip socket. His bones did not form/angle properly for them to ever fit nicely into the hip socket. This could mean a lot of hip displacement, pain and problems for Brayden. The orthopedic surgeon said that Brayden needs to have surgery on both legs/hips. Basically breaking his femurs, putting rods in to properly align everything. WHAT?! That is some serious surgery. I asked as many questions as I could think of in that moment, standing in the hall. We are scheduled for another appointment with ortho surgeon in two weeks since this did not really count as an appointment. (if Brayden's pediatrician or ped nurse is reading this...I need to talk about this to make sense of it all...is it something that is necessary...it sounds like a very big deal for Brayden).

So to be honest, I completely blocked out the conversation with the orthopedic surgeon as we dashed down the hall to the ER. We headed for more waiting but at least the neurologist called ahead of time to let them know we were coming and what needed to be done. We made it back to a room and again more waiting. We were told that if the labs did not come back looking better then Brayden would be admitted to the hospital. If the bloodwork was better, then we were headed home.

Meanwhile, Jeremy is trying to decide what to do. I have nothing to stay overnight with Brayden and I have his nurse with me. What to do if Brayden is admitted? So Jeremy, Carter and Luke started to drive downtown. The weather was terrible which means the traffic was terrible.

We waited and waited in the ER. Finally someone came to take Brayden's blood and give him an IV. Then we waited again. Brayden was miserable. He surrendered to a little nap once I rocked him for a bit.

Did I mention that it is 7:00 p.m. at this point? Finally the results came back and things looked better, his potassium was within the normal range. I have no idea what happened, we just packed up and headed out as fast as possible.

I called Jeremy to let him know. And wouldn't you know it, he was just a mile from the hospital after a 2.5 hour drive. He turned around, the boys had not eaten so they were headed toward food.

We drove home and crashed.

Oh what a day...

So if you see me this weekend and I am a tad grouchy then you know why.

And we still have one more appointment this morning (Fri) with the ENT dr to discuss Brayden's sleep apnea.

We are the went to the Circus

2011-10-11T14:37:00.000-04:00

For Carter's birthday, we got him tickets to the Big Apple Circus. It was just me and my three boys for an afternoon of fun at the circus. We loaded up on goodies and food. Then all three sat quietly and soaked it all in.

Brayden was happy with all the music and lights.

The Big Apple Circus was incredibly accommodating. I called before purchasing the tickets to find out where accessible seating was in the tent. Many of us know that accessible seating can mean a back corner because they have no other place to put the wheelchairs. The circus had box seats, 10 rows back for our crew. Not only great seats but discounted price for the disabled and guests. When we arrived, the parking was not close to the circus tent. I asked one person and they asked, "Are you Carrie Jenkins? You can park right up here." We parked almost in front of the tent. Then upon entering the circus grounds, we had a personal escort that would help us get food, toys, etc and take us right to our seats. And all I did was call for accessible seats and asked for nothing more...at the Big Apple Circus we were treated a bit like celebrities for the day!

Give me O2

2011-10-10T18:24:00.000-04:00

Brayden's sleep apnea has recently been a bit troubling. We have now started to put him on oxygen through the night. On the oxygen, his O2 sat has been much better.

Brayden saw the pulmunologist the end of last week. First thing the doctor said, "We have met before."

Then I started to realize why. This pulmunologist has been a consult for Brayden when in the hospital...for several reasons: vomiting a lot and they like to check for any aspirating issues; this pulmunologist saw Brayden in the PICU when he was having breathing troubles; and he has been consulted about Brayden's pancreas. Why the pancreas and pulmunologist? Odd combo, right? Well Brayden's pancreas troubles are similar to kiddos with cystic fibrosis, who are monitored mostly by a pulmunologist. When we (the pediatrician and GI dr) were trying to figure out how to give Brayden the proper pancreatic enzymes via j-tube, this pulmunologist was part of those conversations.

Ok, back to the visit. Brayden sleep apnea is no surprise. We talked with the pulmunologist for at least 45 minutes, discussing Brayden's issues and medications. The pulmunologist wants Brayden to see an ENT (Ear, Nose and Throat specialist) about his tonsils. Then Brayden may do a sleep study. What we do next is dependant upon what the ENT dr finds.

Add at least one more appointment to this month.

Many, many things to do...top of the list, avoid the hospital

2011-10-05T17:38:00.000-04:00

Last week I sat down to email some of Brayden's doctors. Brayden has several appointments over the next couple of weeks and I check in with his core doctors before some of those appointments.

I emailed his pediatrician and neurologist, discussing Brayden's slight increase in seizures and sleeping troubles (his pulse-ox monitor does not show good numbers for his breathing when he is in a deep sleep). The pediatrician emailed me back that night with some ideas on what we could do. The neurologist emailed me back that night and said to come to the hospital for the weekend.

Confession - I kind of ignored the neurologist's email...I had no desire to take Brayden to the hospital. How often do you tell a doctor "No"?

I waited until the morning to sort things out. I talked to the pediatrician. Then I spoke to the neurologist for about 20-30 minutes, I had to acknowledge that I did get her email and did not respond. The neurologist was still wanting to have Brayden come to the hospital, she was at the hospital for that weekend and we could have direct, immediate attention from the pulmunologist.

After much discussion, the neuro was comfortable handling things out-patient. Thank you. The plan: Brayden is now officially seeing a pulmunologist...add that one to the list. The pulmunologist will review Brayden's breathing troubles during sleep. In the meantime, we have oxygen at home to put him on at night.

So this week and next...

Brayden visited the cardiologist...take that one off the list. After an EKG and echocardiogram, the cardiologist said all looks good and Brayden does NOT need to see him regularly.
But we were back to the opthamologist for Brayden's eye trouble/infection. 8:00 a.m. appointment, yawn and a stop at Starbucks afterwards. Brayden's eye does look better so just a few more days of eye drops.
After the opthamologist (well, after the stop at Starbucks), we headed directly to the hospital for chest x-rays that we need to take to the pulmunologist appointment.
Tomorrow is the first pulmunologist appointment. We are prepared with the chest x-ray and last year's sleep study.
Next week is the ketogenic clinic when we meet with the neurologist for the keto team and nutritionist. Then to the lab for blood work.
The same day as the ketogenic clinic is the cerebral palsy clinic which is meeting with the orthopedic surgeon and physical medicine doctor. Brayden's hip is still a problem. His right leg is significantly shorter than his left. And the orthopedic department at Children's is the WORST place EVER! Long, long waits and disorganized. It will be a long day at Children's, first keto then ortho.

Busy, busy. Living out of the car, listening to way to much NPR. Party time, party time...

Wait, we still have all the boys in school, homework and football almost every night. Later in the month, Brayden has a couple more appointments but I am choosing to ignore those right now.

Busy, gearing up for more busy

2011-09-29T18:19:00.001-04:00

This week has been busy.

Lets start with the fun stuff.

This caricature of Brayden was done during our Make-a-Wish trip.

The artist knew it was for Brayden's wish trip and added a little extra. I finally had the picture professionally framed and is now hanging in Brayden's room.

Now the not so fun stuff.
Brayden screamed his way through the beginning of the week. So much, that I picked him up from school one day. It may have been because he had an eye infection. We (the nurse and I) took him to the opthamologist to have it checked out. His eye was really blood shot. Brayden SCREAMED the entire time we were there. It took two of us to hold him just for the doctor to look at his eye. It was some sort of infection and was irritating his eye. We now have a couple of eye drops to give him. Then a follow up appointment with the opthamologist next week...oh, looking forward to that appointment...

Deliveries.

Lots of medical supplies delivered this week. And I have NO idea where to put everything. First, Brayden received a portable suction machine. His vomiting still continues. We are now the proud owners of his original suction machine to pump his stomach and a new suction machine to suck the vomit/bile/saliva out of his mouth. Not only do we have two suction machines, but now the multiple canisters and tubing (we get a couple of months supplies, so a set of 8 for each machine).

We started with a new supply company for some of Brayden's needs. All of his feeding and respiratory come from one company. And this new company is (hopefully) able to get some of the random supplies, like diapers, gloves, bile bags, etc. Those supplies arrived this week. Boxes are everywhere.

Brayden's closet needs a makeover to hold all of this gear.

Seizures.
Started off the week looking good. Then today, four significant ones this morning. Followed by at not-so-good seizure this afternoon. Diastat was given and so far he seems out of it.

Sleep.
Brayden has been sleeping A LOT...whenever and wherever he can. If he is not sleeping, he is trying to sleep. I am not sure what to do about it. I have been noticing the past several weeks that his night time sleeping is really deep, too deep. His lips turn purplish...I put him on the pulse ox monitor and his O2 sats are low, dipping into 70s and 80s (it should be high 90s). I jostle him around to wake him up to get a good breath and watch his O2 go back up into the 90s. I have emailed a couple of doctors to hopefully figure things out...who knows what is going on...

September - we settled into the routine of school and activities
October - many doctor appointments, lots.

Fear

2011-09-23T11:07:00.001-04:00

Fear: a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid. Synonyms: foreboding, apprehension, consternation, dismay, dread, terror, fright, panic, horror, trepidation, qualm. Antonyms: courage, security, calm, intrepidity.

What are you really, truly afraid of? I'm not talking spiders, roller coasters, etc. Fear, deep down inside fear.

I have to be honest, I am just going to put it out there and this will be some ramblings of my thoughts. You may think I have jumped over to the crazy/paranoid train...sometimes I feel like I may. This fear, it is a new fear. It may have always really been there and I have not acknowledged it but I feel it now.

I am terrified of losing Brayden. Like, I feel it.

Developmentally Brayden has been improving, medically not so much. As he gets older, we seem to be discovering more "problems". His first year of life, he seemed to only deal with very mild seizures (and of course severe developmental delay). Now...well it would just take to me long to explain all that we manage on a daily basis.

Over the years we have seen him in the hospital more times than I can remember. Thousands of seizures, some that seemed like he may never come out of no matter how much medicine they were giving him. Yes, I was scared in the moment but never truly fearful.

Until this past spring when Brayden had 3 back-to-back hospital stays. One of the hospital stays was the hardest ever. After no food, no feeding tube, several procedures and being intubated twice in just a matter of a few days, he went into respiratory distress. The real first time it has happened to him. Yes, he does have some problems with his oxygen sat. when dealing with seizures but nothing to this level.

This was the first and ONLY time Jeremy has called me late in the night to tell me I needed to get back to the hospital IMMEDIATELY.

As most of you know, Jeremy does the nights at the hospital and I handle the days. Out of the countless hospital stays and ER visits, we have NEVER called each other saying (with fear) you need to get back to the hospital immediately.

I can feel the adrenaline rush just sitting here typing about that phone call.

I do not think we were in real danger of losing Brayden at that moment. Even though things were serious and he was in the ICU, he was still breathing on a bipap machine and not intubated because he absolutely could not breath, he was breathing some on his own just not enough. But I have never seen his body work so hard just to be functioning. Seeing a machine force air into your child's body, watching his chest violently puff up and down...definitely rattled me.

What I have realized is in the that moment a little ugly seed was planted...how much longer can Brayden live like this? I know Brayden is medically fragile. If we were living in a 3rd world country or just did not have access to proper medical care, Brayden would not have lived long. I realized that Brayden's body goes through so much just to be functioning whether in the hospital or at home.

I have met many families that have walked similar paths and have lost their children. I can barely stand to hear about it, it feels too close.

It doesn't help that we have had doctors start discussions with us about "quality of life"...what this translates to me is that there is not much we can do, we just manage what we can to keep him comfortable. Then doctors surprised that he is going to school or that he even lifts his arms. We had one doctor say "Wow, look at that! He brought is hand up to his face!" I am thinking, umm did you not think he could be able to do that?

The doctors have ordered tests looking for a syndrome/all encompassing diagnosis. And I would read up about what they were testing for and always listed in the descriptions is life expectancy. In black and white, many saying that the child does not live past "early ages or childhood". While Brayden has never fully fit into just one diagnosis, he certainly seems in some categories one way or another. And we had certainly had the hospital chaplains (not from our church, the ones from the hospital chapel) come in to check on us. I know they mean well, but having chaplain come in to talk...well I have seen too many movies.

Pretty much since the day we brought Brayden home from the hospital as a newborn, I take a deep breathe and whisper a prayer before walking into his room in the morning. I have always been worried about what I would find, never knowing what was on the other side of the door. It would be simple things like: Please no messy diaper since he doesn't cry to let us know and he may have been laying in it all night. Or how much vomit this morning, please no bloody vomit, skin burning from the vomit. Please no terrible seizure...

But those have just been worries/concerns. This new fear is bigger, may be coming to grips with what Brayden's life is/is not. My thoughts about this are all over the place. Is God preparing my heart for the inevitable? Brayden's body goes through so much to be here on earth with us, do I want to imagine him free of it all and sitting with Jesus in heaven? Am I really trusting God to know what is best for Brayden? If I ask HIM, do I really want to know the answer? Is my fear really about control?

Frankly, I just do not know what to do about this fear.

This week I was reading a book discussing the Holy Spirit, specifically about Elisha. I felt like these words were in flashing neon letters, "[His] response to their situation was not fear, but confience in God.... Fear turns into courage."

I need courage.

The Help

2011-09-22T18:03:00.005-04:00

Have you read the book? Seen the movie? I have.

The way those women treated their help was appalling. I cannot fathom treating people like that (just because of skin color), let alone someone you are entrusting the care of your children to. Can you imagine speaking to someone like that? Then have them turn around to care for your children? Whether you read the book or watched the movie, it is very clear there is a special bond between the help and the child, despite the chaos around them.

I have to admit that I never thought I would have help. I have help with the cleaning...we love our Ms. Alma and her ladies. Sometimes I even have help with the groceries...thank you Peapod delivery and Harris Teeter pick-up. But having help with Brayden, is the most important and the most difficult.

Having a nurse to help with Brayden has certainly been life changing for me. It is a relief to have help. But making it comfortable is when it becomes difficult. I am asking someone to take care of my baby. One of my most precious things ever, and I am asking someone else to take care of him.

Yes, the nurse is there to do a job but taking care of my child is so much more than a job. I do not think that yelling, belittling or just not treating the nurse unkindly will help. I feel like the more comfortable the nurse is in our home, the better a job they will do for us.

Brayden cannot tell me how he likes the nurse. I just have to watch him and see how he reacts. There are so many little quirks to Brayden. Fake cries, strange looking seizures that may not look like a seizure to start, where to place his toys, where to touch him, how to get him comfortable, etc. All takes time...getting to know Brayden.

A nurse is with us for 40 hours a week. That is A LOT of time. Of course we have to set up boundaries but the nurse becomes a part of our daily life, a way that we function as a family. It is a big deal. I have to be comfortable too. The nurse is around my other two boys as well, several hours a day.

There a lot of factors that go into good or even great nursing care. This person is in my home, taking care of my baby.

How do we find a balance between demanding the job be done well and integrating them into our family?

*In case you are wondering, the new nurse is working out great. Brayden's has shown her his seizures, vomits, tube came out and she replaced it, big diaper blow-outs,...she handled it all with flying colors.

Listening and Seeing

2011-09-21T18:13:00.000-04:00

As I was out running errands today, I happened upon the Kids Radiothon for Children's National Medical Center. All day they played songs intertwined with stories about children who have come to Children's. I sat and listened, definitely teared up for a few of the stories.

One dad shared a story about his son. His son was born with several brain abnormalities and found out that he had a certain syndrome (one that Brayden was tested for). As he and his wife were trying to process all the new medical terms and adjusting to what that meant for their their son, one of the doctors pulled the dad to the side.

The doctor said something like this, I am not going to talk to you as the doctor, I am going to talk to you parent to parent...
Soon, you will not see the syndrome and medical problems, you WILL look at him and see your son.

We are often asked, how do we do it. We do it because he is our son. A love so strong that we see past the medical problems and things he cannot do...a strong love because he is our son.

New Nurse starts tomorrow

2011-09-14T16:01:00.000-04:00

Yesterday afternoon I meet with a woman that will be Brayden's new nurse. The agency that facilitates Brayden's nursing care, set up the appointment (love the ladies at the nursing agency). The nurse came to our house. She seemed very sweet and was incredibly kind to Brayden. I went through some of the basics for Brayden's care and she seemed comfortable with it all and ready to learn the things she was not. We discussed schedule. It all seemed to line up just fine.

After she left I called the agency and said we were ready to start with her. Thus she will be coming tomorrow afternoon to get Brayden off the bus and spend the afternoon with us learning the ropes.

The nurse will be with us M-F for 40 hours and going to school with him once a week.

In preparation, I pulled out all of our information on Brayden. In the past, I typed up info for his respite care and nurse. I had not looked at the folder in over a year, my how things have changed! I had to rewrite just about everything. I like everything in writing, so that if there is ever a question or concern, it can be looked up (especially if I am not around to answer).

Here is what I have in our packet:

Emergency sheet - we have this sheet every where (school, bag, car). Includes all important medical information like lists of medications, doctors, diagnosis. It is what we hand to the EMTs, ER doctor, or when being admitted to the hospital. Lots of info crammed on one sheet.
To do Daily Medications; To do Suctioning, Ketones, Blood Glucose
Weekly Schedule - an idea of Brayden's daily activities
Supplies - Cleaning, organizing, etc.
Info of his Tube and Seizures
Using the feeding pump
Ketogenic Diet mixture and information
Fact Sheet - fun little bits about Brayden's likes and dislikes, words he responds to, etc.
Diagnoses - brief explanations of his diagnoses
Optional - House Rules (I have not done this but I know several moms who do)

Yes, the nursing agency provides charts and notes for the nurses to fill out based upon Brayden's medical needs. This information is for the nurse to better understand Brayden.

Pray for this new nurse, that it will be a good fit for our family and Brayden.

Stand Tall

2011-09-13T16:31:00.000-04:00

Brayden was put in the stander this week.

He has not been in the stander since early March (before the broken femur, botox and hip problems).

When Brayden was first starting the stander, over one year ago, he would scream and fuss. It would take him about 10 minutes to settle down and be able to tolerate being upright in the stander. So, leading up to this week in the stander was me being worried about it. I checked with the physical med doctor twice to make sure that when she said "Give it a try", she really meant give it a try. We have learned that some doctors say "give it a try" and they are really saying "don't do it but you are the parent so I can't really tell you what to do." Anyway, Brayden got cleared from the physical medicine doctor and PT at Children's to try the stander again, despite the problems with his hip.

I was fully expecting Brayden to be mad/irritated/hurt/stressed/etc when put back in the stander after many, many months of not using one. I went to school to talk to the physical therapist and Brayden's teacher while we tried him in it. The PT scooped up Brayden put in the stander, I held my breath...

Brayden acted like it was something he had be doing all along. It took Brayden almost an entire school year, last year, to be able to tolerate the stander. He finally built up to being in it for 30 minutes or so. This time, trying it after his leg and hip problems, we set a goal for him to be in the stander for 10 minutes. About 5 minutes in, he feel asleep, standing up. He remained comfortable for 15 minutes, then they wheeled him down to the front office to deliver the attendance, wheeled him back to the classroom...still not a cry or even a whimper. He was in the stander for over 20 minutes without any problems.

Now the stander will be part of his daily routine. I guess he has grown up.

The Fun of a Haircut

2011-09-09T23:19:00.002-04:00

I enjoy getting my haircut. It is incredibly relaxing. If it was socially acceptable to fall asleep, I would. And right now I need the end of the summer, get all of the dead ends off, hair cut. One of these days I will make to the hair salon.

But today was Brayden's turn. In my perfect little world, Brayden would have had a fresh hair cut before the first day of school...to look dapper and all for the big first day. Well, that did not happen, we completely ran out of time. We get his hair cut at a little barber shop in a town the opposite direction of everywhere we go, so making time for his hair cut has proven to be a bit more difficult. And I put it off all this week because of the torrential down pouring of rain every day.

Today, I was determined to get his hair cut. Ask most parents of special needs children about hair cuts and I am pretty sure they would tell you that hair cuts are stressful. Propping up the child, holding them still, the clippers, scissors, hair flying everywhere (and no matter what Brayden seems to get in his mouth), not to mention all of the sensory issues...it is no simple task and certainly the opposite of relaxing.

We arrive, I put on a cape, Brayden puts on a cape and then I put him in my lap. He is certainly doing better with haircuts these days but holding his head, when he does NOT like his face to be touched, is still something that gets him mad.

I think I hold my breath for the majority of the haircuts. Praying that a swift head jerk will not result in a clipper creating an unforgiving line/cut or a wound from the scissors.

Today went pretty well. The proof:

Then home for a bath and he naps the rest of the afternoon...apparently the stress wore him out.

Let's revisit the first day of school

2011-09-09T12:35:00.004-04:00

Sure the pictures look great, everyone put together, ready for the first day of school.

Carter and Luke selected their clothes and shoes for the first day of school. Laid out the backpacks. All done the night before. Brayden's wheelchair ready with appropriate buckles and straps for the bus ride, backpack and supplies ready as well.

And the night before, Carter and Luke selected their choice for the first day of school breakfast. StarWars pancakes (Williams Sonoma pancake molds) topped with chocolate chips, bacon, eggs and fruit. I put out fun plates, cups/straws, place mats for the big breakfast...getting ready to make it all the following morning.

Went to bed, ready for the first day of school.

Around 5:45 a.m. I found out that Brayden's nurse was not able to make to our house that morning to help get Brayden ready for school and to go to school with him. I sprang into action and quickly grabbed a shower. Then woke Carter and Luke for their showers. Luke in my shower. Carter in the boy's shower. I quickly start getting Brayden's meds done, his food prepared and dressed.

Luke is dressed and I am wondering where Carter is...oh he was still in the shower...for 30 minutes! I just assumed he would get in and get out, I woke him in enough time for about a 5 minute shower. Apparently he was savoring that warm shower early in the morning. I shout at him to hurry up because he had run out of time to eat breakfast.

All the while in the back of my mind knowing that I wanted everyone ready in enough time for those first day of school pictures at the house and bus stop.

Then I realize that while getting Brayden ready, I ran out of time to make Carter and Luke's special breakfast. I had to think of something fun and special to do real quick. I run downstairs, grabbed donuts, squirted whip cream in the middle and put sprinkles on top (they also had healthy things). I thought it was fun, right!? Well, the boys thought the whip cream was gross on donuts and sprinkles were for ice cream.

Everyone ate breakfast, quickly. Brayden is busy sitting in his wheelchair, I am scrambling to figure out all of the straps (I should have done a trial run before the first day of school). Then Brayden proceeds to have a lovely vomit spell...no time for vomit people, no time. And I am praying that he does not soak into his clothes because there is no time to change him. Carter and Luke run to get him some paper towels for clean up.

Brayden's bus papers said that his bus would arrive at our house for pick-up at 7:03 a.m. It was 7:02 and we are wheeling his outside, still vomiting because I did not want him to miss the bus the first day of school. And I needed him on the bus so that I could get Carter and Luke to their bus stop by 7:17 a.m.

7:03 comes and goes, no bus for Brayden. But we now we have time for photos.
7:10 comes and goes, still no bus for Brayden. Carter and Luke decided to wheel Brayden to the end of the driveway so he is ready when the bus comes.

7:15, still no bus and it is time for Carter and Luke's bus. I cannot see the bus stop from our house so the majority of the time I drive them to the bus stop. This morning I could not drive them because there was no way I was going to get Brayden out of his wheelchair, undo all of the straps, pull off his gear and supplies to breakdown the wheelchair to load everyone into the car.

So we end up running down our street for Carter and Luke's bus stop...and understand this, we live on the side of a large hill/small mountain, our road is steep and going downhill with the wheelchair is NOT something I would suggest. At any moment I felt like he could have gone rolling away towards serious destruction.

About half way down the hill, we see a bus. It is Brayden's bus. I shout to the driver to turn around and meet us at the end of the road. The boys and I continue down the hill to the end of the street. Brayden's bus turned around and parked to pick up Brayden. I scramble to get Brayden on the bus, barely talking to the bus driver because I am frazzled, sweaty now and a bit out of breath. It takes a while to load Brayden on the bus with the lift and then put on all of the wheelchair locks that have to happen for safe and secure bus ride. Meanwhile, his bus is blocking several families from reaching the bus stop for their first day of school. Cars are parking and kids are running, parents following behind trying to get pictures.

Carter and Luke's bus arrive, all the kids load. Their bus pulls off. Brayden's bus pulls off. It was about 7:20 a.m. I then have to walk/climb back up the hill to get in my car to rush to Brayden's school because they are expecting Brayden's nurse to be getting off the bus with him. I flag down a neighbor who gives me a ride up the street. I hop in the car and dash off to Brayden's school (about 20 minutes away). Remember how bad traffic is the first day of school? Apparently everyone leaves for work right after getting the kids off to school. I make it to Brayden's school, explain that his nurse will not be joining him (praying that they are okay with it all). I talk to the teacher, aids, then the PT and the school nurse.

At that point, I am finally children free but not stress free. I load myself into the car and drive to the nearest Starbucks. I sat in Starbucks for two hours, barely doing a thing. For the first hour, I just sat and didn't even get coffee. I did my best to not make eye contact with anyone and praying that I would not run into anyone I knew because at any moment I felt like I was going to burst into tears.

I finally made it home. Brayden had a good first day of school, although he screamed all the way home on the bus. Carter and Luke were happy to be back at school. How I just needed that day to be over.

How Brayden does the rain

2011-09-08T12:32:00.000-04:00

Brayden's previous wheelchair had a canopy (much like a stroller) that we could cover him with to keep out the majority of the rain.

We do not take him out much in the rain because I have no desire to get soaked putting him and all his gear into the car, putting together his wheelchair and breaking it down again to load in the car.

However, on school days...well school is not canceled because of the rain.

It has been raining here non stop for too many days. A rain coat for Brayden does not do much good, it would just keep his shirt dry. What about his pants, his wheelchair? He has to sit in his wheelchair for several hours at school so it cannot get soaked.

The bus does come to the end of our driveway (which is not too long) but the wheelchair lift on the bus is slow and fully exposed to any weather elements. So what to do?

A poncho!

I kept a poncho (apparently a nice poncho that has snaps on the side...who knew there were nice ponchos) from a trip several years ago to Disney when I had no desire to get wet on a ride. I dug out the poncho and gave it a try for Brayden.

He was not too fond of the poncho, especially around his face. But I do like the way it accentuates his round cheeks.

He is dry. Wheelchair is dry. Hooray for ponchos!

Meltdown Explained

2011-09-06T17:52:00.000-04:00

I will do my best to explain where my head and heart are these days. This weekend was rough for me, everything was bubbling over till I finally exploded or imploded...whatever it was, it just wasn't pretty.

It all seemed to start in the spring/summer. Too many things going on to fully explain and frankly each one deserves a full blog post on its own.

: Brayden - when can we reach a plateau, a steady time with him? There is something to constantly do, a doctor to call, a problem to address. I naively thought he would only have one appointment this entire summer and trust me he had plenty more than that. His needs have become so complex. I am literally the only one who can care for him. Jeremy can only do so much, obviously because he works. I am the one to go to the appointments, handle the insurance, medications, supplies, etc. Which is totally fine but it has its moments of feeling isolated and too much pressure of being the only one "qualified" to make decisions regarding Brayden's care.

: Carter and Luke - I have been stressed this summer and unfortunately I feel like the fall out from that lands on them. I have been grouchy, then I am short with them. I PROMISED them at least three times this summer that we were going to an amusement park and every time something major came up for Brayden and we never made it. They are so patience and loving. I have had to apologize too many times this summer for not being more understanding and kind to them.

: Mother Bear - being protective of my children. Brayden has seizures and they are painful and frightening to watch. Yet, he has them ALL the time. And we hear terrible "warnings" about not recovering and/or breathing problems during or because of seizures. Brayden vomits violently too many times in a day. He has days when he is uncomfortable in his own body. As a mother, all you want to do is to make the pain go away...and when the best doctors are doing their best and this is what we have to "settle" for, then it hurts. I hurt for my child. And I want to protect Carter and Luke, praying that having a brother with medical needs doesn't damage or hurt them in some way. I never want them to feel like their are less of a priority.

: Jeremy - when he and I are off, the whole thing is off. He has been incredibly busy with work, more so than ever, even since I have known him. This summer was not filled with fun family outings and quality family time that I so wanted. It was consumed with everything else. Days would go by and we barely had sentences with each other. Not because of anything bad, just not enough hours in the day. Then with all fall activities (starting in Aug) our time was/is more consumed. I felt as though I could not/was not able to share my needs/emotions/stresses with him and holding way too much in to myself. And he has been too stressed to hear me.

: Double life - we live in the medical special needs world with a son whose needs require meticulous care and attention. AND we live in the "normal" world with Carter and Luke trying to give them every opportunity.

: Help - we had a bit of a rough summer with Brayden's nurse and unfortunately we had to say goodbye last week. She became part of our family. She loved Brayden. But it was no longer a good fit. Now, we begin the process of looking for another nurse (which took months last time).

: Stuck - Jeremy and I are not the best "lay around the house" people. We like to be out doing things. As Brayden is getting bigger, his equipment getting bigger and getting out get harder. Oh, how I want a fabulous trip just to get away. We joke that if we did not have Brayden we would probably spend too much money on traveling. However, it did help to have a pool this summer.

: Being a mom - as some point in being a mom you realize that your life becomes nothing about YOUR life but about taking EVERYONE else around you...taking care of your self quickly gets put to the bottom of the list. Being a mom is such a joy, loving your children and husband is precious, so most of the time you gladly put everyone else's needs first...but man it can be exhausting.

All of it just kept building up. All of the above came crashing down on me this summer. I know I put to much pressure on myself to get everything just right. I have high expectations for my family, for myself.

All I really need to do is just surrender...

Meltdown

2011-09-04T19:35:00.000-04:00

I had a meltdown of epic proportions last night.

A sobbing on the floor meltdown. A friend waiting in my driveway for a fun night out and I was inside having my meltdown. I had to send Jeremy outside to tell my friend I was not up for going out.

Lots of things building up, lots of stress, lots of pressure,...I will talk about later.
But all leading up to my meltdown of epic proportions.

Jeremy sat on the floor with me, held me, prayed with me.

A meltdown that was needed, just to let it all out.

Did the Botox help?

2011-09-02T15:16:00.000-04:00

Oh yes it did.
I go into Brayden's room in the morning, on many occasions and found this:

His sweet little, chubby feet poking out from his blanket.

His legs straight and he is comfortable. A huge difference from before the Botox. He legs were tight, so tight he was in pain and we could barely change his diaper and clothes.

Now he stretches out his legs, it is some relief and he has been trying to straighten them all along.

Could he be more comfortable!?

School Schedule

2011-08-31T12:37:00.001-04:00

This year Brayden will be going to school Mon, Tues and Thurs at Catoctin Elementary in Leesburg, which is not our community school of Waterford where Carter and Luke attend.

The bus ride is about 20 minutes. His bus arrives around 7:00 a.m. at the end of our driveway. Only one other child is on his bus (who is not in his class). Then in the afternoon, his bus arrives home around 12:15 p.m.

Brayden is in the same class as the last two years. But a bit of a change this year. There are only three children in the class so far this year. A new teacher, who was an aid in the classroom. A returning aid and a new aid, who is came over from the room next door. 3 adults and 3 children (all boys).

Brayden receives physical therapy and occupational therapy once a week. And has speech and vision therapy as consult.

Our goal is for Brayden to go to school on Wed as well. We will see how he does for the first semester then discuss adding the fourth day.

I like the routine of school for all my boys (and myself). Brayden gets to participate in fun activities that bring out a different side in him and help him mature and learn in his own way.

Second day of school:
1. Major blowout diaper, came home with different clothes on. I opened his backpack to find out why...and it was not pretty.
2. He had art! Did a little finger painting. Oh how I love it!

You can see how tired his eyes are when he arrives home.

Brayden's thoughts on school

2011-08-30T14:28:00.000-04:00

First day of school went pretty well despite the chaos of the morning. The report from the teacher was that he did just fine. He did cry all the way home on the bus. I wheeled him into the house to find out his thoughts on his first day.

I did not get a good reaction to asking about the bus but I did to asking if he wants a nap.

from Carrie Jenkins on Vimeo.

First Day of School 2011

2011-08-29T11:10:00.000-04:00

A bit of a chaotic start to the first day of school but Brayden made it there and seemed to be handling it all in a stride.
We made it outside for some pictures.

The bus finally arrived and Brayden was loaded onto the lift. He closed his eyes tight...as if in denial that he was going on the bus yet again.

I met him at school, he did fine on the bus, was in the auditorium for the entire school first day assembly and then back to his room. Not quite awake yet but seemed fine to be back at school.

I was already missing him last night. Having all my boys at school...so I got some extra cuddles before bedtime. I cannot wait to find out about their days.

We had Ice Cream

2011-08-26T10:19:00.001-04:00

Carter and Luke's Ice Cream for Breakfast party was a hit!

We had a wonderful time with friends in our wonderful community of Waterford. Lots of ice cream was scooped. Lots of toppings. Lots of fun. One little boy confessed to me that he had 4 bowls of ice cream!

Carter and Luke spent many hours preparing for the party. They sat with our photo book looking through pictures to hang up at the party to share about our time with Give Kids the World. They went to the craft store with me to find decorations.

They decorated a box for donations.

Carter helped prepare most of the food, rolled a lot of crepes. Luke was in charge of getting the candy ready (wonder how much he ate...). Then they both worked on a menu.

They selected items from Give Kids the World to give away as prizes. They set up lots of games in the backyard to play with their friends.

We had many, many friends come. It looks like over $2,000 was raised for Give Kids the World.

It did rain that morning...so no outside, no pool...everyone inside. Still having fun. All of the kids playing in the basement (which was not a total mess, maybe so many kids there was no room to get things out). All of the adults in the kitchen. Brayden in a side room, where it was quiet out of the chaos handing with some of his special friends.

Ice Cream for Breakfast

2011-08-15T18:07:00.001-04:00

Here is how we are having Ice Cream for Breakfast.

What to do with the kids all summer long? Clearly a question that any mom asks herself. I try my best to find fun and new activities to do with the boys. On those days at home, we all try to find creative ways to play.

One morning, while I was working at the computer, I saw Carter and Luke running up and down the front stairs. Each time carrying something out to our great room. They kept it a secret until everything was complete.

Then I was invited in.

They set up a store. Carter, meticulously organized things into categories while Luke gathered the items. They even set up a computer and "money machine" (as Luke said). Both boys insisted that we invite over friends to purchase items in their store.

They gave me a tour of the room. Then it came time to show me how they were collecting the money. They had a box. A box for the money to help "sick kids like Brayden". They wanted to sell the items to help others.

I remembered an update I received from Give Kids the World about the Ice Cream for Breakfast campaign (It really took place in July but we could not get it together by then). I explained to the boys that the store was not going to work but we could have everyone over for Ice Cream for Breakfast to help send money for some sick children.

If you remember, Give Kids the World is the village where we stayed for Brayden's Make-a-Wish trip. Probably one of the most precious, memorable places I will ever be in my life.

As a result, we are planning to host a Ice Cream for Breakfast party here at our house for our wonderful Waterford friends. If you would like more information just email efcarrie at aol dot com.

Or you can give in honor of Brayden! Give a scoop.

Carter and Luke are thrilled. We asked for a Ice Cream for Breakfast tool kit. Once the tool kit was delivered, the boys have gone through it so many times (so much that I had to put it up). We want to give back to a place that gave us priceless family memories.

Small Talk

2011-08-13T15:17:00.000-04:00

I definitely consider myself to be an out going person. I feel comfortable talking to just about anyone from little kids to the President (not the current one, I have not met him). I like talking and even prefer talking rather than email or texting.

However, small talk has proven to be difficult lately and I am sometimes left feeling awkward and inauthentic.

Typical small talk...
Hello. How have you been? So what's new with you? How is the family? What are the kids doing these days?

I answer the best I can and usually divert the conversation towards Carter and Luke's activities or about school for all three boys.

A couple of weeks ago, we ran into some old neighbors, our nice neighbors, while at a local pool. We went through the typical small talk and trying to catch up. Brayden was post hospital just by a few days and pre more doctor visits, etc. How can I answer those small talk questions? I do answer them but in a very generic way. Do people really need to hear or know all the medical things that consume our life?

I have yet to find a good answer to: How is Brayden doing?

That is a loaded question. If they look close enough, clearly he has a lot going on.

The vast majority of the time, I make things sound as optimistic as I can muster up (enter the inauthentic feeling). I never know if someone wants to know or if it is just questions to be polite. I never feel quite sure how much information to give...all of Brayden's things sound so medical/technical that feels like most people could not understand and I cannot fit into a nice sound bite.

However, sometimes those small talk circumstances can turn into something great. Last week while loading Brayden and his wheelchair into the car, I met a women who has been in a wheelchair for over 25 years and she herself was a special-ed teacher. 20 minutes later and I felt encouraged.

Another time I met another mom, while bargain shopping, who was a mom to a special needs daughter. Just an instant connection.

Questions, never bother me. I just want to navigate the small talk better. And you never know, sometimes God places certain people in at the right time for a good talk.

Botox done

2011-08-10T18:29:00.000-04:00

Brayden and I headed downtown to Children's early this morning, after a long night.

Had to change his feeding from his keto formula mixture to water at midnight. Then all medications and water flushes had to be done before 5:00 a.m.

On the road about 5:30 a.m. Brayden slept in the car and while we waited.

The TV was stuck in our room on one channel in one position. I watched Beauty and Beast (probably a favorite Disney movie of mine, oh if I could walk around a sing like Belle...)

Arrived for paperwork and pre-op. Talked with doctor and answered all those questions for the nurses the anesthesiologist. Then they wheeled him in for the procedure. Just as they were giving him the gas for sedation, he went into a lovely seizure getting his arms caught in the rails of the hospital bed. Seizures was done and gas mask on, he faded away into a deep sleep and I headed to the waiting room.

Great thing about the surgical center at Children's they give you a pager so the staff/nurses/doctor can reach you. Then in the waiting area a large screen posting the status on your child; listing if in OR, what time they went in and when it is completed (Brayden is the very top number).

The Botox was done in about 20 minutes, Brayden woke up about 45 minutes later acting normal. The nurse watched him a bit longer and then we headed home.

Botox in both hips, several in both hamstrings, a couple on the muscle on top of both his shins, one in each foot, and one in each arm. So far he does not appear to be in any pain but lots of little red dots from the injections.

Botox is done now the concern is his right hip. Even under sedation and after the Botox, the doctor could not get his hip in the proper place or straighten his right leg, not even close. So in a few weeks Brayden is scheduled to see the doctor would did the Botox (a Physical Med and Rehab Dr) with the orthopedic surgeon to really understand what is happening with his hip.

Thank you for your prayers. He handled the sedation great and the Botox seemed to go smoothly.

I am okay and Brayden

2011-08-07T16:14:00.001-04:00

Yes, I am doing fine. Last week was not my best week. A summer that was supposed have only one doctor appointment for Brayden has turned into much more. I feel overwhelmed at times but cannot even take the time to be overwhelmed because I have to be on my game at all times.

Brayden is going in for Botox in both legs, on ~~Tuesday~~ Wednesday. He will be sedated. Since he now has listed on his file, respiratory failure after a procedure (happened back in the spring), they take procedures WAY more seriously. Although it was my understanding he went into respiratory distress because of having two procedures, being intubated for both, in a matter of a couple of days. He has been sedated more times than I can actually count and only one time had problems. Anyway, Brayden had to have a pre-op meeting. Not over the phone like we have had before, this required a full trip downtown to Children's...a 2+ hour drive in traffic in which Brayden SCREAMED the entire way. Then at the appointment he went into a big seizure that he could not shake, so we gave him Diastat (emergency seizure med) and we waited. It lasted about 30 minutes. We were about to take the elevator straight to the ER and then he came out...we left the hospital knowing that if he went back into the seizure we would pass two other hospitals on the way home. I had to rush back to get Carter and Luke from camp.

Brayden was also fitted last week for a DMO suit. This is a full body suit, like a short sleeve and shorts wet suit. The idea is to provide much more stability to his core and help align his spine. I cannot even begin to explain it because I have yet to see one (you can check out this link, if you are interested). It required a lot of little tiny measurements. It will have snaps at the legs for diaper changing and flaps on his stomach for his two feeding tubes. The goal is for him to wear this suit all day, only off at bedtime. It sounds like a big pain but if it helps Brayden, we will certainly use it.

Then the vomiting....honestly I am just going to get him past the Botox procedure and then really talk to the GI doctor.

On top of things, my birthday was last week, which was just another day. Carter and Luke started their football season (practice every night), my car had big troubles and I spent quality time with the AAA guy because I could not even make it to the car shop...I felt like I was loosing myself in the chaos. And if I had one more person tell me they were tired, I was going to loose my cool.

Being a mom is a full-time job, any mom knows that...it is not something that ever stops. On top of that, being a mom to a special needs guy...well, it is all consuming. I operate at a level of stress that is just always there, sometimes it feels like it is just too heavy or times it is just "normal".

I am tired

2011-08-03T12:57:00.001-04:00

I am tired this week.
Tired of dealing with medical things.
Tired of making phone calls for all of Brayden's things.
Tired of being the ONE and ONLY person to make major medical decisions for Brayden (botox, vomiting)
Tired of Brayden vomiting all day long and through the night.
Tired of pulling the car over to take care of Brayden's vomit.
Tired of Brayden screaming in the car for no apparent reason.
Tired of being the ONE and ONLY person who coordinates all facets of Brayden's needs.
Tired of coordinating between Brayden's needs and Carter & Luke.
Tired of cleaning up after people.
Tired of not being able to catch up with laundry between the vomits, pool clothes, sports, regular laundry.
Tired of coordinating every one's schedules and needs.
Tired of disciplining the boys about the same things over and over again.
Tired of being the person to not only fix the problems but have to know how it became a problem to start.
Tired of every minute of my day being dictated by someone else's needs.
Tired of feeling like I come last.
Tired of taking care of everyone, when it feels like no one takes care of me (including myself).
Tired of counting on people that I cannot count on.
Tired of asking for help.
Tired of needing help.
Tired of feeling like I inconvenience people.

I know these feelings will pass, I will continue on with everything I do and everything I need to do...just having a down week.

Behind the Scenes

2011-07-27T09:57:00.036-04:00

A little insight into what we do during the hospital stays.

We try our best to take care of Brayden. We bring his noise-maker from home, a cd player (although his is currently broken), the movie Happy Feet, blankets from home, a couple of toys...whatever provides comfort.

Jeremy and I have date night. It is sad to say that our last date night was during the last hospital stay in the spring. Brayden is situated and usually falling asleep, we let the nurses know that we heading out to grab a bit to eat. Down the street from this hospital is one of our favorite restaurants, Sweet Water Tavern. We order an appetizer, dinner and dessert (trying to make up for all that hospital food). If we cannot leave the hospital, we at least dine in the cafeteria together.
I know Jeremy loves me because he knows my favorite thing from a hospital cafeteria is vanilla pudding (I know weird, right?). If he goes to get food and I ask him to get me something, he certainly brings me food, never to forget the vanilla pudding.
I always stay at the hospital during the day. Jeremy stays the night.
I like the nutrition center, a little room with snacks and drinks. I like to snack on dry cereal (sugary cereal that I never buy at home) and I really like the hospital ice with water.
Nurses make or break a hospital stay. The night nurse this weekend is apparently no so good. First night, Jeremy fell asleep in bed with Brayden. The nurse tapped Jeremy on the forehead to wake him. Tap, tap, tap on his forehead!
It is yet again July, the time for new meds students, first year residents...basically everyone "new" to their positions. You can spot the med students and 1st year residents...they carry a bag full of medical dictionaries or their coat pockets stuffed with references.
Photos. Many, many times, Jeremy and I have used our phones to send pictures back and forth to let each other know how Brayden is doing (or things at home). I also have my camera. If you are like me, you take lots and lots of pictures but never take the time to pull the pictures off the camera. Not having much to do in the hospital other than wait around, I tend to my camera...and of course take pictures too.
Yes, we get bored. At lot of time on the computer. I get a chance to catch up on blogs. Jeremy looks up fishing and hunting adventures and of course does work. There is not much on TV that keeps our attention.
Speaking of TV...it feels a little weird to watch an episode of Real Housewives or the Kardashians, when medical professionals are coming in and out of the room and you need them to take you seriously. I tried watching Fox News but those stories seem to be on repeat throughout the day. I found Discovery and TLC seem to be safe (unless it is a Toddlers and Tiaras marathon, yikes!).
At this hospital, for what seems like years, has 10+ channels that are stuck, meaning the picture does not change. Channels stuck with this lady in different positions and this man, who looks thrilled. I am tired of seeing their faces.

Being in the hospital is not only disruptive to our family but tends to be disruptive to Brayden's medical needs. The ketogenic diet is difficult unless we are at Children's so I bring stuff from home and explain it all to the nurses and/or doctors. Medications that he takes are not all available via IV, we have to compromise on which would work best, including seizure medications. Some of Brayden's medical needs like suctioning his stomach several times a day, are NOT typical things to do, we certainly get strange looks when we explain it needs to be done (inevitably, they still check with his GI dr). And apparently, crushing the pancreatic enzymes for his feeds is a bit different because we handle that too.
I always ask for extra supplies that we have a hard time getting from our supply company, it is our hospital swag bag.
We are getting way too comfortable with hospitals...happy to leave.

How we doin'

2011-07-26T13:53:00.000-04:00

We made it home yesterday evening...apparently there is an unspoken rule of discharging patients just it time to hit rush hour traffic. Thankfully this hospital stay was not too stressful. The staff at the hospital was great (minus one night nurse), several people have helped us in the past and stopped in the room to say hello.

Brayden is doing a little better. Still some pretty big retching spells last night and today. It seems as though the "gut rest" was not as effective as I was hoping.

Yesterday, Carter and Luke joined me at the hospital for the day. They think cafeteria food is great (so many options for them), they hit up the playroom, checked out a couple of movies, took turns pushing Brayden around the floor,...

They all eventually calmed down and settled into Brayden's bed for a movie. Do you see Brayden resting his arm on Luke's lap? Precious, melt my heart, precious.

Another day, another doctor

2011-07-25T11:32:00.000-04:00

Today, Brayden's regular GI doctor is at the hospital.

Brayden had a couple of retching incidents during the night and one this morning, however still much better than before we came in to the hospital.

The doctor is going to continue his feeds today and give his meds through the j-tube rather than IV to make sure he can handle it all. If he does, then we are all home late this afternoon.

Starting Feeds

2011-07-24T09:52:00.000-04:00

Brayden's hospital plans as of this morning:

Sometime soon, Brayden will be started on his feeds through his j-tube. His feeding pump runs at 42 ml/hr at home. To start introducing his food, he will be on 10 ml/hr for the first couple of hours, then 20 ml/hr for a couple of hours,...on up to 42 ml/hr. The hope is to try the food for the next 24 hrs to see how it goes.

Perhaps he will be home tomorrow.

He and I have wandered these familiar halls (our room is warm and the halls are cooler but he has his light-up fan from his aunt). We headed to the playroom and read some books. He placed his little hand on top on my arm, his little fingers covered with band-aids from getting blood.

Do you know what this means?

2011-07-23T10:31:00.000-04:00

Yes we are at the hospital, INOVA Fairfax. I brought Brayden in yesterday late afternoon. After a day of back and forth with the pediatrician's office and the GI office, the GI doctor found it would be best to bring Brayden in for some "gut rest". The idea is that his GI system needs a break. So nothing is put in him other than by IV...fluids and medications. The difficult part of this is being on the ketogenic diet. The ketogenic diet does not allow for any sugars/carbs in any way shape or form. IV fluids usually include dextrose and saline. The dextrose is a sugar. Brayden can only be on saline. Saline cannot sustain someone for very long...possibly not long enough for a good amount of "gut rest". They are monitoring his blood glucose to make sure it does not dip down too low because of only being on saline.
An abdominal xray was done, as well as blood work. We have not heard much about that so I assume everything is fine.

Brayden is still gagging/retching...we will see what happens as the day goes on.

This little arm wrap, a pediatric "No-No" is to protect the IV site...especially on Brayden. We always ask for lines to be on his right arm because sucking his left hand is his only way to comfort himself. Inevitably the best site ends up being in his left arm. He is not happy about the "No-No" because he cannot get to his hand and ends up banging himself in the face.

If I don't talk about it, maybe it will go away

2011-07-21T11:20:00.000-04:00

Now I am talking about it...it is vomit.
The constant vomiting is back, it is not pretty. Brayden has been retching violently for several weeks now. I barely mentioned it to the doctor but called this week with a desperate plea for help. At first, I thought it could just be a bad spell of the vomiting and it would fade away.

Well instead of fading it has been coming on stronger. The retching is loud and a miserable time for Brayden, happening over a dozen times a day. Anything seems to aggravate it; moving him, giving him meds, flushes, crying, etc.

I do not like to drive in the car with him alone because I cannot get to him fast enough if the vomit starts. Since he gets nothing in his stomach other than 1 medication, he vomits saliva and stomach juices. It has to burn. And lately has been showing some blood.

Last week I was in the GAP with Brayden when a good vomit spell hit. Oh it was loud and violent (think old poltergeist movies). At one point I thought we were going to get kicked out of the GAP.

Then this morning, after an early appointment for bloodwork, we headed to Target. I only needed one thing. I brilliantly decided to carry Brayden instead of lug out the wheelchair. Carter and Luke taking turns to carry my purse while I carry Brayden and his feeding pump. We barely make it in the door and Brayden starts to vomit. It comes rolling out. On him, on the floor, etc. Some sweet janitor man of some sorts ran to grab paper towels. He unrolled and unrolled paper towels to help me. More paper towels then I could ever use but he was being helpful. Brayden finally stopped and we got what I needed. I hopped in the car and inside my purse was more paper towels that the Target worker sent with us.

We tried to give Brayden a "gut rest", kind of break for his system. Yesterday 6 hours of no food, then 6 hours of Pedialyte. I woke at midnight to start up stop the Pedialyte and start the food. The blood work this morning will be checking his pancreas, which tends to be the problem during these vomit problems. Hopefully we will hear some results tomorrow. I am trying to avoid a hospital stay.

It's hip

2011-07-15T14:24:00.000-04:00

Brayden's hip actually. The appointment with the Physical Medicine specialist last week lead to a discussion about Brayden's hip. His right leg seems to be shorter than his left and his range of motion is not so good. The doctor ordered x-rays of his hip.

We drove to Children's yesterday for the x-rays. And I spoke to the doctor this morning, who also consulted an Orthopedic Surgeon before calling.

The x-rays are showing hip dislocation/dysplasia. His right hip is slightly out of place, possibly due to muscles around pulling too tightly. But also, the top of the femur, the very top that looks like a ball resting into the hip, is not forming properly. What this means, I am not sure yet.

We do have somewhat of a plan. Brayden will be scheduled for Botox injections, for both his legs. This will relax the muscles and we can continue to work on strecthing his legs out. About a month or so after the Botox, Brayden will see the Physical Medicine Specialist and the Orthopedic Surgeon for an appointment. More x-rays may be done, look at the results of the Botox, discuss options/prognosis and possibly surgery.

I have no idea why Brayden's bone has not formed properly. There is discussion about a bone density test being done. I am not sure what the orthopedic surgeon may need to do. Still questions.

Brayden does seem to be bothered by his leg. At first I thought it was because it is the leg that was broken. But he screams in the car seat, will not lay comfortably on his right side and does not want us messing with that leg.

I have a full time job

2011-07-13T13:48:00.000-04:00

Jeremy teases me all the time about getting a job.

I work part time for my father (he is a consultant now in his own business since the EPA). I volunteer/work for the church coordinating the nursery. I volunteer at the boys' school. I hope/plan to work on the accessible park project (which is on the back burner with the county) for which I am the co-founder/director.

I am a mom to three boys. Three busy boys. Carter and Luke have camps, sports, activities...
Brayden has doctors, therapies, appointments, too many unexpected medical problems, etc...

But what feel like my full time job some days is managing Brayden's life. I sat in the study one morning this week to go through the paper work, just a few months of it, for four hours straight. We get something in the mail from his insurance about every detail, every day..."Explanation of benefits" or "Approvals" for nursing hours, medical supplies, feeding supplies, medications, doctor appt, labwork, hospital, therapy, etc. Everything comes with paperwork. Then we also get paperwork for each thing from the supplemental insurance too. Each item gets its own paperwork. Do you have any idea how much paper that is in one month?

Then we have the delivered medical supplies. I have to call and order them but not all at the same time because insurance cannot process it all at the same time. Once the supplies are delivered we have more papers in the boxes. More often than not the deliveries are messed up/incomplete and spend more time on the phone trying to fix it and get the correct supplies in a timely manner. We also get diapers through another medical supply company so more time on the phone with them too.

Then the doctors. labs and hospitals. Coordinating the appointments can bring on a headache...just call the Children's line for kicks, see how that goes...making appointments is usually torture and requires more patience than I usually have. I have to check in with a couple of Brayden's doctors by email/phone once a month, too. Then the paperwork for the doctor and hospitals. We have had the same two insurances for Brayden for sometime now, yet still we get billed all the time. Either it is not processed through the primary insurance correctly or not sent to the secondary insurance. We get the bills, I have to call billing and explain it all again, then call insurance to make sure it gets processed properly. This happens ALL the time.

Medications, I run back and forth to the pharmacy usually 4x a month. Calling in the medications becomes a pain. I am tired of listening to the automated system...I do this 8x a month. Sometimes medications have problems being processed through both insurances...more phone calls.

Then we have meetings with Brayden's case worker, service coordinator, school, nursing agency...

It feels like it is never ending and I am never caught up. It is a full-time job. I need a cool job title. Although I do like being called Brayden's mom (and Carter and Luke's too).

Give me the Pool

2011-07-12T07:33:00.001-04:00

We are now the proud owners of a pool.

We have a large pool in our backyard now (after too many months of frustrations during the build). If you ask Jeremy, he will tell you that this pool was built for Brayden. The pool has a nice ramp along the side that we can take Brayden in and eventually the possibility of a water wheelchair.

The pool is already a nice temperature that is just right for Brayden. Oh how he loves the water. He has been spending hours in the pool, his little fingers and toes all pruned.

He floats very nicely on his own, we just have to hold his head. He relaxes so much, that he has been known to fall asleep in the pool, even with his two older brothers splashing around.

Let's talk Botox and Buttons

2011-07-10T17:14:00.006-04:00

I was under the assumption that we would have a normal, relaxing summer.
If you think my normal days are anything but normal well then...

I having been discussing Botox. Botox with Jeremy, friends and doctors. Botox is NOT for me. It IS for Brayden. Botox is used to relax muscles. Under sedation, needles of Botox are incerted into the muscles. This is something that is being discussed for Brayden. As he is getting older, he legs muscles are getting tighter and tighter, causing a bit more difficulties. We visited a Brain Injury Clinic at Children's, at the clinic we meet with a Physical Medicine Specialist, a Physical Therapist and Neurologist (who happens to be Brayden's primary neuro) all at the same time, in the same room. They looked over Brayden and talked with me for over on hour. Lots of information, too much to share right now. But Botox is on the table for discussion.

Then the following morning, I am doing Brayden meds, flushing the feeding tube lines, when I realized the button for his j-tube (intestine) was coming out. I have changed the Mic-Key button a few years ago when Brayden had only a g-tube. I was not sure if I could or should change the j-tube since the intestine is more sensitive than the stomach. Of course, it was Saturday morning and there is no one to call so I tried the on-call GI doctor but did not get through. So I called a friend, we discussed Botox and she gave me a refresher on changing the button. I hung up the phone, got all the gear ready and I changed it.

Now take a step back for a moment. I am at home, pulling a tube out of my son's intestine, leaving a large gaping hole and then I slide in a new button. YIKES! When I thought about having children, I had no idea this could be a possibility.

The tube works just fine...I checked it just about every hour that day.

Yes, then we proceed on to our regularly schedule activities, like parties, pool and running errands. All right after a major medical discussion and changing out tubes from holes in the body. Then people ask, "What did you do today?" Me, "Not much."

New Wheels

2011-07-08T08:05:00.000-04:00

Brayden's new wheelchair has arrived. It is a Zippie Iris.

He sat in the chair while everything was adjusted and he seemed to be really comfortable. We will use this for every day out and about, the school bus, school, etc. It will be Brayden's primary mode of transportation. It comes with a tray and a canopy, both of which are massive will take some getting used to.

It is a real wheelchair. It is heavy (I will be getting a work out to get it in and out of the back of the SUV). The new chair should last him quite a while. It will be much more comfortable for him since he has really out grown his first wheelchair. The equipment rep working Brayden and I for over an hour getting it adjusted and giving me a tutorial on using it, we even practiced getting it in and out of the car.

We are thrilled for Brayden to have the new chair. It is snazzy!

His first wheelchair was the Kid Kart, which he got shortly after turning one year old. The Kid Kart was a good transition into the world of wheelchairs. It operated much like a supped-up stroller.

In fact his Kid Kart was often mistaken for a stroller. We had been told, in several restaurants, that they do NOT allow strollers. We try to politely respond to them explaining that it is a wheelchair.

During our recent trip to the beach we went to a dinner show. A dinner show that Brayden could not see because accessible seating was in the way back and food he could not eat since feeds only with a feeding tube..we paid full price (dinner and show) for him however we were paying for a family night out and I would rather us all be together. On our way into the dinner show, we are stopped at the front door...we have to explain, "It is not a stroller, it is a wheelchair." We go to will-call to pick up our tickets, we say again, "It is not a stroller, it is a wheelchair." We go to hand in our tickets to proceed into the venue and again we are told, that they do NOT allow strollers. And again we say, "It is not a stroller, it is a wheelchair." We think we had made it through when a man working there comes running up to us saying (and somewhat out of breath), "I am sorry but you are not allowed to take strollers in." By that point, Jeremy, myself and Brayden's nurse all respond with, "It is NOT a stroller, it IS a wheelchair." I then ask for a sign or something to hang on the chair so people will stop asking us. Trust me if we did not have to use this, we would not...and we are not trying to sneak in a stroller.

My Grampy

2011-07-05T07:34:00.001-04:00

My Grampy passed away. A sweet loving, God-fearing man that we will all miss.

Check the family blog.

Brayden knows how to work it

2011-07-01T21:14:00.003-04:00

By it, I mean his great-grandfather. For a boy who cannot communicate much, he certainly got his great-grandfather wrapped around his chubby little finger.

Jeremy and I were putt-putting with Carter and Luke. Great-Grandpa was watching Brayden. When we started the course Brayden was in his wheelchair.

We came around the corner finishing up the game and we found them.

Quality bonding time under the umbrella...not sure who napped more...

Excuse my hair...I have not figured out how to pull off beach hair.

Happy Camper

2011-07-01T20:43:00.001-04:00

Yes, we went on a trip to visit my grandfather in Myrtle Beach. Yes, we went camping...sort of...we rented a trailer (surprisingly nice) to stay close to my grandfather who has a camper on a campground right on the beach.

Brayden is apparently a fan of Myrtle Beach.

He floated in the waves one afternoon for a long time. We gently held him and let him rock up and down with the water. He was only happy if he could lay down in the water.

If we tried to sit him up at all, he would push his head back until he was in the water. He almost looked asleep from being so relaxed.

Later he did the same thing in the pool. He loved the water. His nurse found him a float that he relaxed in for a long time. Could he look more relaxed?!

Brayden enjoyed the beach life. Hanging out in his jogger stroller, fan blowing and naps whenever he felt like it.

These two

2011-06-18T17:07:00.001-04:00

Special needs is a thread the runs through the Jenkins family. This lovely lady is Aunt Janine. Jeremy's aunt.

She has provided the Jenkins with oh so many hours of entertainment, laughs and joy. You can truly see why God provides families with children such as these.

Here these two are staying away from the bugs at the farm. Aunt Janine promised me she would shoo away any bugs that bothered Brayden.

To have big brothers

2011-06-18T05:57:00.001-04:00

Inevitably the youngest of three boys is going to be tough because of having the older brothers. Older brothers take their little brothers on adventures and push them in ways that perhaps they would not try (nor mom and dad would either).

Case in point, I am home with the three boys. All three playing in the family room. Brayden in a large bean bag while his brothers play around him. I am upstairs and come out to the landing of our two-story family room to find it empty...Brayden too. I shout out, "Where are you guys?" Carter responds, "We are taking Brayden to the great room but just taking him for a ride." My heart rate increases a bit, wondering how they were moving Brayden...Did they try to carry him? Is Brayden okay?

I hurry downstairs to find the big boys pulling Brayden around in the bean bag. Brayden is happy as can be. I thought he would not like to be pulled around, especially since the cast has just come off. Carter and Luke are taking him for a ride and the dog was following behind them all (I did push the dog out of the way so I could get a picture of Brayden).

A little adventure for Brayden.

Last Day of School 2011

2011-06-16T15:52:00.000-04:00

Brayden finished up his 2nd year of preschool at Catoctin Elementary. He was happy this morning, kicking his feet and making noise (happy to go to school or that school was done...I am not sure but Carter got a picture of it).

It seems as though he missed quite a bit of school this spring between hospitals, ER, doctors, broken leg,... Still, we sent him when we could. He seemed to be handling it all pretty well towards the end of the year.

One more year left of preschool...

Birds of a Feather...

2011-06-14T15:37:00.002-04:00

Brayden had a special art program at school this week. Lots of fun textures with model magic, cotton, feather, nuts, etc. The idea was to make a bird with lots of fun things to touch and feel.

Luke and I helped Brayden make his bird (I think the bird looks like an old lady going for tea).

Brayden was having such a great time. Lots of smiles from my precious boy.

Cast Off

2011-06-13T12:32:00.000-04:00

We headed for the orthopedist early this morning.

Brayden started the day with pants and a cast. The pants were gone because of a diaper blow-out, during rush hour traffic on the beltway (momma did not pull over for that one so there was leakage).

The cast came off because the x-rays looked good. Showed lots of bone growth.

His leg looks so little. The cast was a bit dirty inside (perhaps collateral damage from diapers!?).

Brayden handled it all pretty well. His leg is stiff, there is a big bump where the break was and a tiny bit of skin breakdown. There will be physical therapy and putting him back in the stander. But all in all, he is happy (so far) and so is mommy! And Luke was a great helper, being very patient and holding Brayden's hand because he "had done it before"...is what he told me since he had his cast off last week.

Out for Fishing

2011-06-12T22:02:00.000-04:00

Brayden and I joined the boys on the farm for a night of fishing.

A cookout at the historic farm house then head to the pond.

Brayden was supervising from his chair...fan and all.

Then, hopefully, the last night with the big blue cast.

The Smells

2011-06-07T14:26:00.002-04:00

First, Brayden's appointment to get his cast off is not until Monday now...not sure why, I talked to the scheduler today and his is on for Monday.

Second, Luke got his cast off this morning. In a brace for a while but no cast.

Luke's cast certainly contained dirt, leaf particles and general funkiness, yes it did smell. And his was water proof.

Brayden's cast is not water proof (different ortho dr). The cast goes all the way up to the diaper line. The top on his cast is definitely a bit discolored. Thankfully no major diaper blowout that seemed to seep into the cast but still the cast is showing some collateral damage from diaper changes...gross I know. I have a feeling his cast will be a bit smelly too.

I tend to be a person that smells/scents trigger a memory or reaction. Most of the time a candle is lit in our house. I do not like the way the house smells after dinner is done and the smell lingers. Jeremy sent me flowers for our anniversary and just the fragrance of them feels romantic. I have a lotion that reminds me of summer camp (it smells like Skin so Soft). Walk in Abercrombie and it reminds me of college...the store was a bit hit when I was in school and seemed like everyone around smelled like the cologne. The smell of a fire in the fireplace, immediately makes me cozy. I realized the other day that the smell of the hospital once bothered me but I do not even notice it anymore. As the warm weather comes, I step outside and a breeze passes filled with the scent of honey suckle. The smell of honey suckle warms my heart, like a reminder of childhood and playing outside...probably one of my favorite scents.

You hear people talk shortly after a loved one has passed, they find things that smell like them, remind them of them; an old sweatshirt, the pillow, etc. A fragrance of that person, finding comfort and memories in that smell.

Brayden tends to smell like his formula and/or his diapers (the smell lingers). He has moments just after the bath when he smells good, like his soap and shampoo. Hopefully his leg will not be too bad when the cast is finally removed.

I wonder what he smells. I have always thought that those with vision impairment had their other senses heightened. Does he smell me? Daddy? His brothers (who tend to smell like dirt and sweat lately)? The school bus? School? The hospital?

Nothing is more memorable than a smell. One scent can be unexpected, momentary and fleeting, yet conjure up a childhood summer...Smells detonate softly in our memory like poignant land mines, hidden under the weedy mass of years and experiences. Hit a tripwire of smell, and memories explode all at once. - Ackerman

Do you see what I don't see?

2011-06-06T15:46:00.000-04:00

I do not see ribs poking out. This yummy tummy is looking good.

Brayden appears to be gaining weight. Thank the Lord.

He feels like he finally has meat on his bones...bones that are no longer protruding and causing his discomfort.

We just cannot weigh him because of the massive cast. Once the cast is removed (Wednesday!), the first thing I want to do is weigh him...well after some good cuddles.

A week without anything

2011-06-03T19:18:00.000-04:00

I have not blogged this week because I have been actually enjoying the week. Finally a week without any appointments, labs or unexpected visits to the doctors. I did not even make phone calls for insurance, medical supplies or pharmacy trips. It feels like we have not had a medical free week in months.

Brayden went to school one day this week. I had to drive him. He does not fit in his wheelchair because of the massive leg cast. Which means...no wheelchair, no bus ride. Luke and I dropped Brayden off at school for a couple of hours, in his jogger stroller. Brayden did great, although he was so tired he fell asleep before we even got to the car.

The rest of the week, I ran actual errands...not rushed. Talked to with friends...not rushed. Had a couple of meetings (while catching up)...not rushed. I felt like I could breathe. I picked up some new outdoor furniture, assembled it. Then Luke and I painted some furniture outside (we made a mess).

Brayden has been in a great mood this week. His nurse took him for long walks and sat outside enjoying the nice days.

I felt like I was in a great mood this week.

Now countdown to Tuesday, Luke gets his cast off and then Wednesday, Brayden get his cast off!

School Picture

2011-05-27T15:22:00.000-04:00

Brayden's school picture arrived this week.

He looks thrilled. I think this is the way he looks most of his days at school...kind of annoyed.

School is good for him but I am not sure we have convinced him of that yet. He has some good days. I do know that he likes school and the routine of it all.

The IEP for next school year has been completed. He will be on the same schedule as this year. 3 days a week but a possibility to move up to 4 days a week, depending on how he handles it all.

Unfortunately, Brayden has missed a lot of school in the past few months. Hospital a few times, the ER a few times, many doctor appointments and now a leg in the cast.

Hopefully next year will be better.

2 week Countdown

2011-05-25T20:27:00.000-04:00

Went to see the ortho for Brayden this week, looks good, femur is healing nicely and two more weeks in the cast.

Went to see a different ortho for Luke this week, looks good, the arm is healing nicely and two more weeks in the cast.

Brayden's cast removal maybe difficult. The physical therapist and orthopedist warned me that he will probably be pretty uncomfortable when the cast is removed because he leg has been in that position for so long. The orthopedist recommended physical therapy. I told her that he gets it at school but even though school will be out shortly, the PT will help us with activities we can do at home...particularly get him in the stander as soon as possible. Oh boy...

Just the past couple of weeks, I have had Luke and Brayden with me out and about (mostly for doctor appointments). We look terrible. Luke with his arm cast, Brayden with his leg cast and I feel like I have terrible dark circles under my eyes. When asked what happened by many people, I have not been quite sure where to start. Could I just say we were in an accident?! That seems like an easier answer...we were kind of, over and over again...

He's got Happy Feet

2011-05-23T15:54:00.000-04:00

Well, not really. But he has the movie and some really cute toes peeking out of the cast.

Brayden is slowly adjusting to having his leg in the cast. He is getting a bit more comfortable being moved around. At first, he only wanted to be in bed, not to be touched or moved for any reason. The past few days, he has briefly been in the car and a jogger stroller. Brayden does not seem to fit in his wheelchair with the big cast so Jeremy dashed out and picked up a fancy schmancy jogger stroller that could accommodate Brayden (and we could still use for Brayden at the boys' sporting events and our outdoor adventures). At night, he has being crying for us to come shift him a little so he could be more comfortable.

As for Happy Feet, last week we discovered that Brayden enjoys the movie. A little portable DVD player in his bed to watch the movie. I think he likes this particular movie for a few reasons: it has LOTS of music and he likes music; the movie colors are pretty simple, black and white because it is all about penguins; and the vibrations of the actual player, Brayden lays his arm right on top of the player. Several times, he has fussed/cried when the movie came to an end.

Do you wanna know how many times he has watched the movie?

Many, many times. He deserves to be spoiled with his Happy Feet.

Big Blue Leg

2011-05-18T16:47:00.001-04:00

The appointment this morning was successful.

An early start...I loaded all three boys into the car shortly after 7:00 a.m. Carter for the bus stop. Luke for a neighbor (who had him over that early!). Brayden and I heading to the orthopedist.

Rain, and lots of it, had been coming and going since the wee hours of the morning so we left pretty early because rain does some damage to the traffic in the Washington DC area. Thankfully the traffic was not too bad because we arrived 30 minutes before the office opened. We were the first ones in, first on the sign-in sheet and first for the cast.

Brayden did not handle it all too well. He screamed until he fell asleep in my arms, of course before the doctor came in.

The orthopedist reviewed the x-rays from the ER. Yes, a break in the femur.

Time for a cast. Choice of color, blue. The tech removed the temporary splint and it had already bruised his shin and cause a spot of skin break-down. Then the doctor gently pulled on Brayden's leg to straighten it a bit for the cast placement. Did I mention Brayden is screaming in pain? The cast was gently wrapped around and around, from his toes to the top of his hip. Brayden still screaming. I did pack an extra dose of Tylenol with codeine.

The cast dried and then he had a few more/better x-rays.

Thankfully the break in the femur is not too bad. Brayden could have the cast on for only 3 weeks.

The cast seems to weigh more than his does. Picking him up, putting him in his wheelchair, loading him in the car, carrying him up the steps, putting him in the bed...all very awkward and while trying not to upset him anymore. He is not too happy this afternoon. He screamed all the way home from the doctor.

He is not pleased with having a cast.

Answered prayers that we got in with the orthopedist quickly this morning, that the break is not too bad, they could straighten his leg in the office, it is shorts season and we do not have to struggle to put him in pants.

Tears of Frustration

2011-05-17T14:21:00.000-04:00

Brayden is still in his splint. We have yet to see an orthopedist.

Starting back on Sunday, I found out that Brayden's orthopedist was out of town for a few weeks. I spoke directly to the doctor covering for her. I asked him if we could still get an appointment early in the week. He told me that the office was double booked. I asked him if we could come first thing and wait for an opening. He told me that if we showed up, he would send us to the emergency room because there was no way he could see Brayden.

Sunday at the ER, the orthopedist who was at the hospital, did not come to see Brayden because he was in surgery. He sent another orthopedist (whom I am not sure handles pediatrics or office hours).

Brayden was discharged with a VERY temporary splint because his leg was not straight, in fact bent all the way up...we were told was not the proper placement for the bone to heal and needed an appointment to get better x-rays and placement. We waited in the ER for an additional 1.5 hours for the x-ray film...knowing that we did not know which orthopedist Brayden would be seeing and if they had access into that hospital's system. Well the hospital's system was down and ten minutes turned into almost 1.5 extra hours of waiting and we still did not get the film. We were told the film would arrive by Fedex overnight.

Monday morning, the pediatrician and her nurse started calling around for an orthopedist who could handle Brayden. After many, many attempts by them, any available appointments through doctors at Childrens or Fairfax were at least 2 weeks or even one month out. We settled on the idea that we could take Brayden to a local orthopedist (an office that Jeremy has been to for his arm and leg in the past). The local orthopedist could handle the immediate concerns...like the pain of a broken leg, and then we could follow up with more the specialized orthopedist if needed.

This morning, the films did not arrive yet. But we still headed to the local orthopedist appointment. Brayden was NOT happy to be leaving the comfort and support of his own bed. We arrive at the office, I sign in. A nurse comes up to me and says that they cannot see Brayden. WHAT?! Brayden is screaming in pain in the waiting room. We dragged him out and they cannot see him. Why?

I was told that this office could not handle this kind of case and they would refer us to someone at Fairfax (um, the doctor offices that we have already been trying to see). Why is there something about Brayden and his leg that they could not handle? (I am glad they did not try something on Brayden if they could not handle it)

Jeremy immediately went out into the hall and started calling other doctors to find another appointment. He got in contact with Brayden's original orthopedist...who, guess what...is in town! I have no idea why the doctor on call told me she was out of town. At first their office told him that Brayden could not be seen until the end of next week. Unacceptable. Jeremy pushed and Brayden kinda, sorta has an appointment tomorrow morning at 9:00 a.m. We will be showing up and waiting around as an add on.

Meanwhile the x-rays film had still not shown up so Jeremy decided to drive to the hospital (an hour away) to pick up another copy.

I feel terrible for Brayden. He is uncomfortable. His leg is a mess.

The orthopedist ordeal has been an ongoing issue for us since the fall. We have not been terribly happy with Brayden's current orthopedist's plan of action for his care (prior to the leg breaking). We had been scheduled to see the creme-de-la-creme doctor but canceled once because we waited in the office for over 2 hours. Then the second chance with him ended up being when Brayden was in the hospital for his feeding tubes. We asked for an orthopedic consult during that hospital stay but never got one.

Then in an emergency situation...like a broken femur...we still have problems getting an appointment, not just with that doctor but seemingly any specialized orthopedist.

Over the past four years, I have probably scheduled over a hundred appointments for Brayden. Never have we had such difficultly. Is it something about the orthopedic world?

I have a headache and am incredibly grouchy. Thankfully Brayden is sleeping peacefully and I am going to fix myself a cup of hot tea on a gloomy day.

Broken Femur - Can we get a break? Part Deux

2011-05-15T19:07:00.001-04:00

Brayden has a broken femur.

Here is the story...

Yesterday I was dressing Brayden. He seemed to be a bit tight, making it harder for diaper and clothing changes. I pulled on his leg (as I always do) to help pull up his pants. He let out a yelp and was not happy. I just figured he was having a "tight" day. He and I left for a soccer game. Brayden continued to be a bit miserable but that seems to be his m.o. the past few weekends. We returned home.

I was putting Brayden down for a nap and decided to put him in the knee immobilizers (leg braces) to help him get a good stretch, as we do on most days. I got his left leg in the immobilizer and started on the right leg. He started screaming the moment I touched him and I realized his right leg was swollen.

Jeremy and I decided to wait it out through the night and see how he looked in the morning. Well, Brayden did not make it through the night and needed some help with the pain. I was alternating tylenol and ibuprofen. Then this morning I talked with a friend whose daughter has dealt with something similar, then called Brayden's orthopedist. The orthopedist is out of town for a while so another doctor answered the call. We were told to go to the ER.

We packed up and headed to the Fairfax ER.

Brayden whimpered on and off for the car ride. Once in the ER, x-rays were ordered. However they could not get a good picture because they could not get his leg straight. Brayden has been holding his leg very tight in the frog leg position. The couple of x-rays they were able to get showed a broken femur. Although they could not tell how serious and extensive the break is in the bone.

The ortho on-call was in surgery so he sent another ortho (who do not seem to be with peds). At first the plan was to sedate Brayden in order to straighten his leg to get an x-ray and put on the splint. Then the doctor came back and it was decided to splint Brayden's leg in the bent position.

Brayden is home with the splint. We wait for the morning to make a call to get an appointment with the orthopedist, hopefully in a couple of days. Then they will try to get more x-rays and do a cast.

Brayden has moments of pain. Any movement of any kind really seems to cause pain...diaper changes are fun. The splint seems to help and we will be giving him some pain medication.