He was not so Merry for Christmas

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

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

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

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

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?

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

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

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

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

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

Giving back at Christmas

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

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

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

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

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

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

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

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

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

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.