Let me complain about Dr. offices...

We spend a lot of time in and out of doctor's offices. Today we were in one. We waited a long time so I had time to think...

I have come to know the parking areas, walk-ways, elevators, bathrooms, waiting rooms, triage (or whatever they call the room before the room), and patient examination rooms.

If I ruled the world, or at least ran of doctor's office/building here is what I would do:

1. Valet parking, everyone should have valet parking. The parking lot for us to today was terrible, it is always terrible. There is a petition circulating at this office complex demanding more attention to the parking problem. This particular parking lot has brought me to tears before, made us late many times even when we have arrived before the appointment time and even been yelled at by a "sweet" old lady jockeying for a parking space.

If not valet, need more handicap parking (and people that actually needed could use it). I need space to get Brayden in and out of his wheelchair without being in fear for his life or at least knocking another car with the door or wheelchair.

Also, for those waiting for me to back out of my parking space, be patient. It takes some time to load Brayden in, get his feeding pump situated, buckle him and load his wheelchair. Staring me down or flashing your lights is NOT going to make me move faster, it will only get me flustered and take more time.

2. Walkways need to be that...walkways, not extra places to park nor places that mean speed up. For those driving they need to let people cross the walkways, remember pedestrians have the ride of way.

3. Elevators that have the doctor office listing inside it, so many get lost just riding the elevator. And please make sure those elevators work and do not creek...I cannot handle a creaky elevator.

4. Bathrooms...hmmm. I was chuckling to myself today when I was rolling Brayden into a "handicap accessible" bathroom. The door was huge and extremely heavy. I had to prop the door open with my bum and hoist Brayden in his wheelchair, over that awkward bump in the floor transition. Then coming out, well I almost took off my ankle with that heavy door.

5. Waiting rooms are never fun. Lots of people around and waiting. Most of the doctors we visit have a very strict policy of arriving for your appointment on time, if you are 15 minutes late, they will cancel your appointment (even if you have been driving in a terrible NoVA ice storm and it has taken 2 hours to get there). They will cancel it. Rescheduling for the specialists are at least 3 months out. So why doesn't it apply the other way around? Today we sat and waited and waited 45 minutes after our appointment time. That is incredibly frustrating and happens more often than not.

6. Triage - where they do height, weight, temperature and blood pressure. I have one request...please get a scale for disabled children, ones that cannot sit up on their own, a scale that will hold them. I DO NOT enjoy standing on a scale, weighing myself, then weighing me holding Brayden to find out how much he weighs. Not fun.

7. Patient examination rooms are always boring and give a false sense of hope. Hope that is in thinking the doctor will be in soon. Finally you make it back from the waiting room and then sit in the exam room, waiting.

I am done with my complaining. I feel better. Till the next appointment.

Brayden's 1st Art Project

Brayden did finger paints at school last week. It was his first experience with anything like that...and it seemed as though he did pretty well. It came home with him today.
This has to be the best thing to ever come home in a backpack!
This will be framed for sure!
Brayden's 1st artwork...

What are you thinking?

Being a parent of a non-verbal child is hard.

Hard to know what they are thinking, what the want, what hurts, how they need help, what they want to do.

Sure we get ques from him. It might be a little head nod or a kick or even a cry. But it always leaves me wondering what Brayden is really thinking.

Is he telling daddy to hold him more? Is he telling Carter to read him more books? Is he telling Luke to be quiet? What is he telling me?

I am sure that Brayden understands much more than he lets on. While I do not think, he thinks in a completely coherent way or even the same as other 2 year olds, he does have opinions and thoughts about his world and however he processes it.

I saw the video about a non-verbal autistic girl. It is extremely different from anything Brayden is dealing with other than being non-verbal but it certainly makes you realize that these children are in there...some where, wanting to make it better and be understood.

Dare I say...

...we made it through the week. Everyone where they need to be, the right place, the right time. Everyone at school, no phone calls, no one crying (including me).

We made it through the week...without any events! Uneventful, I like that.

From the big brothers

Carter is almost seven, Oct 8.
Luke is almost five, Nov 30.
They will both let you know that.

They are wonderful big brothers to Brayden. We get lots of comments, thoughts, questions from them about Brayden. Usually at times that we are not expecting them.

Carter hits us with the big questions.

Sitting around the table in a local Chili's with some family, over some chips and dip, Carter whips out this one...

Why did God make Brayden blind?

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Luke, well you never know what is going to come out of his mouth because whatever thought he has, he speaks it. One of our recent conversations:

Me (with a loving scream):
LUUUKKKEE! DO NOT JUMP FROM THERE! I DO NOT WANT TO GO TO HOSPITAL!

Luke (in a very calm inquisitive voice):
Which hospital? The one with video games!? Is it the one with the big cabateria (how he says cafeteria)!? You know that they have ice cream and chips there?


These are glimpses into their personality and how they interpret Brayden's world.
There will be much more of this to come!

Daydreamer

During a weekend nap on a family room couch, Jeremy dreamt that he looked up and saw Brayden standing at the top of our back staircase landing.

When he told me about his little dream, my stomach turned. It just seemed unsettling to me. I feel like the Lord protects my thoughts in even letting my mind wander to if Brayden was a "normal" two year old, running/walking all over the house. I rarely think about it. Even if my mind starts down that road, I try to put it at a screeching halt. It does us no good. Brayden is who he is...who God created.

Although I did try to imagine what image was brought to Jeremy's mind in that dream.

Brayden is one long, lean little guy.

Easy in, Easy Out...not so much

Yesterday morning, we realized Brayden's G-J tube was cracked. His G-J tube is the only way he gets food/fluids. Having a crack in it is not good. We immediately called the doctor. They got him in with the Pediatric Radiologist that works with the G-I doctors.

Brayden's G-J tube has been changed out many, many times. We know the routine. Brayden on the table. Large wire into the tube. Deflate the water balloon that holds the tube in. Old tube slides out with wire as the guide. New tube slides on with the wire as the guide. Water balloon is filled. Tube fixed in place. Done.

This time....as they were pulling out the old tube, the realized the new tube was not the correct length. It was almost 6 inches shorter and that is a big difference. Brayden laid on the table, with a big hole in his stomach, for a bit, while they got the proper tube.

The new tube was put in to place but was having some difficulties, then more difficulties, then more difficulties. His intestine did not want the tube. Once it started to go in, it would shoot back out. And I mean shoot out. The tube would come shooting out of Brayden's stomach on to the table. Or it would coil up into his stomach. Not good.

A 5 minute procedure (if that) was probably 75 minutes and that is only when I started watching the clock.

The radiologist worked and worked to get it to stay in place. He was actually starting to sweat! Several times, he said he did not know what to do and may need to stop. Yikes! I was concerned that Brayden was going to be admitted to the hospital. Things were not going well.

I just prayed over and over, Please get it in, please get it in, please get it in. I do not want him to be in the hospital again.

Finally after a very, very slow placement of the tube, his intestine and stomach were fine and the tube stayed in place. Brayden laid on the table for a bit more for the doctor to watch the tube and make sure it would stay. It did and we were sent home.

That was the most stressful tube change we have ever had.

Amazingly the tube being shoved in and out of Brayden's stomach only upset him a little bit and actually slept the last half hour of it. I, on the other hand, was a bit more upset than him.

All in School

Today it happened.

For the first time ever, all of my boys were in school. Carter in 1st grade, Luke in preschool, Brayden in special ed preschool.

I was alone. All by myself for a few hours.

What to do?

I went out for a coffee. A pumpkin spice latte from Starbucks was calling my name.

I had no one calling my name. No, Mommy? Or MOMMY!

No school calling me to get Brayden, huge relief.

Just me, a coffee (oh and a slice of pumpkin bread, I love anything pumpkin) and silence.

I missed my boys.

I tried not to go but...

So I tried not to go to Brayden's school today but that did not happen.

After being at school for just over one hour, I received a phone call. Brayden was having too many seizures for their liking.

Choice: I could come pick him up immediately. Or they would give him medication and call for an ambulance. Hmmm. I rushed to the school no need for an ambulance.

I arrived at the school to find that they just started their first fire drill for the year. I waited (with Luke) out by the flag pole with other school staff. Brayden was some where on the other side of the school. Finally the fire drill was over and everyone was filing back in to the school. I headed to Brayden's classroom to find him in yet another seizure and looking completely wiped out.

Just this morning I sent a note in to the teacher with a chart requesting her to document his seizures and vomiting so that we were better informed and could keep Brayden's doctors informed. She handed me the chart...he had 10+ seizures and one vomit since being at school. He arrived at 7:50 a.m. and it was now 9:40. I would say that is a lot of seizures in a short amount of time!

I brought Brayden home and gave him some medication. He is sleeping heavily and will hopefully wake up refreshed and back to his baseline.

Shake it off

Brayden's seizures have been really bad the past several days. He usually has 2-3 seizures a day that last about 10-30 seconds. He has been having 7+ seizures a day that are lasting way too long for my liking.

I feel absolutely, positively, HELPLESS when he has a seizure. Nothing I can do to make it go away, snap out of it, shake it off or comfort him. He is completely lost in his seizure.

Several times this week, I have broke into a sweat over one of his seizures. They look worse and are lasting longer, not to mentioned happening more times in a day.

Not sure why...could he be sick, tired, growing? I do not know.

Back to the neurologist...oh those visits are always fun.

Second day of school

Brayden attends school on Mon, Tues and Thursday so today was he second day of school. He did much better on the bus today. Although when I was telling him the bus was coming, especially when he would hear the bus and they started loading him, he had this look on his face like he was perturbed about the bus. His brows were furrowed and his bottom lip out a bit, with a look of concern about this whole bus thing.

He did not cry on the bus and when he arrived at school, he slept for the first hour. They woke him with a song and noise makers during the class circle time. Today he worked on sitting in a new chair (not sure what the chair is yet, I did not see it) and he did some work with switches. He did start to cry on the bus during the drive home, once him came inside the house he stopped. Then toke a long nap.

Yes, I did go to the school again today. I promise I will not go everyday, even though I want to.

Yes, it is was still hard to see he ride away in the bus.

It is hard for me to adjust to this. My thought is that is has to be overwhelming for him. He cannot see so he relies on his other senses. Do you think the smell of a bus is comforting? Or the sound of strangers, the bus driver and aid? Then going to school, still a new place with new noises (and probably smells). Asking him to trust these complete strangers. Who knows how he processes all of this.

I know he will get the hang of it soon, as will I.

Brayden's 1st day of school

*Warning this post is filled with lots of photos!

I cannot believe today finally arrived. After all of the emotions, planning, paperwork, meetings, etc. Brayden started school today. He is in Special Ed Preschool at a local elementary school. He attends Mon, Tues, Thurs from 7:50 a.m.-11:50 a.m.

I did not sleep much in anticipation of today. I checked through all of his gear several times, his personalized backpack.

Jeremy stayed home this morning and fixed a big breakfast. Then we headed outside (in the dark since the bus comes at 6:58 a.m.) for pictures.

The bus came to the bottom of the driveway and we loaded him in. I gulped down the sobs welling up inside of me just long enough to talk to the bus driver. Brayden is the only child on this bus in the morning. As we watched the bus drive away, Jeremy and I let the sobs flow. It was really hard to see him drive away (he has only ridden with one other person, once). Here it was, our reality, the special bus going to special ed with our special little guy. Jeremy and I held each other, sobbed some more and then got Carter ready for his first day of 1st grade.

Luke (who starts preschool next week) and I headed to Brayden's school. I needed to show them how to use his G-J tube and feeding pump. When I arrived they told me that he screamed the entire bus ride and for a while after arriving at school, they called the nurse who came and ended up hooking up his feeding pump (from my printed instructions that I put step by step with photo for each step of how to use...obsessive I know). He calmed down. I did not stay too long because it seemed as though when he heard my voice he started fussing again.

I headed home and waited for him to come home.

When the bus arrived, he was sound asleep and on the bus with his friend Justice. I think his first day of school wiped him out. He had the best nap he has had in a long while today.

911 to church

Sunday morning is usually hectic for those families heading into church and attempting to be on time. Running around making sure everyone is clean and feed always seems to be more of a task on Sunday mornings.

Brayden takes us a while to get ready. A half an hour on the suction machine, getting and giving medicines, bath, getting him dressed and making sure we have the proper gear packed for him, all adds up to a serious amount of time.

We all load in the car and headed to church this morning. Brayden seemed uncomfortable for most of the ride. He seemed to be squirming. We thought it was the sun bothering his sensitive eyes and he wanted to sleep. When we arrived at church, Jeremy pulled him out of the car and Brayden did not change positions; left arm and leg curled up, shaking them up and down. He was having a seizure. We assumed it would pass but it was not. I then administered his Diastat, a rectal dose of anti-seizure medication. Of course he pooped right after giving it, some was absorbed but not much. And he was still seizing.

Trying to assess what our next step should be we decided on a call for an ambulance. I called 911, Brayden seemed to come out but then quickly went back into the seizure. I asked the 911 dispatcher to have them not use the sirens in hopes that it would not draw to much attention to the situation or disrupt the church service. Apparently, they have to use the sirens.

So the firetruck and ambulance came blazing in to the church parking lot. Brayden was loaded, seemed to come out of the seizure but then went back in. The closest hospital was only 5 minutes away and a small local one that Brayden has not been to.

Brayden seized for the ride and when getting him situated in the ER. Shortly after arriving though he broke out of the seizure.

The seizure lasted for about 45-60 minutes, his usually last 10-30 seconds.

The ER staff seemed a bit nervous and we were too since they needed blood work and an IV. Brayden veins are shot from being in and out of the hospital the past few weeks. After a couple of sticks, they go the blood work and IV. They gave him a dose ativan (something similar). Brayden was doing fine. The doctor ran some blood work, chest x-ray, talked to Brayden's neurologist on call and everything was fine.

Brayden was sent home. Right now he is just tired from a long seizure and the heavy medications. Thankfully those prolonged seizures do not cause he much harm and he quickly recovers.

Our Sunday was much more hectic than just rushing to church, Brayden was rushed to the hospital. Oh boy.

Seriously, an ambulance to the church?! Really?!

School Open House

It was time for Brayden's school open house. His school is a local elementary school (not the one Carter attends) that has classrooms for special education preschool. We visited the classroom. The teacher and two teaching aids spent time with Brayden, holding him, talking with him and finding items in the classroom that he might be interested in. Brayden did really well and even showed off a bit.

On Tuesday morning, a bus will arrive at our home at 6:58 a.m. for Brayden. There was a mix up on the bus so for now he will have his own personal bus in the morning, he will be the only child on that bus. School starts at 7:50 and ends at 11:50. It will be a long day for Brayden but sure that he will quickly adjust.

Carter and Luke came along. The teacher and aids were great with them asking them to help pick out things in the classroom that Brayden would like.

Brayden has his little tote tray and other things ready for him in the classroom. I cannot believe school time is here, my hands are sweaty just typing this! He will be a big boy on September 8, his first day of school!

Of course me trying to prepare him for school dropped off several things with the school nurse (still unsure about his G-J tube feeding and his vomiting at school). And we put together pictures and notes about Brayden for the teacher and aids to understand him a bit more.

We are ready (or at least trying to be)!

A day at the park

I have been promising Carter and Luke that we would go to this park all summer. With everything going on we have not had much time. Since Brayden had a good day yesterday, I called up some neighbors and asked them to join us at the amazing Clemyontri Park, a handicap accessible park with ramps and swings that Brayden can use. It also has a carousel in the middle of the park that we can roll wheelchairs right on.

It was a beautiful day with great friends.

Brayden even granted us with some smiles. I had a chance to run in to someone from church and meet her adorable boys (HI!).

For more pics check out the family blog.

Brayden is doing better and we are working on the suction machine. Of course I had help today with Brayden's respite care worker!

The big orange machine

Today we waited around for the suction machine to arrive. The delivery tech came to the front door with a large bag.

I said, "Wow, I cannot believe the machine fits in that bag."

He said, "Oh no, it's not in here. I could not bring it to the front door, it would be easier to bring it through the garage."

I opened the garage door and gasped. It is huge. I am not sure what I expecting but this thing is huge and extremely heavy. We are used to his feeding pump and now we have this machine. I think it needs a name.

Brayden is home and details

The most important detail is that Brayden is home. We finally pulled in the driveway at 7:00 p.m.

The medical details...
Brayden did have an endoscopy this morning. Thankfully he did much better with the anesthesia than he did a couple of days ago. The endoscopy did show a few things: a very small spot that looks like gastritis, lots of little red lines that are signs distress and several spots that look like bruising (I do not remember the technical name). The picture on the side is of the little bruises in Brayden's stomach. The lining of the stomach should be pretty smooth and a flesh color. It is possible that one of these bruises came to the surface and was the reason for the bloody vomits. One of the amazing things about how God created our body is that is can take pretty good care of itself; the stomach can quickly rejuvenate and heal. That is the hope for Brayden's stomach.

Since it seems as though Brayden's stomach does not work much, if at all, we are continuing to suction his stomach every four hours for a half an hour and we will continue that at home. The big equipment will be arriving tomorrow and we will have a crash course in how to use it properly. The doctors always leave you with those ominous warnings about using equipment improperly and causing damage so I will be meticulously handling the gastric suctioning until we get the hang of it. We may also be adding a couple more medications but not yet.

Prayer details...
Please pray that some how this gastric suctioning will provide some relief from the vomiting. Pray for Brayden's stomach to heal completely without further complications. And praise that he is home!

How are we doing?

I have to be honest this has been probably one of the hardest hospital visits for Brayden. He has been miserable for a couple of days, although today he is acting more like himself and even granting us with some nice smiles. Since he rarely screams in pain we have very little clue as to how to console him. At moments it felt like the harder we tried, the harder he cried.

Yesterday afternoon the GI specialist came in to talk about Brayden. The doctors are still searching for a solid explanation of the vomiting. I was trying to explain to the doctor our concerns beyond just the medical and how this effects his quality of life. I could feel the tears welling up inside as I told him that we have learned to be content with a lot of things regarding Brayden, a lot of things that are hard but we have accepted them. However the vomiting is not something we are accepting, it is just too much. Just as my tears were about to come pouring out, I saw two little boys peak in the room, my Carter and Luke with their big smiles arrived to visit Brayden and it made me smile.

Brayden did have a great day today, he was much happier. His stomach is being suctioned every four hours for a half an hour. He did start his formula and still on a little bit of IV fluids. He did vomit twice today. The plan is for him to have an endoscopy tomorrow which he will be sedated for and it that looks okay then Brayden could be discharged late tomorrow afternoon.

A praises along the way:

• Brayden was full of smiles, kicks and happy noises so whatever was causing him such pain the past couple of days seems to be gone.
• Brayden has started his formula and has been on it for about 24 hours.
• Brayden and daddy slept well last night at the hospital
• We have had some wonderful nurses (which can make or break any hospital visit)
• The GI specialists that Brayden just started to see (we have been at Children's prior) are great and we really like their ability to assess and make plans
• Wonderful visitors came by
• Carter and Luke seem to be having fun no matter where they are and we have had some great help with them

Some prayer

• Still for the vomiting to go away completely or for some clear answers
• For the endoscopy tomorrow and anesthesia
• For us to come home!

One final thought from Charles Spurgeon, We have a great need for Christ and we have a great Christ for our needs. AMEN.

Another day at the hospital

Brayden was doing a little better today. He was able to sleep but when awake was uncomfortable fussing, crying or screaming...just not himself yet. But holding his daddy's hand seems to help.

The GI specialist came and spoke with us about the MRI of Brayden's abdomen. It all looked good, which means that there are no organs in danger or signs of a chronic problem.

Starting last night Brayden's stomach (remember he is feed in to his intestine) is being suctioned through his G-tube port, the tube that goes into his stomach, of his G-J tube. It is being suctioned every four hours for half an hour. The GI doctor is coming to the conclusion that Brayden's stomach has no motility, meaning it moves nothing on down into the intestine, his stomach does not work. All of the stomach bile and saliva that is collected in his stomach has to go somewhere and he vomits. They are trying the stomach suction to see what kind of effect it may have on the vomiting.

The good thing is that we know the remainder of the path small intestine, large intestine and on out, seem to be working just fine since Brayden's bowel movements have never been a problem. The problem is with the stomach.

Brayden is scheduled for an endoscopy on Monday morning just to check his stomach. In the meantime Brayden is being started on his formula through his J-tube (intestine) to see how things go and they will continue to suction his stomach every four hours, which we may be doing at home.

Carter and Luke came for a visit today. A little snack in the cafeteria, time in the playroom, they always have fun. Jeremy has befriended the little lady in the cafeteria, who always provides him with a laugh. From having back to back visits to this hospital we are now starting to know the staff around us.

A long, long day

This is one tired boy.

His day started at 3:00 a.m. with him screaming in pain. It is now around 8:00 p.m. and he is still screaming in pain.

Brayden is a seriously tough guy. He rarely screams in pain despite all that he is put through on a regular basis. He may fuss and cry but screaming like this...I can count on one hand how many times he has screamed like this. Just two weeks ago while at the hospital, he handled everything with only a fuss when it was IV time.

We have no idea what is causing his pain. And now we are discussing/arguing with the doctor about giving him something more than just Tylenol. Thankfully the nurses are helping our cause.

Besides all of that, Brayden had an MRI today. Actually two MRIs, the brain and the abdomen. The brain MRI was about one hour and the abdomen about another hour. Thankfully they were able to get them done at the same time, total of 2.5 hours to include anesthesia. We have talked with neurologist here at the hospital (I have no idea who he is) about Brayden's medical history and the vomiting. He was able to review the MRI and did not see anything that would be directly causing the vomiting from the brain. We will be getting a copy and send it on to Brayden's neurologist at Children's for her review as well.

The MRI of the abdomen has not been reviewed with us yet. Guessing they will be by tomorrow morning with some information about it.

Brayden's pancreatic levels are still high. Brayden was still having some seizures and still freaking out the doctors/nurses and that is how we got the neurologist to speak directly with us. Thankfully the seizures have been under control for most of the day. Brayden had a little breathing difficulty after the anesthesia from the MRI and was put on oxygen for a bit but then recovered just fine.

And now we wait for something, not sure what that something is but hopefully it is something. We do know that he will be here until at least Monday.

This is one tired daddy.

Back so soon?

Brayden is back in the hospital. He vomited blood this morning..a lot of blood. And that is a fast pass to the hospital. Brayden is back after only two weeks of being home since the last stay.

He just saw his GI specialist yesterday afternoon, things were going okay. Then when I walked in his room this morning...it looked like a crime scene. Bloody vomit covered his bed and him. About an hour after that, he vomited blood again (it is brownish blood not bright red).

Brayden is at Inova Fairfax. All that was done today was blood work and an IV. Of course that was a painful process. He is not a good stick and today was no exception. They tried hands, arms and feet. After one and half hours, maybe two, Brayden had his IV and blood work ready to go.

On top of that Brayden's seizures were bad today. Again it freaked out the nurses and doctors on the floor and they wanted him to be on oxygen and they put this strange protective padding around him in the crib, apparently protocol at this hospital for bad seizures. Thankfully after a few seizures they saw that he recovers fine and only has a moment of high heart rate and low pulse-ox but they made sure the oxygen is ready to go just in case.

As of this evening Brayden's blood work is showing signs of high pancreatic levels (lipase), not as high as last time. This time it was 2x what it should be. When we left the hospital about two weeks ago it was 4x what it should be and then at the blood work last week from the pediatrician was completely normal. Brayden could have pancreatitis still or yet again, I have no idea. He may be scheduled tomorrow for an endoscopy, MRI, x-ray, ultrasound...all of those have been mentioned but no game plan yet. It would not be all of those test probably just one or two.

Please pray for our little guy. This is just too much.

A little graduation

Brayden finished his time with the Early Intervention Program. He has graduated and is on to school!

His occupational and vision therapist have been a very big part of Brayden's life. The OT has been with him since he was 3 months old and vision since he was about 5-6 months old. They were the first people that Brayden trusted. He was not comfortable in his own skin let alone trust someone else but he trusted them to hold him, move him and play with him.

The first few months of Brayden's life we had an ever-growing list of things he couldn't, wouldn't, shouldn't do...a list that was overwhelming (and still is on some days). When his OT and Vision ladies came in to our lives that changed. They helped us think about what we wanted Brayden to do, set and reach goals. They taught us ways to play with him, opportunities to help him learn and ways for him to be part of our daily life.

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They helped us with bath time, car seats, sitting at the dinner table, playing with his brothers, wheelchairs, toys (Five Below) and much more. They helped us see things in a new way...a box of beans is an excellent toy/therapy; a pink pencil bag is still one of Brayden's favorite things.

They will always have a special place in Brayden's heart (and mine).

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Brayden starts school September 8th!

The busy fair

It was a cool and extremely humid Saturday and we headed to a local fair. The rain that covered the area was sure to be a muddy mess at the fair. We did not want to take Brayden's KidKart on such an off-roading adventure for fear it may never recover so Brayden was in the double jogger stroller. I have held onto our double jogger from when Carter and Luke were little; we lived in a neighborhood with sidewalks, lots of little parks and a neighborhood pool. I would load Carter and Luke into the stroller and off we would go.

Brayden was in the jogger for the fair. He was in one seat and his food bag was in the other, both strapped down. He did alright in the jogger. He managed to dose off and when awake he seemed like he was trying assess his situation...what he was sitting in, what were all the noises, where we were...

One of the best thing about being a mom is seeing my boys have fun, absolutely filled with excitement and joy. Carter and Luke enjoy fairs (we hit up a lot of them). They run for the pony rides, petting animals, rides, cotton candy, snow cones...all just a blast for them.

Of course we drag Brayden along for most of these adventures without much of a clue if he likes it or not. We do think he enjoys to be outside.

I had a deep breath moment yesterday at the fair, watching a mom fuss over her children (in a "I love, love, love my children and everyone else should too" way). Her two little toddlers were all over the animals, so excited to be amongst the little goats. One of the children I would guess was Brayden's age, two years old. I actually felt myself get irritated with this mom, I know...not really mature but I have those moments.

It made me think of what the age of 2 really entails. Lots of exploring, getting into things, playing, busy, busy, busy; which makes for a busy mom. I have a busy toddler but in a completely different way...a way that I pray was better for him and our family. I felt like this mom at the fair had no idea what real busy was. I stood there and thought about how much I longed for Brayden to be in there with the animals right along side her children being a busy two year old, being excited for the fair.

Seeing Brayden in the jogger stroller, made me think about when Carter and Luke were toddlers sitting in that jogger. I had no idea how busy my life was going to be. I felt busy enough with two little boys. Then we had our third boy. We adjust.

The results are in

The blood work results came back today. All is looking good. Brayden's pancreatic levels (lipase) are well within normal range. The pancreatitis is no more!

The doctors are still unsure about what caused the pancreatitis and if it could be an ongoing problem. At least for now it is doing good!

Brayden's vomiting is still around and today in full force at 6 times by the afternoon.

That still leaves us with questions...What is causing the vomiting? Is there an answer?

We will see the GI specialist next week to discuss.

Blood work

Brayden had a visit with the pediatrican today. Blood work was done and we should get results tomorrow. Brayden is doing pretty well. Vomiting still happening 3-4 times a day. Curious to see how his pancreatic levels (lipase) are doing.

Carter and Luke are the ones sick. Yesterday, Carter vomited on the side of the road, in the kitchen, bathroom floor and made it once to the toliet. Luke made it to the bucket beside his bed. Today they are both feeling better but I am sick of the vomit!

Oh, our house is non-stop action.

Behind the scenes of our hospital visit

Brayden is not an only child. He has two wonderful big brothers who are 6 and 4.

We do our best to not have them upset by the ever changing events surrounding Brayden's medical care. This summer has been busy for the big brothers, lots of camps and they have really enjoyed it. Carter, the oldest, was signed up for football camp but Luke was too young by 1/2 a year. The coaches for the camp saw Luke's enthusiasm for football and offered for him to join the camp too (Luke was so excited he smiled the entire week). Little did I know what a gift that would be, for the Tuesday of that week was when Brayden entered the hospital. What a wonderful blessing to have Carter and Luke in the football camp having a great time. Since we had no idea when Brayden was coming home we frantically tried every day to arrange help with them after camp. Carter and Luke were with some one different almost every afternoon but they got the royal treatment from pool time to yummy snacks (that mommy would never allow so they enjoyed it even more). Jeremy and I would talk to them every afternoon to check on them and they always seemed to be having a blast.

I would handle the day time at the hospital while Jeremy was off to appointments for work or just running home (we were an hour from the hospital) for a shower and to check on the dog. Everyone was back and forth some where.

Since Carter and Luke were staying with other people, Jeremy did the long night shifts with Brayden at the hospital, I was home alone for a few nights. Arriving home some nights way after my bedtime, I was walking into a dark, quiet, empty house. I was not scared, mostly lonely and desperately wanting everyone home. One afternoon last week there was an attempted break-in in our neighborhood. If you are not familiar with Waterford...well stuff like that just doesn't happen. I am by no means an alarmist, still felt safe coming home at night by myself.

Then come Friday morning, 4:45 a.m. It is dark outside, when you live out this far there are no street lights. The door chime went off, a chime that beeps twice when a door or window is opened in the house. I sat straight up in bed. Did I really hear the door chime? Then the house alarm went off and the dog was barking like a mad woman. I grabbed the phone and called 911. I was shaking so bad that I could barely push the numbers. I spoke with the dispatcher and was having problems hearing her over the alarm but explained to her I was home alone and wanted someone to come out. Then the alarm stopped and started up again. Then stopped again. I attempted to read the alarm panel to see what was happening and I realized that I did not have my glasses on...reading was not going to happen. But I realized, I did not set the alarm...I do not even remember how to set the alarm. I was still freaked out by the door chime and the dog barking like crazy. I sat and waited for the police to arrive. When they arrived they searched inside and out and nothing was found.

I think that it was a problem with the alarm system since I did not set the alarm. I was definitely not going back to sleep so I headed in to the hospital.

The chaos behind the scenes.

Brayden is home and the news

Good news: Brayden is home. We are all under one roof and it is wonderful.
Not so good news: Brayden's pancreatic levels were extremely high this morning, higher than any other day. They sent us home because he was no longer on IV fluids, keeping his vomiting to a manageable amount and his has been taking his feeds. Anything they were doing at the hospital, we could do at home. Brayden has a new medication and new type of bag to attach to his food bag.

Good news: All other things look good except the pancreas, which rules out any major dangers (like the liver, kidneys and such).
Not so good news: The doctors are still not sure what is causing the pancreatitis. After consulting with the neurologist, it is possible the pancreatitis is caused by one of Brayden's seizure medications.

Good news: Seizure medications can be switched and there are several options.
Not so good news: Transitioning seizure medications is sometimes a difficult process and can cause more seizures until Brayden's body is acclimated to the new medication which can take weeks.

Good news: The doctors are looking for some possible answers.
Not so good news: Brayden will see his pediatrician, GI doctor and neurologist this week and next to discuss the pancreatitis and chronic vomiting. Blood work will be done to check Brayden's pancreatic levels. If they do not come down significantly then he may be scheduled for an endoscopy and/or MRI, both tests he is sedated, which we do not enjoy.

Good news: Brayden is seems to be feeling better and is happy to be home.
Not so good news: We still do not have answers to the pancreatitis or the chronic vomiting. It may be a long couple of weeks.

The best news: We love Brayden. We know he is completely in the Lord's hands, the entire situation is the Lord's sovereign plan. We may not understand (much of anything) but we rest in knowing He knows.


Home with a inside picnic and movie. It is the best to look into the family room and have all my boys (and a girl dog) together.

Another Day

Brayden is doing better. His pancreas levels are still high, better than yesterday but extremely high. Thus a CT scan was done. The CT of his pancreas came back mostly normal, which is good because it is probably not chronic pancreatitis. Still no explain about why he has pancreatitis.

A neurologist, who works with Brayden's neurologist, came to consult with the GI doctor. They are looking into the pancreatitis being caused by one of Brayden's seizure medications. They are not really sure but there is not much else to explain it.

Brayden will be staying yet another night at the INOVA Fairfax, with Jeremy sleeping beside him in that oh so comfortable fold out chair. Then in the morning Brayden will be checked again for his pancreatic levels.

He has been such a trooper this week. He is such a hard stick and getting blood work or an IV started on him is hard and then keeping it is always a problem. His little chubby arms and feet have been poked and poked. He is still vomiting, not as often so that it better.

Brayden continues to be in a pretty good mood. Smiling a lot today.

Fun at the Hospital?

We thought Brayden would be coming home today.

That did not happen.

He was started on his formula via J-tube (into the intestine) this morning. Shortly after that, the vomiting came back in full force. Blood work was done and the pancreatic levels were up. When we arrived at the hospital was 813, then later down to 650 and today it was 1023. The normal range is 32-219. So the GI doctor would like for Brayden to stay and be watched. Still no idea what is causing the pancreatitis. The pancreatitis is assumed to be some of the cause of the severe vomiting (not all the vomiting but could be a contributor). The doctor ordered something called a Farrell Valve, an enteral gastric pressure relief system, to help relive pressure on Brayden's gut. It is basically an empty bag that is connected to Brayden J-tube. While he is being feed, the food goes in from his feed bag and air comes out through the Farrell bag. We have to wait and see what effect it could have. We also may be revisiting some medications that Brayden has tried in the past but this time in larger doses. Brayden has still been vomiting all day. His pancreatic level should be checked again tomorrow and decisions will be made from that point.

We still have many questions about the pancreatitis and what it means.

As many of you have experienced, the hospital is all about waiting. Thankfully the playroom and court yard are not too far from the room so Carter and Luke had some good playtime, riding bikes, tossing the ball around, painting pictures and more. Brayden has enjoyed getting out of the room, going for a ride and being outside. Jeremy caught a nap on a bench.

Acute Pancreatitis it is...or is it Chronic?

Brayden's pancreatic levels are coming down. The GI doctor is treating him for acute pancreatitis. Brayden vomited blood in the wee hours of the morning and a few times, just stomach bile and saliva, throughout the day.

Brayden's gut has rested and seems to be doing better. He was quite happy most of the day and excited to have some visitors (Great Grandma, Great Grandpa, Aunt Janine, Aunt Heather and Youth Pastor Shull from our church). He was "talking", smiling and pleased to have people around. We even had a couple of opportunities to unhook all the monitors and stuff, for a ride around the floor in his wheel chair, a look at the playroom and a chance to sit outside in the children's courtyard.

Doing all of that to pass time until the doctor came in.

The GI doctor at Fairfax did speak with Brayden's GI doctor at Children's. They reviewed Brayden's lab work and tests from his stays at Children's and the pancreas was never tested. I don't think because of negligence on the doctor's part, it just never came up, he never had history of things that would bother the pancreas and other indicators of such a problem were not apparent (other than vomiting).

That is why a fresh pair of eyes helps. These doctors at Fairfax, that we have never met, thought to look at the pancreatic levels (amongst many other tests).

We have no idea if this was a problem in the past and the only way to know if it is a chronic problem is that each time these extreme vomiting episodes come up in the future then his pancreas will be looked at.

The plan for now, is to continue the IV fluids, start Brayden on Pedialyte via his J-tube, then a bit of Pedialyte and formula, to formula. If everything goes smoothly then home is the next step.

It looks like the pancreatitis, at least the acute version is being taken care of...the chronic version is yet to be determined and still a BIG question mark for the vomiting.

I cannot forget the mention that we have the best neighbors...we love the Olivers. They treated Carter and Luke to an afternoon at a pool, lunch, snacks, dinner, lots of lovin' and fun.