Sunday, April 27, 2008

Hook Him Up

Brayden is hooked up! April 23rd, Brayden went to Fairfax Hospital for surgery. The surgery was successful and he now has his G-tube. He looked so adorable in his little hospital gown with pants, we had to take a picture. Brayden stayed at the hospital for three days and the nurses made us practice feeding him through the G-tube. We are learning how to hook him up to everything. Right now it is quite a process but once we get the hang of things we should be able to do it with our eyes closed! He is still pretty sore but for the most part he is adjusting pretty well.

While we were at the hospital, the pediatric rheumatologist scheduled some blood work (done during the surgery) and stopped in to see Brayden. After the rheumatologist’s assessment, she found that he does not have Vasogenic edema and that the red hands/feet are probably related to his brain abnormalities; the brain’s difficulty to regulate blood and circulation. We will still see some more doctors to check on some additional possibilities for the red hands/feet.

We are a bit sleep deprived but happy to be home.
Thank you for everyone’s prayers. It went as smoothly as it could go.

Party for Brayden

We celebrated Brayden's first birthday with family and friends. Brayden was loved on by everyone and was wiped out after the party. Jeremy rented a moonbounce for the big kids, who barely stopped jumping just to eat cake. It was a beautiful day!

Brayden is ONE, April 2008 email

Brayden’s 1st Birthday! Watch out this email is a long one (you may want to get a snack or go for a bathroom break); there is so much to say about Brayden!

If Brayden had a mascot it would be the turtle; slow and steady, eventually will get to where ever he is going and keeps a lot hidden in his shell. Our little turtle, Brayden, turned one today! Brayden is slowly developing in his own time. He is doing better with holding up his head. It is still work for him but he is trying. The seizures are doing better and mostly controlled with a couple of medications. His smiles come once in a while so this picture is quiet special. He truly is a sweet little guy. He is getting good at letting us know his likes and dislikes. He always lets his therapists know when he likes the exercise or if he has had enough.

One of the big questions of the year is his condition, handicap, label, etc…
Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.
· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hyplopasia
New ones to add to the list
· To the GI doctor and feeding therapist: feeding difficulties, G-tube
The past 3-4 months Brayden’s growth has really reached a plateau. He is always weighing in around 17 lbs. He may lose a few ounces, gain it back, and stay about the same but no significant growth. He has been going in for feeding therapy once a week and it is slow progress; just like the rest of his development. Brayden has always been successful at nursing but beyond that, nothing has worked really well. He has reached the point where he needs more nutrition. So next week, April 23rd, Brayden will be going to Fairfax Hospital for surgery to get a feeding tube, the G-tube. He will be there for a couple of days to make sure everything is working.
· To the Rheumatologist or Genetic Counseling – Vasogenic Edema or Riley Day Syndrome
Brayden’s hands and feet swell really bad and get very hot. This may also happen on his arms or legs. We are in the process of figuring out what this could mean. Allergies, heart conditions, circulation, among other things have been ruled out. After seeing the neurologist this week she and other neurologists suggested the he be tested to find the cause of this so that he may be treated. This may or may not be related to his apparent brain abnormalities. There are only three pediatric doctors in the area that have expertise in this area; two at NIH and one with INOVA. We are in the process of getting on the waiting list to see them.

Just looking at him, we would have no idea all of that is going on! Brayden has some amazing doctors and therapists that really incorporate all of his special needs. We have been blessed to have these experts that we trust and Brayden is starting to trust.

Are you overwhelmed with information yet? We definitely are and I only give you the watered down version in the emails. We have been overwhelmed with information and emotion this past year. For me, I have retained more information than I ever knew possible and found emotions that I did not even know existed. We are learning to really take things day by day. I am still waiting for all of this to feel “normal” and to get into a routine but Brayden always has more surprises in store.

One year ago today, we had no idea what road was ahead for Brayden and our family. That day we welcomed him with such joy and excitement. The next few days after his birth feel like a preface to a novel that is still be written (only the Lord knows the ending of the story). This is so different from anything I ever imagined for my family. Brayden’s life is changing and shaping our family. I think about what kind of impact this will have on Carter and Luke, they love Brayden so much and want to help in whatever way they can. Carter and Luke love to sing songs to Brayden, thankfully he enjoys it.
Brayden is an amazing gift in more ways than I can express. He is our little turtle; slowly moving ahead and slowly revealing more about himself day by day. We are so thankful for him, this past year and whatever lies ahead.
Thank you for everyone’s support and prayers.

Carrie Jenkins for
Jeremy, Carter, Luke and Brayden

Prayer Requests:
For Brayden’s G-tube surgery to go well on April 23 and for us to be ready for this change.
For the doctors to figure out the swelling and redness in Brayden’s hands and feet.