Sunday, January 27, 2008

I am fearfully and wonderfully made - Brayden's Dedication

Our church, Reston Bible, has an opportunity for us to dedicate our children back to the Lord. We had the privilege of doing that for all three of our boys when they were infants. This time it was Brayden's turn. Jeremy and I shared a testimony during the dedication. Below is what we shared.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
"Praise You In This Storm" by Casting Crowns.

In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. That day was filled with joy and excitement. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it didn’t make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of these test were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.

The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life. We do know that he is and will be developmentally delayed. He is nine months now and still working towards holding up his head. Brayden struggles with seizures and we try to regulate them with medication. He is visually impaired and is struggling with eating orally and may need a G tube for feeding. He was just fitted for his first wheelchair/stroller that will help him get around. Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, feeding therapist, vision therapist.

Two big things we are learning: control and community.
Jeremy and I are both first born, type A personalities and we like to have things under control. When I was pregnant with Brayden, I remember loading the boys in the car one morning and running a bit late. Everyone was buckled in. I had the book bags, lunches, and the gear to get through the day. I sighed and thought to myself “ok, I have this under control”. After Brayden was born, my sighs and thoughts are “ok Lord, you are in control.” We have no control over what Brayden’s capabilities will be. We can do all the things we can to help him but no control with what the outcome will be for him.

Community has played a big part in the past nine months. The moment we found out about Brayden’s brain, prayer went out across the globe. We try to send out emails updating his progress. These emails have been forwarded around the world. We have heard from complete strangers, old friends, new friends, grade school teachers, missionaries, other families that have children with disabilities and countless others. All have offered to help in some way, whether it was a meal, watching the two older boys during doctor’s visit, or prayer. The Moms Connection at RBC has provided meals and check in with us to see if there is any way for them to help. Neighbors have taken our boys to their house when we have had to go the ER for Brayden’s prolonged seizures. A family at RBC, has a child with a brain tumor, continually emails, calls and sends care packages to help lift our sprits. They check to see if we will be at Children’s Hospital simultaneously so we can get together and pray. A college friend’s five year old daughter sent pictures that she drew of Brayden and little notes for the older two boys. The morning of the MRI, we woke to find a voice mail from a friend in Chicago. It was a long prayer for us and Brayden to get through the MRI and the big day. Every time we walk into church someone is embracing us in a big hug and asking if there is anything they can do to help. Our community is continually supporting us.

The dedication is important to us and we applied this verse, which has taken on a whole new meaning.
Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
When Brayden was in the womb, only the Lord knew what was to come. All of the prenatal tests and doctors did not reveal anything. No matter how Brayden progresses, he has been wonderfully made. We know the Lord has a plan for him and our family.

Brayden is 9 months, Jan 2008 email

Brayden is nine months old! This has been a long nine months but some days it seems like it is going by so fast. This month had been full of checkups and appointments.

We met with the neurologist. He is still having seizures so the medication was increased. He went about nine days without any seizures and yesterday he had several which is a rough day for him.

Brayden is struggling a lot with eating. He has only been able to nurse. Thankfully that has been going well. Although, there is concern that he has been aspirating small amounts and we have been instructed to schedule a swallow study for him. Since he is only nursing, we still feed about every 3-4 hours. We have started feeding therapy every week for a period of time. He does not like for there to be anything touching his face, let alone in his mouth. So first we are working on the face before there will be attempts to put things in his mouth. A physical therapist met with us during the feeding therapy. It seems as though Brayden is so overwhelmed with trying to control his body that feeding it just too much for him. Since he is able to nurse, we will continue to do that until he needs more nutrition and calories than I can offer. At that point he will be getting a G-tube for feeding.

Brayden currently has occupational therapy once a week. He is still working on stretching out his tight muscles in his lower back and shoulders. Holding his head up is still a task but he really tries. He also has vision therapy once a month. The vision therapist is great at finding opportunities for us to provide a visually stimulating environment for him without it being to overwhelming. It seems as though Brayden is starting to look at things for a longer period of time (3 seconds or so). In the next couple of weeks he will be assessed for physical therapy and that will then become part of his weekly appointments.

This past Monday, Brayden was fitted for his first Kid Cart, the fancy stroller/wheelchair. He should be getting it in a couple of months. We also ordered a bath chair. Since he is slowly getting bigger, it is harder to bath him without him sitting up so the bath chair will help.

Today was the pediatrician visit for the nine month check up. Brayden’s head has grown less than 1/8 inch, we would like for it to grow more. He is grown about ½ inch. He has not gained weight from a couple of months ago (hard for me to believe) and we even tried different scales at the doctor. He will be checked again in a couple of weeks. We are not quite sure why he has not grown much. It could be because of medications, feeding or just something with the way is brain is functioning right now.

Brayden continues to love his daddy. Jeremy can calm him down better than anyone. Bradyen is starting to get comfortable with his therapists and seems to realize who they are and he recognizing me for food.

This month has been busy. Carter and Luke do not seem to notice. They have been able to go to family and friend's houses during some of the appointments, otherwise they are in preschool. Luke's favorite place to go is Great-Grandma Jenkins house. There, he is spoiled (as only a great grandmother can do) and plays with his Aunt Janine. Luke always manages to come home with bag of cookies. It is great to know that the boys are being taken care of so that we can concentrate on the doctor visits.
Carter has recently been very good with helping to soothe Brayden. He talks softly in his ear and gently pats his stomach, which Brayden really likes. Luke, on the other hand, is not so gentle although he tries.

The next few weeks we will have the ophthalmologist, swallow study and the rehab doctor, along with he normal weekly therapies.

Please continue to pray for his seizures to be controlled, his eating and vision to improve, and to gain more control over his body. Amazingly Brayden is a very easy baby. All of these appointments and people picking at him do not seem to bother him too much.

Thank you for your continued support and prayers.

Friday, January 18, 2008

Snow much Fun

Snow came down! Carter and Luke could barely wait to play in the snow. Carter took off for the big hill in the front yard with the fastest sled. Luke tried the fastest sled and had fun on the way down until it came to an end with a face plant in the snow. Carter stopped running up and down the hill just to make a few snow angels. Luke was not getting down to make any angels for fear that he could not get up with all of his snow gear on.

Painted for Geese

Jeremy and Carter joined others for a goose hunt over the weekend. Carter is always up for a day outside. He thought it was cool to have his face painted up and hang out with the big boys.