Sunday, January 27, 2008

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.

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