Wednesday, May 27, 2009
But, we decided to allow the activities of the weekend to serve as a good distraction to what was happening in our heads, and then yesterday we headed back to neurological surgery. Our original appointment with NS in April showed that the suture that runs from the bridge of Nolan's nose to the middle of the top of his head is fused. We were told that the only way they would repair this would be if optho found that his brain was putting pressure on the back of his eyes (optho did not see pressure on the back of his eyes). Instead of seeing the nurse practitioner this time, we saw the actual surgeon. After checking his weight, height and the size of his head, she informed us that repairing the suture would greatly benefit Nolan. Because of the info from the previous appointment, I asked why the change in diagnosis. She explained that when we originally came in, they had Nolan "pegged." Typically a child with a smaller head (Nolan's head is on the smaller end of normal for his age), who is experiencing developmental difficulties, has a small head for a reason... that reason being that the brain isn't growing. They were expecting to tell us that there would be no need for surgery b/c his brain isn't growing. A CT scan that day showed a very healthy brain with no6 atrophy (a finding that surprised the doctors) (thank you Jesus!). On top of that, since our last appointment, he's grown, as well as his head, plus he's making progress in therapy. Repairing that suture would not only allow his brain to continue to grow, it will also help correct the shape of his head (b/c that suture is fused, his head is shaped like a triangle), and it could possibly help with some of his eye issues. We aren't guaranteed anything, but it seems that this all makes sense. The head shape, developmental delay, and eye issues could very well be attributed to the fact that this front suture is fused and his head is growing funny. We are desperately praying for this to be true...
Now...onto considering the surgery... oh boy... I won't explain the surgery, as Brandon and I are still trying to wrap our heads around it. It's incredibly major, our NS works along with a plastic surgeon (who we have a consult with July 6th), to repair this suture, it's a 6-8 hour surgery (makes his wee-wee surgery in December seem like nothing), with a 3-5 day hospital stay. She was very comforting letting know she would never leave Nolan's side, and was very encouraging with us as she truly believes that the benefits greatly outweigh the risks. She said she feels as though Nolan would do nothing but benefit from the surgery. Please God let this be the answer...
We now wait for the NS and the PS to coordinate their schedules for a surgery date...which they thought would be September at the earliest. In the mean time, we continue with therapy, loving on him (which is sooo easy to do), and we pray. Brandon and I will be also relieved and encouraged if the blood work from Friday comes back negative. If it comes back negative, we have all the more reason to believe that the fused suture is the catalyst for Nolan's problems. Please God let this be the answer...
Because we have time, we will also be looking into getting a second opinion...
Could I ask for specific prayer requests?
1. Nolan is worth every penny we have, but, the cost of this surgery will be "nuts" (the term our surgeon used). I plan on researching assistance soon, would you pray we could find a supplement to our current insurance?
2. The girls...childcare for them while Brandon and I are away. That they can handle Brandon, Nolan and I being away for a few days. They won't have anyone to take care of with Nolan gone;)
3. I really want this surgery to be the answer to Nolan's problems. If it isn't, would you pray we can find out the answer?
4. SAFETY!!!!!!!!!!!!! Pray for Nolan's safety during surgery...pray for wisdom the doctors.
Thursday, May 14, 2009
Monday, May 11, 2009
Tuesday, May 5, 2009
Philippians 4:6 "In every thing by prayer and supplication with thanksgiving let your requests be made known unto God."
Sunday, May 3, 2009
Saturday, May 2, 2009
Somehow, Nolan worked his arm completely out of his sleeper.
Every night Brandon and I go in and watch Nolan sleep. We talk about how precious he is and how much we love him. That's also the time where we talk about how much improvement he's made and what a joy he is to have around.
Joyce was one of the therapists who also came when Nolan was 5 months old to do his initial evaluation. She couldn't believe how much he had changed and grown. Her initial comment was, (in a squealy voice) "Well look at you big boy!" She made sure to let me know that if we had any other concerns to let her know, but that he looked good. Boy did I need that after the optho appointment on Thursday.
Friday, May 1, 2009
So, again, I find myself discouraged. On the todo list this weekend is getting a 10 month old baby some glasses. Man...