Updates...

Well, it's hard to know where to begin and how much information to share...as we are still processing all of it. Brandon and I had a rather interesting Memorial Day weekend, as it was bookended with 2 different specialist appointments for Nolan. We began with the dreaded developmental pediatrician appointment on Friday. I have to first say that we are so very thankful for the doctors down at Riley (and other places as well), as they truly are dedicated to helping families and children. I honestly didn't expect to go in and find any answers. My thought was that they would look at him and then forward us onto another specialist. However, after examining Nolan, and talking through the things our doctor noticed about Nolan, our specialist gave us his "best guesses." I say this because, since Nolan is so "unusual" with his issues, he is not an easy, clear-cut diagnosis (he has some issues, but there is still so much about him that seems "right"). He had 2 specific things he wanted to test for, and after lots of crying and discussing, we headed down to have blood work done to rule out or to prove the "guesses." We'll get those test results back within a week to 2 weeks. We were so discouraged, and even discussed canceling all plans for the weekend to just try and process all the information.

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.

This little devise that Nolan is using is called a Little Dipper. Since Nolan's gag reflex hasn't totally developed, the occupational therapist who was here a few weeks ago, recommended we get him one of these. The green part is a little mesh bag that you can put fresh fruit and/or vegetables in. He can chew on it and get the juice from the fruit, practice self-feeding, as well as work the gag reflex. Today I put watermelon in it, and WOW!, was this little boy happy. The noises of slurping, chewing and moaning were all ones that let me know that he very well may have a new "favorite" food.:)

Here's how Nolan started the day.

The relatively new, squinty faced smile:)

And here's how he ended the day.

Adelynne said, "love you bud," and then leaned in for the kiss:)

Firsts

Nolan's first tooth finally popped though!

Thanks!

Have I mentioned how thankful we are for our friends and family? Well, we are!!! We know so many of you are praying for us. Thank you! We feel them. Also, some of you have sent cards, money, emails, and posted support on this blog. Thanks! All of these things are such and encouragement to us. When I am in a valley of this storm, I go back and read your words of encouragement. Thank you! Thank you!

Philippians 4:6 "In every thing by prayer and supplication with thanksgiving let your requests be made known unto God."

Missing

The zoo called yesterday...they want their cutest monkey back.

Sleeping naked

Ok, so maybe the title isn't totally accurate:) Here's how Brandon found Nolan sleeping last night.

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.

OT Evaluation

An occupational therapist paid us a little visit yesterday to evaluate Nolan. Our primary concern was that he would gag on any type of table food (puffs, stage 3 foods, etc). She had me put a puff in his mouth and we all watched the second that it hit his tongue, he gagged. Then she told me to try putting it up against one of his cheeks, and to our amazement, he worked it around with his tongue, used his front gums to chew and then he swallowed it...no gagging. We all cheered, and he smiled. Joyce (the OT) explained that a baby's gag reflex starts in the middle of the tongue rather than the back of the throat, so that they don't choke...God's little choke prevention method. The more and more they work that gag mechanism, the further back in the mouth the gag reflex it moves. Pretty amazing. By putting the puff in his cheeks, it allows him to be in control of the gag reflex, by the puff not being put directly on the gag reflex. Because he was chewing some, she had us try some banana to see how he'd do with it. He did the same thing, worked it with his tongue chewed it with his gums and down it went. Joyce was so pleased, and saw no reason for Nolan to need OT as well as physical therapy. So, that's a praise.

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.

Opthamologist appointment

Yesterday, I took Nolan back down to Riley to see a pediatric opthamologist. The exam went well, and I was rather encouraged initially because when the doctor came in he had to ask which eye was the "lazy" one. Nolan's tracking was good and for all intents and purposes, he is seeing well. They dilated him and further examined him and found two conditions that Nolan has. #1 Amblyopia, also known as a lazy eye. #2 Accommodative Esotropia, which is a form of far sightedness. Nolan struggles to see things close up, and when he does, his eyes cross. Both conditions, if not corrected, can deteriorate vision. The doc wrote a prescription for glasses for Nolan, in the hopes that the glasses will retrain the eyes to work properly. We go back in 2 months to see if these conditions have improved or corrected. If they have not, they will want to do surgery to fix the nerves in Nolan's eyes. Oh boy! Another possible concern is that Nolan's optic nerves are healthy, but small. This can be nothing or it could end up being something...we'll know this over time.

So, again, I find myself discouraged. On the todo list this weekend is getting a 10 month old baby some glasses. Man...