So much hope, yet so much uncertainty at times

I am writing today as I am sitting here in my living room observing Carter. We are listening to Serious XM, the Message.. Carters favorite. I really believe that he knows ALL the songs that they play on this channel..I hear him sing a word, a lyric, or even most of the song at times. Its wonderful. In listening to this I feel such hope, such excitement, such " I knew he was capable!" He looks at me with his lit up eyes and continues to sing and I feel a tear fall down my cheek. I think, "Thank you Lord for the gift of this child, what a blessing he is." Even as I sit here to type out my thoughts so that you can read them, I cry. I love my boys so much and even though there are times where I feel like I dont have any patience or cant take anymore, the truth is I would rather be here at home with them, then anywhere else. To add to the miraculousness of my son (Maybe Im biased, I dont think so), he starts dancing- or bouncing at times while singing. Its the greatest. Who knew he would have such a melody in his heart. My thoughts go back to when I was pregnant and found out that my son might not walk, talk, or do much of anything..Wow, if those doctors could see Carter now...God gave Cody and I two gifts (so far): Carter and Camden. I really have no idea what I would do without my boys, I love them more than words can say.
On to the topic of his new medicine, Neurontin..It has been already causing dizziness for him. They told me the side effects could be dizziness & sleepiness. So far I have picked up on the dizziness. Once his body gets used to the medicine, it should get better. I pray that this medicine helps Carter and that it has no lasting side effects. Could you please pray the same? I want my Carter back, the Carter that was more steady just three months ago. The Carter that didnt get sick when he saw his brother eat or whose eyes didnt roll back (this is the worst)..The Carter that didnt have these 'noises' that he couldnt control. To make it even worse, sometimes after he does the noises and the eye rolling (which are usually hand in hand), he says "funny.", like he has to hide them or make me think hes laughing.
A praise I have is, Carters SLP (speech language pathologist) wants Cody and I to keep track of Carters sentences of 3 words or more..We set a goal in November of 100 by the end of 2010. Carter is already at 40. We are so proud of him and all that he is accomplishing despite all the symptoms that could have set him back. Way to fight Carter!
Also, Carter is practically running at times now too. Its quite scary to see him go that fast. "Slow down!" I always tell him!
Please be in prayer for Carters next ped endocrinology appt (Feb 1st in Sioux Falls). We are thinking now he doesnt have growth hormone deficiency because he has recently grown...but do think he still has an underlying thyroid problem. Please pray that the doctor will get to the bottom of this. He has been on thyroid med, but they took him off...Now his TSH has been borderline.
Thanks again for your prayers!
Gods Love, Jessica :)

Some answers from Omaha.

So yesterday, Cody, Carter, Camden & I left at 6 am to make it to Carters first appointment in Omaha @ 9 am. His appt was with a Dr. Legge, a neuroopthamologist. This glorified eye appt went really well, and Cody and I were quite impressed with Dr. Legge. He is a very intelligent man and was really good with Carter, Carter didnt cry once for him (only when nurse put drops in his eyes!) A praise is that Carters eyes actually improved sight wise, he was last checked @ 5 months old and the doctor said his eye sight improved by 50%! YAY! Still has astigmatism in both eyes, but thats no big deal. There was no sign of cranial pressure and all was well, and he doesnt need to see an eye doctor for another year. This doctor was talking how he would need and like to see Carters last scans of his brain, and I got out our CT pics that we had...Those didnt show him much, and then Cody piped in saying, "Well, we have that cd."..Thank the Lord we had that cd! Dr. Legge looked at the disc of Carters CT scans and found that part of the brain didnt look equal in the middle...He had a special name for this area and I don't remember. He did call this a midline or mid brain disturbance. This area being disturbed can cause all of the symptoms that Carter has been experiencing; nauseasness, vomitting, drooling, dizziness, eye rolling/fluttering, etc. Wow, I can't tell you how grateful I was to have this doctors knowledge. He mentioned that there is some medicine that Carter maybe able to be put on (if the neurologist agrees) that would 'stabilize' his brain. He said that this is hard to treat though, so please pray that Carter can be put on this and that it would help him!
Our next appointment was with Dr. Hellbusch, a neurosurgeon that we have been seeing since Carter was born. Carter first had a CT scan (and did pretty well- normally he really fights!) Dr. Hellbusch looked at the scans and said that the fluid on Carters brain looked pretty much like it did last month and that there was no sign of his shunt malfunctioning. We told the Dr. what we learned from Dr. Legge and how he thinks Carter should be put on a brain stabilizer. This doctor agreed and was going to send info on to Dr. Pavcovik, the neurologist. Putting Carter on this medicine is ultimately up to Dr. Pavcovik, whom Carter just saw last month when he was experiencing the same symptoms. We are hoping that Dr. Pavcovik doesnt need to see Carter again, but can just prescribe this medicine for Carter. If he has to see Carter again, it could be as much as 2 months out (Which I would argue!) I am not gonna sit here any longer watching my son have all these awful symptoms.
So, by 12:30 we were done with all Carters appointments. We then went to Younkers and spent too much time there, but Carter was walking so well! He was going everywhere! Cody followed him and said that women were "ooo-ing and aww-ing" him..and Cody would tell people that Carter was taking him for a walk. :) After Cody and Carter went up and down the escalator 6 times, we took off for Sioux City. My mothers ring had gotten repaired and was ready to be picked up. We looked at some more carpet samples from Mozaks, which was great, and then went and ate and were on our way home. It was nearly 9 by the time we got home, we all crashed! What a long day. We were so happy that we are getting some where though. If there is a medicine that can treat and help Carter, I am all for it. My boy needs some relief. I am gonna call the neurologist Tuesday if I dont hear from them on Monday.
Thank you everyone for your prayers. God is good and if treatment is as simple as medicine right now, thats great with me. Anything is better than having to put Carter back into the hospital and/or having surgery.

What exactly is going on...?

Carter's appointment is less than 2 days away, thank the Lord...I don't want to take him, but know we need to take him. We dont know what exactly is going on...wish we did. All we know is things are not right with Carter..His symptoms have gotten progressively worse the last few weeks...I cant even count the number of times he does his 'noises' lately and on top of that he has been experiencing: nauseasness, vomiting at the sight of spit up, camden eating, drool, etc. (which he never did before his last surgery).., dizziness (falling more frequently than before surgery), and the list goes on. I can't wait to give this child some relief of some kind and hope and pray we get answers on friday.
Although he has periods of "normalness", he has much eye fluttering and rolling..to the point of bringing me to tears..I told Cody that we will not be coming home from Omaha without answers..something needs to be done to help ouc Carter. Whether it be simply adjusting his shunt (which they would keep him for a period of 6 hrs, or overnight), or another surgery (because perhaps the catheter that they put in is too long; it is the longest one hes had so far)...we WILL get answers.
I hope and pray Dr. Hellbusch takes us seriously and listens to us..last visit he was so quick to call Carters irritation seizures, which they are not...Pray for an open mind for the neurosurgeon and also for wisdom.
I will update after we know more following friday.