An Impromptu Appointment And An Interesting Letter

Let's start with the appointment news first...

Yesterday, I called the neurology clinic to follow up on the results of Karter's SPECT scan as well as fill them in on the latest seizure activity.

Because Karter's seizures have increased again (most likely due to an imbalance of medication because of his rapid growth) it was agreed that we would come in for an appointment today. Although short notice, it worked well in our weeks schedule. The purpose of the appointment was a regular check up, a discussion around surgery in addition to a medication change.

We arrived at 2:30 for our appointment, we were prepared for the usual 1 hour wait. (Kurt and Paige both came in this time) To our surprise we sat in the wait room for a total of 5 minutes (because we were early) and then met Dr. Connoly and Nurse Kelly in the room at 2:30 on the dot (AMAZING!!!!!!!). At the beginning of every appointment, Karter is weighed and measured. He is now a whopping 32 pounds and 3 feet 2 inches tall (38 inches). That is a weight increase of 10 pounds since mid-January. He is now in the 50th percentile for weight and height - quite a feat for our little guy since he was off the bottom of the charts for weight and height six months ago. In addition to that, his head has grown 2 inches since our last visit. It is still below the normal level however it has picked up significantly in growth. He went just over two years without any head growth, which was of grave concern. All those things in combination, gathered much praise from Dr. Connoly and was so encouraging to us. Thank You God for little miracle all along the way!!!!!!

We will be introducing a new medication over the next 8 weeks. In addition to that, over the course of the next 6 months, will be slowly weaning him off the Nitrazapam that he is currently on - a med we really did not want him on because it contributes to low tone and poor muscle control, not to mention A LOT of drooling! So good news all around!

The medication adjustment is a good thing, however just a band aid fix at this time. That led us to the discussion about a second surgery. Dr. Connoly has viewed Karter's SPECT scans, however they still need to be co-registered against his latest MRI scan. They do this so that they can get a better idea of what is going on in all levels of the brain. In Karter's case, nothing showed up on the SPECT scan that could be seen to the naked eye, however, co-registering it to the MRI could allow them to see something that would help determine a result.

Dr.Connoly feels strongly that surgery is a very good option for Karter. They would further resect the same area in the right frontal lobe. Prior to the last surgery, we were told that if they needed to go back for surgery a second time the area of the resection would go into the motor cortex and there would be some paralysis to the left side (hand and foot) as well as a field loss to the left peripheral vision. However, after viewing the latest MRI, it appears that the resection that was done the first time was very small. There is still a fair bit of abnormality in front of the motor cortex that could be resected and that is the area they would address this time in surgery. So the next step is to present Karter's case to 'Conference' (a bi-weekly meeting of all the neurologists and neurosurgeons). At that time, our surgeon will make the final decision as to whether he will go forward with surgery. The feeling we got today was that it will go ahead some time this fall in October or November. Karter's growth, weight gain and overall health weigh very well in his favor this time.

All in all a great visit today! There was lots of good things said about Karter's development and growth of this past 6 months, which for obvious reasons, was very encouraging for Kurt & I. We will keep you posted with the final decision about surgery.

OK now on to the letter...

Yesterday, there was a letter in the mail addressed to "The Parents of Karter Witt". I opened it and to my surprise it was Karter's preschool package that includes the gradual entry schedule, letter from the teachers and all the paperwork to fill out for class. I sat there for a moment to take it all in.... I remember getting Paige's package two years ago, but the emotions were really different, not the numbing shock I felt at that moment.

I am so excited for Karter to go to preschool and although all the funding details for one-to-one support are still up in the air, (which really determines whether he will go or not) there is a part of me that is secretly a little worried about sending him. I know it is the best thing for him for his social, physical and emotional development, but still there was a tug of war going on inside. Questions whirled around in my head all evening and for a small window of time in the middle of night, after being awaken to rescue Paige's stuffed bunny from being lost beneath the covers at 1:45am :-). Things like "How will the other children treat and react to him?", "What will he do there?", "Is this is right time to send him", "Is he really ready", "How will the parents respond?", the questions go on and on. My reluctance though, soon gave away to prayer for Karter and what is best for him.

My ability to "cut the chord" so to speak is so much more difficult with Karter. I am the one in which he depends on for life - literally! I feed him, I move him around, I change him, I put the things in front of him to entertain him, I cuddle him - he cannot come to me when he is sad. Not that there are not others that can step in and assist in that, I am learning to accept that help slowly. But more than that, I feel like he is my little tag along buddy. There is a sense of feeling like I can protect him from the 'world around him' when I am there, it is an extremely vulnerable place to let him go where I am not.

So there you have it - preschool on the horizon! I am gearing up to bring a box of kleenex on the first day and I risk being the blubbering mother that I often silently grinned about when I too was a preschool teacher! (I suppose you get what you dish out hey!?! :-) )

In other news...I got a discouraging letter from the MLA last week, it was in response to my letter about the lack of preschool funding for Karter's one-to-one support, from a few months back . It basically stated all the facts that I already knew, but no action had been taken to change anything. So I wrote another letter in response asking action to be taken and telling her that I was unsatisfied with her restating facts that I was already living - as if I was unaware of them! So we will see if anything comes of it.

I still have not heard from Variety about whether they will grant funds for a worker for Karter so that he can attend preschool. My confidence rests in the fact that the Lord has taken care of things up until now and I certainly do not believe He will let me down now. He knows what is best for Karter, He will work it out. I have enough other things to put my thoughts into, I do not need to worry about the details of that. So I rest in Him!

Karter's wheelchair will arrive within two weeks. The seating is in and the chair left the manufacturer back East early this week. So we will have it in due time before school starts.

Thanks for your continued support and prayers, God is constantly moving through our little guy. He is an over comer!