Friday, August 28, 2009

More News....

Well this has been a big week for Karter! I have been trying all day to get time to post this.

I got a call a few hours ago from Variety Children's Charities. Her words were "I have news for you. Some of it is good and some might not be what you expected". She proceeded to tell me that VCC does not provide money towards Child Care expenses(Karter's one-to-one support worker would be considered an expense). However, they do provide bursaries for school.

Because of the importance that preschool provides for Karter's development, they have agreed to give Sunbeam Preschool a bursary on Karter's behalf that can be put towards those fees for support. We had asked for $3636 and they have provided $2500 for him.

She said that all the work I did to contact the MLA and community resources and in process, kept her in the loop on all of those emails and phone calls, she realized how important it was for Karter to go. In addition to their feelings about the importance, the fact that we did take the initiative to seek out that funding anyway we could, weighed heavily in out favor.

So Praise The Lord, Karter is going to preschool! Although we will still need to find some additional funding for the remainder of the year, Karter will start in September and we will not need to concern ourselves with it again until well into the New Year.

Thanks for your prayers, God has not yet let us down. He is SO good!!!

Thursday, August 27, 2009

It is Official...

Karter will be going in for a second surgery. I just got the call a few minutes ago. It looks like it will be sometime in November or December (we will know the exact date in a few weeks).

A few things to mention:

-Karter's SPECT scan was co-registered to his MRI and when the surgeon looked at it he said that it was clear that the seizures are coming from the right front lobe, where the first resection and all the EEG's in the past have pointed to. It appears that it does not go back into his motor cortex.

-This surgery will be the exact same as the first one, they will further resect the right front lobe. Because it is not in the motor cortex, Karter will not lose any motor/physical function on the left side, nor will he lose any peripheral vision in the left eye PTL!!!

I am feeling a bit overwhelmed. My first emotion is that of relief and happiness. We have waited so long, almost a full year, for an answer. Now that we have it, it just feel a little surreal. When Kelly (the nurse clinician) told me, tears welled up. I am not sure if they were tears of joy and relief or if they were tears of "OK here we go again". At any rate, we have prayed that the Lord would pave the way for Karter. And it has been our feeling all along that we wanted to proceed with a second surgery. So here we go - "I will thank you Lord for guiding our path, You are faithful!"

I will keep you posted when we hear the date and details. Please keep Karter in your prayers. Our biggest challenge will be keeping him healthy over the next months so that his lungs remain clear and that his body remains well. (an obvious struggle with Paige going to school and Karter going to preschool).

Thursday, August 20, 2009

A Special Project

I had a great discussion with a special friend this week. She mentioned how she was praying for Karter that morning. That lead us into a conversation about healing, faith and various other things. One of the topics we talked about was spoken words. Long story short, our conversation sparked an idea in me for a special project.

I went and bought a number of canvas' from the dollar store. Paige and I made it a project one night to paint them all. I then wrote healing scriptures on them. On the larger canvas, I wrote the word that was spoken over Karter. The plan is to hang the art collage over his bed and claim those words over him when he wakes from sleep and when he goes to bed.

I thought that you might want to check it out.

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Trip To The Dentist

Here are a few pictures of Karter's visit to the dentist the other week. He did really well. He laid in the chair all on his own, had a full cleaning and polish. His check up was good; no decay. A good report!!!!

Saturday, August 8, 2009

Karter's Fund

We have been asked by a number of people to set up a fund in Karter's name for donations specifically for his treatment, equipment and other needs as he grows and develops. Our goal is that in spite of Karter's additional needs, he will have the appropriate care and proper equipment to make life as easy as possible and to give him the same opportunities that Paige and other children have at his age. After a bit of research into the options, we have taken the necessary steps to completing this.

I would like to preface this by letting you know that we are in no way soliciting your donations. We just wanted to make available to those who have asked, the option that would best suit them. Karter has been blessed in abundance this past few years and his needs, by the grace of God, are taken care because of the generosity of many.

The account is set up at CIBC Bank. It is in Karter's name. If you hold an account with CIBC, you can make an online transfer from your account to his. If you do not hold an account with CIBC, you can go into any of the 1000's of branches across Canada and give them his account information and make the deposit there. We have been told that listing the deposit information here is secure and we have taken all the proper security measures to ensure that the account will not be compromised.

You will need this account number when you go in, they will not let you deposit with just his name. It is 00720/66-52999.

Some of you have asked specifically what Karter's needs are right now. I have listed below the need and the amount. Again, please know our heart in this and know that we are not vying for your money. God has placed on the hearts of many to help bless Karter and take care of his specific needs. Those needs will be provided for, that is a promise that we stand on and have experienced over the past years. Bless you all!

Needs for now: Updated for 2011

Wheelchair accessible van ($60,000)

Wednesday, August 5, 2009

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!