Wednesday, December 17, 2008

Monday's Appointment at Children's

Monday morning we had an MRI scheduled at Children's Hospital. We have been waiting on this for just over 6 months. It was originally scheduled for November 26th, but Karter was too sick to go and we had to postpone it. Karter was sedated for the scan and was in and out within about 35 minutes.

After the MRI, we had a neurology appointment. We ended up getting in an hour early (which was amazing). We met with Dr.Conoly, whom we have not seen since June. She was thrilled with the strength that Karter had gained since the last time she saw him. She was happy to see that he was tracking and concentrating much better than in the past. She commented on how well he was doing, the babbling, the smiles, how healthy he appeared etc. All good things for me to hear.

One huge answer to prayer was that his head had grown. This was the first time in almost 18 months that there has been any growth. This was something I had been really praying for,something I asked the Lord to show me as an encouragement to my spirit and my faith (call it a fleece, call it a sign or whatever you want to.)So thank you Lord!

Technology is an amazing thing. Dr. Conoly was able to pull up the MRI that Karter had an hour earlier right on the computer screen in the room where we sat. She showed it to me and walked me through it. What an amazing thing to see. She will review the scan further and we will talk in depth about it next week, however what she did say was two fold. First off, she comment on how small the resection (brain surgery) was that they had originally done back in May of 2007. She did say that the abnormality does clearly appear to extend further back behind the original resection. So at this point, we are going to re-look at further surgery. Karter has not responded like the had hoped with the first surgery. We had know that there was a possibility that we may need to go back at a later time and revisit the idea. It appears that we are going to go down that road again. They really want to try and get his seizures under control and obsolete is at all possible.

Next Monday we will stay in hospital for 24 hours to do a prolonged EEG (overnight). That will tell us if there is seizure activity happening in his sleep or at other times in the day. We will meet with Dr.Conoly that day as well as with the dietitian to get some ideas on how we can help Karter gain weight - something they are a bit concerned with.

After the neurology appointment, we met with Dr. Matsuba, an opthamologist. Although I did understand what he said, I am struggling with the words to reiterate it back to you. The long and short of that appointment was that Karter does have a visual impairment. Not one that needs glasses, but rather one that is caused by his brain abnormalities.

Part of it is that he cannot see 3D (so if he was to watch a 3D IMAX movie, he would not be able to see the images that pop out of the screen). In everyday life, this could possibly play out in depth perception - things like climbing stairs etc. But is easily overcome. IN addition to this, on the left side he does not respond as quickly to stimuli. So if I hold up an object on the right side, he will look immediately. If I hold up the same object on the left side, it is not an automatic reaction for him to look, it takes more time for the brain to process that stimuli, thus taking a longer time to focus on the object. The good news about this, is that we can improve and change the impairment over the next few years. Vision is not established until you are 6-8 years of age. The doctor felt that Karter was already well on his way to correcting this and he gave us some ideas on how to work on this daily.

It was a busy day, full of information and lots of things to think about. We feel very positive about the day but do also covet your prayers as we embark on another part of this journey and gear up to make some decisions on behalf of our sons well being.

Wednesday, December 3, 2008

A BIG Boy Bed

We had decided last week, that it was time to move from the crib to a bed. There were a few nights that I came in and Karter's long legs were peeking through the sides of the crib. There were other nights when I would come in and he was either completely sideways, with his legs and feet up the side of the crib or he had scooted to the bottom of the crib and him legs were up the end of the crib. It was looking like the crib was getting to small. So Sunday we made the move.

Karter was thrilled with his new sleeping arrangements. We had a spare twin mattress and so we used that. Both our kids cribs turn into a double bed (head board and foot board) however, at this time, we could not afford to purchase the double mattress (after Christmas maybe). He will be getting bedding for Christmas (although I am still looking for that). We put the bed rail up, just as we did with Paige when she transitioned. There were no problems - this was an easy sell for Karter. Every time we ask him if he is in a big boy bed, he just grins and laughs. I think he likes it!

I left the crib up, just in case the bed did not work, but this weekend that will be disassembled as well.

I took some pictures of him during his first nap in the bed, just before he went to sleep.

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