Wednesday, August 5, 2009

Jamesy Update

Well, it is time for another update regarding James. This time around we have four new important items up for business.

1. James is continuing to progress in regard to both his abilities to communicate and especially in his ability to use his legs. In fact, we have ordered him a gate-trainer that will help him to learn how to walk by holding up his upper body allowing him to use his legs without having to support his upper half. This is quite exciting!

2. James has been struggling with C-diff now for over six months. It doesn't seem to be going away. He has a pretty nasty and painful diaper rash, and there is no way of taking the edge off. He literally has no skin on his little butt, which makes changing diapers quite the event.

3. We had a meeting with James' neurologist this past Tuesday and he gave us some more information regarding James' previous EEG test (if you have not already, you can read about this test by clicking here). He said that James has ESES (electrical status epilepticus) syndrome. He said that James' brain is spiking (where all of the neurons in his brain fire off at once) over 75% of the night time. Most kids with ESES do not acquire language skills, because the brain is not able to store the information learned throughout the day (which is one of the purposes of sleep--to retain and store knowledge). He said that some of James' developmental delays are definitely linked to his eses. They are putting James on two other seizure medications to try to stop the brain from forming a permanent pattern of spiking. This is not good news, but with the help of meds it is possible that James' brain would stop this pattern. Apparently, eses has a wide range of effects in kids, some being severe while others are not so severe. Either way, the neurologist was quite alarmed and suggested that we take immediate action (by upping to the meds that he is already taking and adding a few to the list, and by scheduling another EEG in a few weeks). They will not know much about James' specific condition until or unless they can find out what is causing it. The good news here is that the negative EEG reading does give the doctors information to work with--this may help them get to the bottom of many of his developmental issues. One thing to pray about is kidney stones. Many of these seizure medicines have the tendency to create kidney stone problems. James' nutritionist put him on high calorie formula so that we are able get more water into him to help flush the medicines a bit better.

4. Lastly, James took a nasty spill yesterday. He had to go to the hospital. He fell out of his jimmy-rigged adaptive stroller while going up some nasty stone stairs. His tumble form, which he sits in, fell out of his stroller with him strapped in, hit the stairs, and then his face hit the stone steps pretty hard. He had a nasty cut on his chin (they used skin glue to fix it up), the inside of his bottom lip has the equivalent to road rash (which they cannot do anything about), and his two front teeth are about as loose as they can be without falling out. His gums are a nasty dark purple. They took him to the emergency room to get a cat scan just to make sure that he had no head trauma or anything, and the catscan came back perfectly. Praise the Lord! Today we go to the dentist to decide if he needs his front two teeth pulled or not. My guess is that they will keep them in. He will be sore for quite a few days, and he will need constant 24 hour speedy hands to keep him from rubbing and grabbing his face. It was quite the event--he was bleeding profusely from the mouth right after he hit. Our greatest concern was that he would either choke on his blood (because he takes neither water nor food by mouth), or that he would get some sort of head trauma (with everything else that is going on in his brain). His little mouth and chin are quite the site, but he should recover fine. Also, be praying that James does not bite his lip--it is swollen and thus keeping him from biting it is quite a chore.

Anyway, be praying for James' healing in regard to his c-diff, eses syndrome, and his nasty face injuries. He is quite the trooper. He still smiles and has a good time despite the storm raging around him. Also, be praying for Kristal as well. She is such a good mom, and was already overwhelmed about James' neurology visit before he took his spill down the steps. She is quite fried and worn out as you can imagine.

Thanks for your constant prayers. The Lord is in control and has things better than we can imagine in store, Kristal and I are both confident of this fact. You never go wrong when your hope is in the character and word of God.

3 comments:

Jessy said...

How terrifying for a mommy! My stomach turned just imagining how Krystal felt when he fell.
I pray that his new meds will be the key to "unlock" his brain and that they would not cause any side effects!
Love to you all!

Anna said...

Jimmy,

I will be praying for James, Kristal & you. Praying for healing and answers, and anticipating Jesus' return. Looking forward to no more pain and no more tears.

Anna

Jimmy Snowden said...

Anna,

Thank you much. I will be praying for you and your family as well. My mom keeps me updated. Our ultimate hope comes not in perfect earthly circumstances, but in the character of our good and all-sovereign God and His eternal plan (in other words, a resounding 'amen' to your comment, "and anticipating Jesus' return").

Jimmy