Update: James had a good weekend. I skipped his chamber dives this weekend and started back up today. Tonight he tolerated one straight hour in his stander which was the longest length of time so far. The goal is one hour twice a day. He will only stay in his stander if someone is hugging him. So we have to kneel down and hug him the entire time. To say he has become spoiled is an understatement!! I know the stander is important so whatever we have to do to make it work, we will! Orally, James has been doing great! Im way more comfortable feeding him orally myself and make sure he gets at least three oral feelings a day. The addition of Guardian Therapy (the Biber method) has been huge. They have also gone above and beyond and continue to train Michelle to make sure shes comfortable using the device. It seems to be the week of the upsee for many kids on Facebook this week with Tripp trying his and Chase Lykken using one too... I hope to add James to the list as we wait for his to get delivered. (Im starting to get nervous about my online ordering skills - that skyler will argue Ive perfected) We are still weaning him off of his spasticity medication and so far he is tolerating it well. He has about a week left and then we wont make any changes until he has a follow up with his neurologist. Im nervous that the next wean is Valium and it will be the toughest as James has built up a tolerance and likely an addiction. Every time we have modified his Valium he has a set back.Tomorrow is his crazy Tuesday therapy schedule so I hope its a good one. From day one I said I dont want to be a pusher of what we did wrong. A face of near-drownings. I dont want to re-live this accident anymore than we already have to. But there is something that keeps coming up and I cannot let it go. Ive mentioned the Handtevy Pediatric Box before. Its something that prior to this accident, I never would have cared about, never looked into, never second guessed the current system. After James accident, Im thankful that the city of Coral Springs was one of the few who demanded this system be put into use immediately. James was the first child it was used on in our city and it made a difference! After doing my own research about this system, I contacted them and ask what I could do... This needs more attention. Every child should be given the chance James had. I dont know what more I can do at this point but just share, share , share! I feel like because I know of this system, I have a duty to other parents. DEMAND IT! Look into it! Today, I had the pleasure of meeting Dr. Antevy and his wife. It was amazing to meet such a humble couple whose knowledge and dedication made resuscitation quicker for James when every second counted!!
Posted on: Tue, 20 Jan 2015 03:44:20 +0000
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