Blessings! I have to start with the fact that we feel incredibly blessed to have Case. He is an absolutely wonderful child, as are our two other boys, but the Lord is teaching us so much through this process. I will probably blog somewhere separately about just the amazing insights that Case’s situation is bringing to our lives. Giving thanks in all things, we are thankful for MPS, because that is part of our Case.
Clinical Trial. If you’ve been following for awhile, you know that there is a clinical trial that puts enzyme into the spinal fluid for uptake into the brain to hopefully stop the cognitive regression in our boys. WELL… the results after the first infusion of the first boy showed that GAG had decreased in the spinal fluid by over 45%!!!!!! While no one totally understands the full implications of this, this is wonderful , wonderful initial news. We are praying for strength for those families in the trial, as the whole process and the day-to-day involvement is difficult, exhausting, and emotionally overwhelming. Actual cognitive testing to compare results still hasn’t occurred, but this is at least a fantastic physical sign that this has the potential, the potential, to give our boys a longer and more engaging life.
6 Month Visits. We’ve started the round of 6-month follow-up with all of Case’s specialists. Since he generally sees everyone every 6 months, by the time you get through them all, you only have a little reprieve before you start back up again. But, we’ve really gotten to know and love lots of the other patients and staff at Vandy, so it becomes just another fun-filled day. I will say the van is taking its toll, however…. I think our medical mileage calculation for taxes was over 5,000 miles for 2009! We’ve had ENT and ortho, now on to audiology, cardiology, pulmonology, neurology, genetics, ophthalmology, and neuropsychology (in Denver, hopefully, for a great specialist) over the next 6 weeks or so.
Surgery. So, one of Case’s first 6 month follow-ups is resulting in him needing new ear tubes. The first set have fallen out because they’re already about 18 months old, so now we’re trying to check in with all his docs to see what else we may need to load onto this anesthesia round. Please keep the little man in your prayers as we get this scheduled – his last one landed him in ICU, so we’re not very excited about this and just weren’t expecting it. We’re trying to decide whether to just wait until after all the specialist visits, but then we’re risking another 6 week ear infection like he had recently.
TennCare Appeals. We are still so thankful for the blessing of the boys getting TennCare as secondary insurance. But, the fight is never dull! We have appeals in process to get Case moved to TennCare Select (the plan more used to dealing with children with special health care needs), to compel approval of his pushchair which was denied, and we’re fighting to get his diapers covered since they are special order due to his condition.
School. On the school and learning front, Case is doing very well! After moving onto his IEP goals, Case has been learning his “talker” (assistive technology) and his speech has been improving as well. He is actually sometimes having a conversation with you, where he says something, wants your reply, and wants to say something more! I feel overwhelmed with joy about this – when he was first diagnosed, I expressed my longing to be able to at least communicate with Case, to know him, to know his wants and needs, and now that is happening! He is talking about things he likes and what may have happened at school (not always right, but we’ll take it!). He’s also had an evaluation for music therapy since he responds so much to music. It might be useful to help him reach his goals as well as deal with the medical trauma of hospital and doctor life.
Fundraisers. If you’ve made it this far, thank you! In only 10 days, a group of us will be running the Country Music Half Marathon for Case’s medical trust. With my lack of ongoing training this year, I know only God is keeping me going and will help me finish this race! I’m wearing my Case bracelet now to run and that really keeps my mind on why I’m torturing myself like this! We’re also starting to plan a golf tournament and silent auction probably for September, so if you have any ideas about locations or have items to donate, please let us know! My Dad is also coordinating a golf day in Cincinnati in August at Grand Oak Gold Club that will donate $5 from each player for that day to Case’s trust. We are truly blessed to have friends and family supporting us with outstretched arms, not only with fundraisers, but with notes of encouragement, meals, shoulders to lean on.
CASE. If you haven’t seen the sweet video made by Nicole, our loving friend and longtime babysitter, please watch it at www.savingcase.com/media.html. Scroll down to the 3rd video and you can see the joy that creates my fervor in fighting for Case and raising awareness and funds for MPS research. If we don’t fight, those sweet words, that sweet smile, may disappear. Please fight with us.
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