Wednesday, April 14, 2010

Many blessings

The last month has gone by so fast! Things slowed down for a week or so, but now they are revved back up again – such is the life in MPS, we’re beginning to understand.


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.

Gear. We were so excited to launch our Hunter Syndrome awareness campaign in the form of Case’s website, the T-shirts, bracelets, etc. If you haven’t gotten your gear yet, you can now purchase it online through paypal (www.savingcase.com/gear.html)!

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.

Wednesday, March 17, 2010

Welcome to SavingCase

After a number of very busy weeks, we've capped it off with the launching of Case's website - SavingCase.com. We hope to bring awareness to rare diseases in general and Hunter Syndrome and MPS/ML in particular, as well as provide a central point for fundraising, events, Case's latest news, and the new gear we've developed.

I feel like a jack of all trades lately - learning just enough to be dangerous about IEPs and special education, website development, TennCare and SSI, T-shirt design, etc. However, without the involvement of many talented people, my knowledge would just be "dangerous" as opposed to just enough of anything! I want to take this time in the inaugural post to send a multitude of thanks to those who are involved in all of these efforts, as well as the efforts to check in on us, show Case and the other boys special attention, pray for us, and just give general support. Without your help and prayers, it would be difficult to sustain what has become a marathon effort.

If you are new to our widening circle of Team Case, please feel free to catch up on all of his background and our roller coaster of a year at Case's caringbridge site -http://www.caringbridge.org/visit/casehogan. I haven't decided yet whether to continue updating his caringbridge along with this site or some combination. Time will tell.

The latest news consists of lots of things accomplished for Case! His IEP was completed after three long meetings with the local school. His placement involves remaining at his current school at least until the end of the summer! We are so pleased with the progress Case has made at High Hopes that it would have been so difficult to change directions at such a critical time in the cognitive stage of his disease, especially considering some of the cognitive issues we are seeing. Case will hopefully continue learning, including some alternative communication methods such as an ACD. Since kids with MPS (Case included) generally love technology, we are hoping this will be a rousing success!

I've been thankful for the challenge of learning about special education law and IEPs and I'm hoping that I can use this knowledge and my experience as a lawyer to help other families in this process. Thanks to all our friends who helped us in this effort of creating a good plan for Case.

Case and our other boys have also been approved for TennCare as secondary insurance! This is a huge answer to prayer given our very high deductible and certain things not being covered under our plan. The approval has literally just occurred, so we have yet to see how this will truly impact our situation, but we are hopeful it will be a great thing. It doesn't affect the current medical bills (which is how they qualified - in Tennessee, it is called the Medicaid spend-down option), but going forward, it may be helpful for equipment and therapies.

Along with the website, we are extremely excited to have completed the design for SavingCase t-shirts. We hope we've created a powerful shirt for awareness that will stir people to ask questions about MPS.

We're completing the packets for our first official fundraiser - running and walking the Country Music Marathon and we're excited for the event. We have several participants, but are still looking for more runners/walkers as well as "vicarious runners" who will get sponsors but get to avoid the arduous task of running that 13.1 or 26.2 miles! We're so pleased to get events set up that we can hopefully do each year, raising more funds for research as we go as well.

We're looking forward to hearing from more new friends now that Case's website is up and the article about Hunter Syndrome is appearing in the local paper. Case is such a joy to us and all around him that we look forward to telling his story and all the ways that God is using him to change our lives for the better.