Hope for Max

Finally settled back in after our roadtrip!

Summer is here, so just like most families we had our first summer road trip.  We just got back from attending the Families of SMA conference in Cincinnati, Ohio.  Aaron, Max, Nurse Gina, and I took the two day trip up to Ohio, meeting my parents in Knoxville and then continued on as a group where we met up with Aaron's parents for the conference.  Now for those who have never got to witness the joy of packing for us...well, good for you.  We work with 2 excel spreadsheets and a lot of manual labor!  Loading and loading the van at every hotel was exhausting and I was just watching Aaron!  Thank goodness that all the major moves in and out of downtown Cincinnati we had help from our dads.  I mean it was still a bit stressful, but I call any stressful situation where Aaron and I are still speaking afterwords a success.

Like last year, just when we thought we had it all together we came home with about 5 pages of notes to begin working on in Max's care.  From new positioning techniques for helping with hip dysplasia to tips for how Max could get the best education possible.  I swear, when Max's neurologist, Dr. Turner, told us that learning about your child's disability was like drinking out of a fire hose I had no idea that it was permanent.  Thank God we have a year before another conference.  I think the conference was very beneficial for our parents.  They got to attend sessions that explained Max's care.  We all got to spread out a bit more to hit more topics and they got to meet other grandparents and families.  It is, for the most part an extremely positive experience.  How can you not love seeing all those kids zooming around a hotel in power mobility (although it does make me itch for Max's chair).  Speaking of kids in power mobility, here's a funny story, only because it wasn't my kid.  I preface this with the disclaimer that I think the child care at the conference is great.  They entertain the kids and for the most part it goes off without a hitch, however, these kids are very smart and precocious.  Apparently, one little girl (I would say 5 or 6) got a bit bored and decided she was going to blow this Popsicle stand.  She managed to get from the 3rd floor to the 1st floor by elevator, make her way out of the hotel and down three city blocks to a public park.  Did I mention we are in downtown Cincinnati?  A police officer finds her and returns her to the hotel, thank goodness she knew where she was staying, before anyone realized she was missing.  We sat near this family at the banquet and you could just see her plotting her next escape.  Half-way through the banquet she started to head away from the table and her brother chased after her yelling to his dad, "She's trying to escape again!"  Gotta love these kids!

Here are some snipets of what Max got to experience on this road trip:

In Knoxville, we took Max to a Dream Playground.  It is completely handicap accessible.  Most people don't think much about a child's playground, but for the parents of a child who is wheelchair bound it is a glaring, brightly colored mockery of what your child will never be able to do.  Dream playgrounds are built all over the country to make a play area accessible for all abilities.  You can check them out online, just google dream playgrounds.

Max got to try out a power stander.  Much like a power wheelchair, but you stand instead of sit.  I could drone on about the psychological benefits of standing for normal peer interaction, but let's just say it was really cool for Max.  Once he realized that by pushing the joystick he could propel himself...well, you couldn't have wiped the grin off his face.  He kept saying go, go, go.  I think I can safely say that it made the entire weekend and the drive worth it for all of us.

We took Max to the Cincinnati Zoo with Grandpa and Grandma High.  Really, we could have ridden the tram all day and Max would be happy.  He is all about riding...the faster the better.

Well, now that we are home and settled in things are getting back to normal.  The only bump in the road was a minor swine flu scare.  I can't think of a worse place for a confirmed case of swine flu than a conference for children with immune and respiratory issues, but sure enough on Tuesday we receive an e-mail that there was a confirmed case at the conference.  Anyway, we will be heading to FL in August for a wedding, so looks like we have a couple of weeks to take it easy.  Especially, now that I have updated Max's site!  I will try to get some pics from the trip up in the next couple of days.

Words Galore!

I know, I know, I have been slacking on the blog, but in my defense I have been working on Max's power chair reconsideration and organizing stacks of other paperwork and filling out forms and writing letters regarding Max's diagnosis.  For someone who doesn't have a desk job I spend an unusual amount of time at the desk in our office doing paperwork.  It seems never ending.  Between billing screw-ups, appointments, and denials...you get the picture.

Anyway, we are proud to announce that Max has been talking like crazy over the last 2 weeks (Lord, knows where he gets it from?).  It all started with quite possibly the cutest "o.k." in the history of toddlerhood (no bias...at all).  Now he is saying airplane, big ball, bubbles, all day, apple, kick ball, pool, floor...the list goes on.  He is even copying us when we talk (uh, oh daddy...time to watch it, everyone knows only sweet words come from mommy's lips ;).  His speech therapists are ecstatic to say the least.  This has been a long time coming and we weren't sure it was ever going to get here.  It is such a joy to hear his sweet voice actually tell us what he wants.  He told me yesterday, "I want choo-choo." 

Now on the more serious side, the Medicaid waiver that Max is on is looking at severe cutbacks in the next couple of months.  This would affect a great many families (5,700 in South Carolina).  For us, specifically, it caps the cost of a wheelchair at $8,000 (I may have mentioned Max's will run about $25,000...talk about beating a dead horse).  There are a lot of other cutbacks that will affect families far more profoundly.  In an effort to save money it only makes sense that they would take from the weakest in our society.  I know there must be cutbacks, but the caliber of the "proposed" changes are insane.  Some families will not be able to appropriately care for their child in the home environment and may be forced to place them in a residential facility.  This will cost far more money, which Medicaid is willing to pay.  Another example of cutting off your nose to spite your face.  Max and I are planning on attending the meeting on Thursday night, while I don't know that it will make much difference at least they should have to look at the people their decisions are directly affecting.  Hopefully, other families will be able to attend.  I do know that some are planning to caravan over to Columbia.  The irony is that a lot of these families are unable to attend because of their child's illness/disorder.  Traveling for these families is very difficult given their family members medical needs.  I do feel that it is important for those that can attend to do so.  It is very last minute.  I was given the proposed changes over the weekend from Max's service coordinator, who received them from another parent and the meeting is in 2 days (it's almost like they didn't want us to make it, darn).

Needless, to say, once again our week has gotten a little busy.  I'm not sure how this happens every week.  I will update when I hear anything.