Hope for Max

4th of July

Well, I hope everyone had a wonderful 4th of July.  I feel like we at the High house took the holiday by storm.  My parents came to visit for the weekend and we made the most of all the traditions.  O.k. except the fireworks, but really the thought of dealing with crowds, late nights, and traffic all for a 15 minute show is nauseating and thank goodness, because Max hit his wall at exactly 9pm.  He told us he wanted to go home!  So here is a rundown of our 4th.  Thank goodness for Papa Dorman or we wouldn't have all the pictures for posterity.

Max started his day off with a little train conducting.  Ms. Gina helped too.  Gotta love the hat (Thank you Nana High!).

As some of you may know his newest love is fire trucks, and our local fire station had an open house on the 4th.  It was a great time and you could even ride the truck with lights and siren going, but Max was happiest just looking at the trucks and examining every inch.

We went home and set up some sprinklers to pull Max's wagon through.  I can tell you about half an hour of work went into this endeavor on Aaron's part and after about 15 minutes Max was done.  Ah, what you do for your little ones.  Max was tired so he and Nana laid down for a nap.

(I'm gonna get in SO MUCH TROUBLE for this picture, but that is the deal when you hang around Max and Papa with the camera.  We should start having photo releases signed.)

After a rejuvenating nap Max headed to the pool for some lounging and guy time with Daddy and Jonathan.

We finished the day up with a BBQ at Jonathan and Kristen's were we feasted on burgers and homemade ice-cream.  We did play with sparklers, so at least we participated in some fire hazards on the 4th and Max loved it.  Below is a pic of Max with Kristen and Daddy doing sparklers.

Well, that was our holiday in a nutshell.  I think Max had a great day and it wasn't so bad for the rest of us.  Other than that all is going well.  The power chair should be ordered this week and we are on the hunt for a mobility van, which is a whole other post entirely.  Needless to say I will be posting on that soon.

Pics are up!

O.k. I was able to load the pictures today from our trip.  The pics of Max playing games is a carnival that the conference holds for the kids on Friday night.  All of the games are geared for their abilities.  I always wish we could take more pictures.  We always forget about the camera.  Anyway, enjoy the photos!

YEA!

I just wanted to post that we received word from our case manager at Tricare that Max's power chair is APPROVED!  I cannot express the happiness at the High household right now.  Thank you thank you for all the prayers and threats of bodily harm to those involved.  We greatly appreciate it.  This is the most major hurdle of insurance.  They continue to be very cooperative with Max's medical needs, but the quality of life equipment is always a hard sale.  This has lifted a huge weight off mine and Aaron's minds.

Also, I will hopefully post the pics from the trip on Friday.

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. 

CPT Vest

Just when you thought (well, we did at least) that there couldn't possibly be another piece of medical equipment in Max's room...here comes the CPT vest.  This vest is a automatic version of the manual CPTs we have been doing for the last year.  It is way more effective.  When we do manual CPTs we can only focus on one area at a time.  This has been a problem because Max's mucus plugs (in his lungs) would just go to another area.  We were moving them around instead of getting them up.  Mucus plugs are what blocks off his lungs and cause collapse.  This vest inflates and provides various levels of vibration to bring the mucus plugs up and keep his lungs clear.  These are very popular in the Cystic Fibrosis community.  Max quite possibly has the most expensive wardrobe in town with the addition of this vest.  We received the invoice and it costs approximately $15,000.  Tricare may not be on my top ten, but so far they seem to be paying for this one.  See the picture of Max rockin' his new vest below.

Aaron and I really thought Max would flip out when this thing got going.  He is on it for two 30 minute sessions a day, but it doesn't see to bother him.  He just gets bored towards the end of each session.  Aaron and I think it's awesome because we get to interact with him instead of having to "work" on him.

Max continues to improve.  He is now super into Thomas thanks to Ms. Liz providing many Thomas DVDs for the hospital.  Of course, any good Thomas fan needs the train and Nana Dorman was ready to oblige.  She purchased one small set, but that would not do for Max.  Aaron went out that same evening and needless to say our whole living room is now the Island of Sodor.  Here is a pic of Max with his new train.

DENIED!

Well, we figured it was inevitable, but we were holding out hope.  Tricare denied Max's power chair.  Aaron and I are in the process of filing a reconsideration, but that is pretty much a joke.  The reconsideration is a letter we write refuting the points which they denied the chair, but it is reviewed by the same physician who denied the original submission.  After that we go to a 3rd party mediation appeal, which is where we hope to make the most progress. 

Tricare denied the chair because "they" say that since Max relies on his parents for all his daily living activities.  Duh...he's 2!  Also, he wouldn't rely on us if he had the power chair...don't you love circular logic.  "They" also claim that due to his ventilator support needs he would be unable to operate the chair.  He only uses his bi-pap while sleeping and as responsible parents we would not let him operate the chair while sleeping...THAT WOULD BE DANGEROUS!  In addition, I have seen numerous children operate a chair while on a ventilator or bi-pap (and awake).  Lastly, they claimed that there is no proof our home could handle a power chair...our 2,000 sq. ft. one story home...yep, probably to small.

This is what insurance does. They hope we won't appeal, most people don't.  They hope we will give up, most people do.  Aaron and I refuse to accept that for Max.  Max deserves a good quality of life like any other child and we intend to get that for him.  We have a couple of avenues with Medicaid waiver, but the frustrating part is that it delays Max's chair another 6 months by the time the paperwork clears. 

Everyday that Max waits for a chair is another day he loses in development.  Max doesn't understand his position in space.  When a child first begins to move they learn how to function with the space around them.  Max hasn't been able to learn that yet.  As I said before I could go on for pages explaining why a power chair is vital for his development, but I just don't have time.  Imagine having to wait for someone to figure out where you want to go or never being able to "run" to your mommy and daddy when you want to.  I see the look Max has when he sees kids playing in the neighborhood.  He cried to go over and join them, but a kid in a manual stroller cannot keep up with a bunch of kids.  2-3 year olds do not want to hang out with a child who can't go anywhere.  As a parent watching your child long to be social, but unable to is heartbreaking.  It seems so unfair that Tricare gets to make that decision for us.  You cannot deny a child the right to a more normal life, because it is too expensive.  Max did not ask for SMA.  It found him.  We are merely trying to provide the best possible for him in his circumstances.

Power chair prayers needed!

I wanted to let everyone know that Max continues to do FANTASTIC!  He is blowing his therapists away.  Next week we plan to begin the therapies out of the home (e.g aqua therapy...yea!).  Our new night nurse is doing well and even managed on her own last night, which meant Aaron and I got our first full nights sleep in over 2 weeks (yea!). 

Now for the serious part...Max's power chair is currently in physician review with Tricare.  We are praying that it gets approved, as the appeals process can be long and drawn out and we would like Max in his chair as soon as possible.  I could go into a long explanation about how power chairs are vital for appropriate development for the physically handicapped, but I won't because you would like to finish this post before tomorrow.  It would literally be his legs and children learn so much from exploration.  Please, please pray for a positive outcome.  This chair costs roughly $25,000 and our mobility van will run about $60,000.  Needless to say the chair being paid for by insurance is important for us to be able to afford the van to transport it.  This chair will open up a whole new world for Max.  Aaron and I have witnessed the difference with other children who already have a power chair.  We want Max to have the same opportunity.

Now for the funny part... our case manager cited one possible reason for denying the chair is the parental controls on the back so that Aaron and I can operate the chair.  Basically, they think it means that we will be moving the chair, not Max.  O.k., I'm gonna do something crazy here and be a little logical.  How many parents of able-bodied children allow their children to run wild in all locations and under all circumstances (e.g  church, airport terminal, the road).  How in the heck am I supposed to stop a 300 pound chair from going into the road?  Of course there will be times it is necessary for Aaron and I to control the chair!  We cannot control the chair the same way Max does as the controls are very sensitive and designed specifically for Max.  With our touch we could actually break the controls.  So next time you are with your child or grandchild try just telling them to stop without ever physically intervening and let me know how that works out for you...especially if they are a two-year-old.  Obviously, Tricare's kids are much better disciplined than mine.  Shame on me for my poor parenting skills.

O.k. enough venting...I will let you enjoy the rest of your day and I am going downstairs to enjoy Max's smiles!

River Dog game for MDA

On Saturday, May 9th the RIver Dogs have joined with The Sunshine House (local pre-k) to hit a HOMERUN for MDA.  The pre-k classes will be "hopping" on the RIver Dogs field before the game and making a check presentation to MDA between innings.  You can go to your local Sunshine House (they are all over Charleston) to purchase pre-sale tickets.  For every ticket purchased from the Sunshine House $3 will go to benefit MDA.  To find your nearest Sunshine House contact Micky Stylinger at (843)871-0822. 

Aaron and I hope to have Max at the game.  This is a great opportunity to have some fun for a good cause.

When:  Saturday, May 9th

Game Time:  7:00pm

Where: Joe Riley Stadium

What a beautiful day!

I am beginning to enjoy the fact that there is very little to report.  Max is keeping his oxygen up very well.  He is now on the Bi-Pap for night-time and nap-time.  We are still keeping his schedule pretty low-key.  Today we got crazy and ventured out in the yard for a little while.  Max is keeping busy with his cars, playing ball with Mommy and Daddy, and laughing at his new Jack-in-the-box (Thank you Audon! Max LOVES it!). 

We are also trying to wean ourselves from the pulse/oxymeter that keeps track of Max's oxygen levels.  You really begin to become obsessed with the machine to the point you quit looking at Max.  We can tell if and when he is struggling by the way he looks.  It's time we start relying on our own instincts.  Max is still wearing it most of the time (right now we are a bit rogue and letting him have it off for a little while).  After tomorrow we will have one week with no "de-sats."  That is a big milestone for us.