Hope for Max

Did I mention ear infections stink????

Ok. Max definitely has an ear infection.  We went and saw the Nurse Prac. in Pulmonary today and his right ear is still red.  The poor little guy feels like crap, but thankfully the big 3 worries have not materialized.  When Max is sick are indicators for major problems are his oxygen saturation, his ability to process his feeds, and fever.  We are being very proactive with his CPT vest and suctioning.  Typically, when Max has a lot of mucus we pull some out of his belly.  Most kids might throw it up, but Max can't do that.  However, we have not pulled any out of his belly, so the yuckies aren't going down his throat (and therefore less chance of them sneaking their way into his lungs).  Also, many kids with neuromuscular diseases experience "gastric dysmotility" when they are sick.  I assume as a way to conserve energy their body quits processing food normally.  Many kids don't want to eat when they are sick, but they also have significant resources (extra fat) to pull from and Max doesn't have that.  Max can't afford even a day without normal feedings without feeling the effects for long afterwards.  Now the fever is obvious for all parents and it is no different for us.  His body is trying to fight off the infection.

Max's major hurdles now are getting past the nausea and stomach pain from the antibiotic.  His poor tummy turns and turns when he is fed.  We started him on probiotics today (the cultures in yogurt) to help with that.  Please continue to keep Max's health in your prayers.  We are watching him very carefully.

Ear Infections stink!

Well, I have been meaning to write for a while, but it is very easy to forget when Max is doing so well.  He has been loving speech camp, which has inspired us to investigate a morning program for Mr. Max.  Apparently, he is quite the social butterfly.  We are also beginning the IEP process (individualized education plan) for Max and his school.  All children with a disability or special need are eligible for an IEP and it is to help insure that the child gets their "free and appropriate education" as promised by the federal government.  I can talk more about this in a future post.

We have also chosen our modified van after weeks of "discussion" and visiting mobility dealerships and e-mailing with other parents.  I really think this was the hardest decision, because it is so expensive and we are petrified of making the wrong decision.  We decided to go with the Honda Odyssey modified which runs about $58,000.  We were thinking of modifying a Dodge Sprinter, but after realizing that I am only 5'0 tall, so I would need a rope ladder to get in (or I could hop on the lift with Max) and I would probably crash it in the first week with its 170" wheel base we decided a mini-van was the better option (did I mention the Sprinter would have run $70,000).

Now, as I wrote, Max has been doing very well, but woke up Saturday morning with what seemed like a tummy ache.  It was all down hill from there and after lunch we finally realized it was probably an ear infection based on his pain level.  Thankfully, he was able to tell us where he hurt.  He is now on antibiotics and ear drops.  His lungs continue to sound good and he is processing his food well.  These are two major indicators of problems, so that is a blessing.  We are starting him on an inhaled antibiotic tomorrow to prevent any bacteria from growing in his lungs.  Thanks to the oral (or g-tube in Max's case) his sinuses are now draining, so the primary focus is keeping all that yuck out of his lungs.  This is where the CPT vest can really help us out.  After we do the vest Max is spitting globs of green goo.  He is not running a fever anymore, so I am praying we are on the downhill slide.  Please keep Max in your prayers.  We are supposed to be leaving on Sat. for a my cousin's wedding in FL (Max is the ring bearer).  However, he needs to be up to par before any road trip.

I will write more later.

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.