Hope for Max

Happy Halloween!

Well, it's that time of year again. Time for Aaron to pull out all the stops and create Max's choice of halloween costume. This year was no different...okay it was a little different, because technically none of us dressed up, as opposed to last year when all three of us were a little trio known as the Wonder Pets. Now you're probably thinking, hmmm, how creative can it be if none of you dressed up. Well, if you ask Max "chair" dressed up for Halloween, Max is merely doing the driving. So drumroll please....

This is Aaron's interpretation of an airport fire truck! Max has been discussing this costume for over 2 months. Aaron really puts all his love and creativity into Max's costume. Once again he managed a success story. Some of the lights look like they are not working, that is because they are flashing and there was no way to catch them all at the same time. Aaron made countless trips to Lowes and Walmart and perused many a lighting site online to make this dream a reality. Needless to say it has been a hit wherever we went.

I do think we managed to peg the Halloween fun meter. We participated in two trunk-or-treats, so we are definitely getting some milage out of chair's halloween costume. Tonight the plan is to hang out in the driveway and pass out candy(sure do miss our Charleston neighborhood this time of year). On Saturday, Max, Ms. Robin and I headed to the West Wales RV Park (random, I know) for a Halloween train ride. We rode the train, went through a haunted maze (Max was such a big boy, not even scared), and picked out pumpkins to decorate. It is such a treat for us, as this whole experience is COMPLETELY ACCESSIBLE, plus they let Ms. Robin in for free since she is his caregiver! What a great experience. Max is already excited about their Artic Express for Christmas.

Here we are just before heading into the haunted maze. Max promised not to cry or be scared. We had a quick peek to make sure it wasn't to much for him. He seemed to like it, but was pretty adamant about not going back through on the way out.

Now the countdown is on...two weeks until Max turns the BIG FIVE! Next post will probably be lots of birthday pictures!

Peace and Treats!

Infusion Day

Today is infusion day, one week late, so I thought it would be a good opportunity to provide a High family update.

Infusion (which Max gets every three months for bone density) was supposed to be last week. I decided it was time to be honest with Max and instead of springing the infusion on him when he woke up that day I decided to tell him the evening before, in the hopes that it would prevent an early morning meltdown. It’s already tough because the hospital is an hour from our house and we have to get him up extra early to get there on time, all and all not a great combination for Max’s mood. Only a few tears were shed, but the next morning after an uneventful night of sleep Max woke up with a tummy ache and high heart rate. I had to wonder if this was from anxiety, but we canceled the appointment and it was a good thing, because when he finally woke up on his own, 3 hours later, sleeping in to almost 10am, it was clear he had a cold. Thankfully, it was a minor cold and after 2 full days of rest and aggressive respiratory treatments he was all better. Although the middle of the night treatments were a little taxing for mommy, especially since it was a new level of training. It was this particular night nurses first go at middle of the night treatments, a testament to how well he has been recently.

So here we are one week later and once again I warned Max the night before. I think it helped tremendously. Typically he cries all morning on an infusion day, but today only a few tears were shed. We have talked at length of the benefits of this treatment with him. Our “one and done” nurse was able to come through and Max got to tell her about his Halloween costume. He has been a perfect gentleman all day. At one point I thought maybe it was something in the infusion and then I looked around and realized all the nurses were young and cute…enough said. All total he was such a trooper even though he got his flu shot too. 

Our last few weeks have been pretty low-key for the most part. Max is continuing to enjoy school and I swear Ms. Robin e-mails me about 10 pictures from every day at school. Max is making friends. In fact, one little boy told his mom that Max was his best friend. That made my heart so happy. I would post more pictures, but since there are other kids in the pictures I don’t want to overstep any boundaries.

On October 2^nd we celebrated my mom’s birthday. Max literally saved the day by saving the cake he and I baked together. It was a chocolate cake from scratch and I had forgotten to add the oil. Just before I was going to put the batter in the pans Max asked when I planned on putting the oil in. Boy would that cake have tasted awful and all our hard work would have gone to waste. Here is a picture of us with the cake. Nurse Nancy provided mom’s balloon crown.

In big news…our lift for the new van is FINALLY IN! Our van will go into the mobility shop next Monday and it will take 3-4 days but we will finally have Max’s “elevator” in for him to use. Watch out P’cola! I’m still working on my driving skills. We are so grateful to have been able to borrow my grandmother’s van and it is a testament to my grandfather’s planning to make sure my grandmother would always have transportation despite any future physical limitations. Who knew that we would see the immediate benefit of such a decision, guess Dzia-Dzia is still taking care of all of us. Thank you so much to Busia and my aunts and uncles for being so generous. It has made the last 4 and half months bearable. Had we had to rent a van it would have run us $150 a day or Max would not have been able to leave the house in his power chair. We feel so blessed to have been able to take Max to school and therapies and basically live life as normally as possible.

Now for a prayer request: Aaron’s brother, Andrew, had shoulder surgery recently and is experiencing complications in the form of blood clots. This is a serious issue and he has had to go down to the University of Minnesota for surgery to take a vein from his leg and put it in his shoulder. The surgery is Thursday (tomorrow) morning. Please keep, Andrew, his wife, Jodee and their kids, Sam and Kaydee in your prayers.

Peace