Thursday, October 30, 2014

Overdue Pre-Move Updates

Before I start this update, I just want to thank everyone for the outpouring of support we received after our last post. It was a really emotional entry for me to write and the amount of love that was sent to us in light of that reminded me that the positive, supportive people far outweigh the rest. Thank you :-)

Now, on to the good stuff!

Last week, Max had an appointment with his pediatrician for some vaccines and his six month well baby check up (even though he's eight months old). But we had the biopsy and all the other wonky things happening with his meds, plus getting an appointment with our pediatrician can be incredibly difficult because he's amazing and unfortunately everyone else thinks he's amazing too, which fills up his schedule. However, we also have the heart center and they're our first call if anything is going on with Max so the pediatrician is really secondary. Because we like our pediatrician so much though, we've decided to keep our well baby check ups with him since he is in constant contact with our transplant team but we'll have one in Flagstaff in case of emergencies.

(We may have made this nerdy joke before).

Max was a trooper when he got his vaccines (no live viruses), especially considering he had to get three shots at once. It's not like he enjoyed the experience but maybe he still considered it better than getting poked in the head for a blood draw.

The day after the pediatrician appointment, we had Max's monthly heart clinic visit. Max was in an awesome mood for his echo which was awesome because sometimes he's a little squirmy worm but he was flirting with the tech so he was on his best behavior.

Max's echo looked great and the rest of the appointment went well. We actually ended up just chatting with our transplant coordinator who apologized for keeping us there essentially just to hang out once we were done talking about Max but we told her that going to clinic is like "going out" for us now so we didn't mind at all.

No, no we can't.

The next day we got Max's lab results and once again . . . his anti-rejection med level was wonky and we would need to come back in for a blood draw. Ugh. At least we could wait through the weekend to give Max a break.

On Monday, we went in for a physical therapy appointment with our fourth physical therapist. However, this one was just hired and seems unlikely to leave anytime soon so we'll keep working with her. We really liked her and Max was okay with her, even though he got mad at her for making him work. He's still behind with his gross motor skills but we're seeing little improvements. Of course, the changes won't happen overnight so we're working with him every day at home. We'll see her again in two weeks and at that point we'll decide if Max needs weekly PT visits or if we can stay where we are with only coming in every other week.

The next day, we went back in for a blood draw, blood pressure check (we're adjusting his blood pressure medication), and weight check because at clinic he had, again, lost a little weight. Luckily, this time his weight was up a little! It was very slight but we'll take a slight increase over a slight decrease any day.

After the last blood draw, we finally got his wonky med level evened out and for the time being, it's good! His blood counts are weird again though so we have an upcoming appointment with the hematologist to get his input.

Aside from all that, we kept ourselves busy prepping for our move to Flagstaff! We're up north now and we'll post another update in the next day or so on all the goings on since we've been here. Pretty much all of our stuff is up here (aside from a couple odds and ends) and we're trying to unpack and get settled. However, we seem to have a very cute distraction that keeps us from unpacking quickly . . .

More updates coming soon!

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