Monday, June 29, 2015

Winds of change...

Change is not ever a fun thing to deal with.

Due to a lot of different reasons, our house is in a season of change.  Some things are exciting, some things are scary, and some things are sad.  Nonetheless, the tides are changing and leaving a lot of things feeling discombobulated.

I sat down today and made a list of the doctors/nurses/teachers/therapists who have given their notice to take other jobs or move to other offices in the past six months.  These are people who have been part of Max's team for many years, to just the past year.  But they've all been an important part of his care.

In the past six months we've said goodbye to ten doctors/nurses/teachers/therapists, in addition to his team of teachers at elementary school.  These are people who know how to care for Max without me having to remind them.  These are people who know the difference between bring him to the hospital, or handle it at home. These are people who know how he jokes, or how he learns.  These are people who have learned how to hold his head just right to get him to go to sleep.  And we've had to say goodbye and teach a whole new set of people the ins and outs of Max.

For the doctors who are moving on, we're grateful for all they've done for Max through the years.  It is incredibly difficult to get to know new doctors.  With doctors, you might see them once or twice a year.  When the same doctor has been following him for years and suddenly that changes, there is an awful lot of things to cover before they feel comfortable knowing how he works.  Quite honestly, it's exhausting explaining every little thing and pinpoint of medical history at every doctor's appointment.

For the nurses, therapists and teachers it's a bit different because they are the people Max sees every week.  They come into our home and know Max quite well.  I know with them it's always a consideration that they will be leaving Max in their decision to move on.  While I always appreciate that, it doesn't soften the blow that I will have to explain to him that they won't be coming back, or how much time and effort training a new person will take.

I think this must be one of the hardest things about needing so many people to keep him going.  I often wish we didn't need nurses, and weekly therapies, and so many specialists and doctors just to keep the big guy going.  I'm grateful, so very grateful we have them all, but just wish we didn't need it.  What must it be like to not have so many people having input on every aspect of your child's life?

For now, we'll keep training replacements.  And hope it works out that we click so there isn't as much change for him, and us coming up.  I'll be holding my breath a little at the months to come and the changes that will continue to come.   And know that we've been through more and ended up on top.

Sunday, June 21, 2015

Turtle Power...

We're still doing the summertime thing...resting, trying to keep cool, and doctors appointments.  Max has a new interest, and as it goes when he tells us something new he likes, we try to let him enjoy it as much as he likes.  His newly found joy is in turtles.  And I'm not talking about the teenage mutant type either.

We took him to our local aquarium today to let him see some of the big guys up close.

He wasn't sure what to think of our explanation of the aquarium, since we simply took him to a fish store yesterday to try to let him see some of the fish there before paying to go to the aquarium.  He liked the salt water tanks we saw so much that we had to find time to take him to the aquarium.  

The first animal he saw was this giant snapping turtle.  


Grouper bigger than all of us!

This area was Max's favorite. The tank formed a tunnel above us and the fish all came right up to the glass for him to see.  

And of course, his favorite swam by several times for him to get up close to it. 

He kept looking up for the turtles to swim by.  There were people scuba diving with the fish and he thought that was funny, but he really had to keep his eye on the turtle. 

Max found a new friend.

Max did well not to kick the glass, but he so wanted to touch the turtle.  

Max is so much like his daddy.  I think they both wished they could have just jumped in the tank and gone swimming with the fish.  

We called these Batman fish because they were yellow and black. 

More turtles!!

At the end, we got to the sharks.  Max hasn't been here before so didn't know it was the end.  When he started crying and getting upset I guessed it was because on the documentaries he's been watching about turtles, it shows sharks eating turtles.  Once we assured him no turtles would be harmed in this aquarium visit he was okay to look at the sharks. 

This was our favorite shark with his funny spiky nose. 

And lucky him...another turtle to say goodbye to. 

I'm glad we were able to take him to see the turtles and fish.  It's not the best aquarium I've ever been to, and the people oblivious to a child in a wheelchair they kept running into made it difficult to enjoy all the parts of it.  But, seeing Max's face when he got to see his favorite animals was worth the effort. We'll just have to figure out when it's not as crowded and try to take him again!

Friday, June 12, 2015

Lazy Summer...

 I can tell the months of the year based on Max's sleep schedule.  I can't explain it, and neither can his doctors, so we just let him sleep.  His schedule always rights itself at the end of summer.  It could be he needs more seizure medicine.

It could be his increase in calories are too much at once and his schedule is flipped.  It could be it's hot and boring without school and regular therapy schedule.  It could be the higher dose of testosterone is messing with his sleep cycle. Whatever it is, Max stays up all night, and wants to sleep most of the day.  If I didn't think it would look like really bad parenting, I would take video of just how loud I can be and try to wake him up and still he snoozes.

I know this much, it happens every summer.  The list of reasons above have all been what we've attributed the extra sleep to through the years.  But, he's consistent.  He grows in the summer.  He sleeps in the summer.  And when he sleeps we have to let him.  It's partly due to his metabolic disease, partly due to his having epilepsy.  If his body is telling him to sleep, then sleep he must.

We take him for a weight check next week, and we'll see if we can narrow down what is happening with him sleeping so much this summer.  My guess is we're going to just chalk it up to another lazy summer.  We're so, so grateful for nurses this year while he sleeps through the days and keeps them company all night long!