Wednesday, April 1, 2009

What a couple of days!

Phew, we are almost done with appts for this week (EI is coming here for a therapy eval on Friday), and we're pooped! I guess it doesn't help that it has been raining for the past 24 hours and just gloomy and nasty outside.

The appts have been great this week! Right after Nathan received the mito diagnosis, we had a few appts that were utterly frustrating and disappointing because no one really knew what to do with this diagnosis and their level of concern wasn't very encouraging in the least. Looking back now, I wonder if our perception of their "care" was a little skewed by the fact that diagnosis was still quite fresh and heavy on us.

Regardless, the doctors we have seen this week have been amazing. We saw our immunologist yesterday and left feeling so uplifted...a rare occurence after these specialist visits. The PA came in first and admitted that they didn't know much about mitochondrial disease because it is so rare, but she had been doing some reading on how it could affect the immune system before she came in to see Nathan to see what we needed to look out for and such. I was impressed at her level of care and desire to help stay on top of things now that we know what we are dealing with.
Then the actual doctor came in and immediately started playing with Nate and calling him "our little Rocco Baldelli". (Baldelli is a pro baseball player for the Tampa Bay Rays that has recently been diagnosed with the same disease Nathan has.) She was so sweet and encouraging about everything, and it just warmed my heart to visit with both this doctor and her PA.

Nate's IgG is still low, but his T-cells are great and he is currently creating wonderful titers to his immunizations. In a sense, his body is comensating wonderfully to his low IgG levels. He may get sick, but at least he is able to fight off viruses and infections well. He has to have immuno blood work done every 6 months for a few years to make sure that his IgG doesn't continue to trend down and that he keeps his titers, but we don't have to see Immunology again until next year unless something comes back wonky on his labs in September.

After that appt, we picked his dinosaur orthotics up. I have to admit that I was quite skeptical about him actually needing these SMOs. Because of this, I was just as amazed at how much better he is walking with them on. Nathan's left foot has always pointed inward a bit due to his hips being tight, and he would trip over his feet from time to time. And when he would get tired, his ankles would give out underneath him. As soon as they put these orthotics on him, he walked with straight feet! I didn't even really realize how much his foot turned in until I saw him walk with it straight. And during this morning's Dr. visit (that lasted all morning), he only fell one time...a huge improvement!
This morning's visit was with the Ophthalmologist...whom I found out lives pretty close to us and whose son is starting kindergarten at the same school as Abby in the fall. We had a great time talking about all of this with hopes that our kiddos will be in the same class. Nathan's eyes look great! He is a little farsighted and we are to watch him closely when he looks at things up close to make sure that his eyes don't start to cross, but everything else looks wonderful. We did get some confirmation (from pictures I showed them) that Nathan does indeed have intermittent ptosis (eyelid muscle weakness) when he is sick. It would make sense that since his other muscles get weak when he is sick, his eyelids would as well.

Again, we don't have to go back to the Ophthalmologist until next year, making that 3 appts we already have scheduled for March 2010. I have heard of this marathon of appointments referred to as the 3000 mile maitenance check for mito patients...and that is indeed what it feels like. It's just to check to make sure that all systems are functioning properly.

Tara and Jolee came down yesterday and watched the girls yesterday and today for me. Thanks so much, were a huge help keeping them!! All in all, it has been a good week so more nose-hole instances, though Tara did have to wash black play-doh out of Emma's mouth once. Seriously, that kid.


Kayla on April 1, 2009 at 9:54 PM said...

So glad you had had good encouraging appointments. You are truly a marathon runner with all these complications and medical appointment. Keep running the race and leaning on the one who will hold you up. You are in my prayers as always.

Karen on April 2, 2009 at 4:27 PM said...

Your children are beautiful and I think of you often.

Tara on April 2, 2009 at 5:14 PM said...

Jolee and I had a blast with the girls and ya'll! Anytime, you know I will be there! I'm missing my hugs from little man today! Hope you got to rest.

Jill on April 2, 2009 at 5:31 PM said...

Yeah! I'm so glad his orthotics help! :-) Tell him I'm jealous - I don't have dinosaurs!! I'm so glad the doctor maze is being feeling encouraging right now!

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