Sunday, July 15, 2012

After a long hiatus...

After a month of craziness and a huge hiatus from writing here, everything seems to have settled down at least a little bit. We were gone for the last bit of June and first of July, totaling about 3 weeks. While the trips were wonderful and much needed, it is so good to be home and settling back into the lull of summertime around here. I hope to add photos from our trips to Marco Island and Kentucky throughout the next few weeks.
The kids had a blast on our long adventure. I can't get over how much easier it is to travel with them the older they get, and how they can adapt to later bedtimes and crazy schedules with much more ease. I also can't believe that school starts in a month where Abby and Emma will be in 3rd and 1st grade. We hope to make the most out of the rest of the free time we have this summer...
...starting with Emma getting her tonsils and adenoids removed this coming Friday. She is a bit excited about the popsicles, ice cream, pudding, and added attention she is going to get (she has a count down every day until surgery day) and just a wee bit nervous about the actual procedure. Her best friend's dad is her ENT, so she is a lot more at ease with "Mr. Garrett" taking good care of her. And even though we are well versed and strangely more comfortable with medical procedures, it is quite comforting knowing that she will be under the care of one of our friends. And I am really looking forward to seeing how this surgery will impact her positively afterward...she really needs these huge suckas out!
After having a rather rough month of May, Nafey boy has been doing outstanding the past few weeks. It has truly been incredible to see the transformation in him once again with better eating, better energy, and pure happiness. His surgeon increased a couple of the settings on his stimulator the end of May because he was once again vomiting, nauseous and bloating pretty badly and was getting most of his calories through his gtube once again because of his lack of eating. The changes in his stim settings really helped him through the rough patches of his body trying to bounce back from being pretty sick, and I think it has definitely played a huge role in how well he has done through the craziness of this summer. He's consistently eating better now than he has in a really long time, and that along with still supplementing with formula at night has helped him gain some much needed weight and height.
Nate had an immunology appt in June that brought about some more changes for the little guy. He was diagnosed with hypogammaglobulinemia (low IgG) when he was just a few months old, and IVIG therapy has been mentioned at nearly every appt with our immunologist here and in Houston as a probable treatment at some point. We have been hesitant about it until just recently for several reasons. But looking at the trend of his IgG, along with his t- and b-cell subsets on his lymphocyte panel, he may have a common variable immune deficiency (CVID) now instead of just hypogam. Additionally, he had blood work sent to a lab in Cincinnati that tests for certain types of lymphoproliferative disorders, and this can help us determine if he has a true increase in double negative t-cells like his labs may be pointing toward.
So, Nathan's immune system is struggling, and his immunologist here has said that she believes that he will benefit from IVIG. In fact, she said that due to the detrimental effect illness can have immediately and in the long run for patients with mito, she would rather most of her mito kids partake in this therapy. From what we have been told, it takes a lot of energy to create properly functioning immune cells, so immune deficiency is often seen in mito disorders. We have finally "come around" to the idea of IVIG for a few reasons...his immune system is not improving at all, his organ function seems to decrease at some level each time he gets sick, we want to preserve the function of his ICC cells in his stomach so that his stimulator can continue to work well, we want to keep open the idea of him attending school, and IVIG is now offered as subcutaneous infusions that can be given at home.

Nate's first infusion will be within the next few days. He will be getting 2g of Hizentra each week and will see his immunologist every 4 months to keep track of his immune levels. A nurse will come to the house for the infusions for the first couple of weeks, and then I'll take over the care from there. He should have 2 subcutaneous needles inserted, and the infusion will more than likely last just an hour and a half. Our hope is that this treatment is the catalyst to keep him well, improves his wacky immune labs (and get his IgG to stay above 500!), and helps him continue to improve overall.
And finally on the changes with the little guy, we were approached a few months ago by our local Children's Miracle Network asking if we would consider Nathan being a local ambassador for CMN and Shands Childrens. Of course we were honored. The ball quickly got rolling with interviews and fundraising opportunities. We are participating in an online/radio fundraiser for about 6 weeks coming up. Team Natester will need participants on our team to help drum up support via online social media, etc for this fundraiser that gives directly to Shands Childrens. I will include more information once we have the initial captain's meeting next week. This is definitely going to be a fun adventure for our family, and we are so happy to be a part of such an amazing organization!
Okay, more pics will follow in the coming days. Just wanted to jot down some of the changes over the past few weeks for us all. I look forward to writing more on here again.


jengame on July 21, 2012 at 1:48 AM said...

Sign me up!

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