Wednesday, November 24, 2010

6 month follow up

We just got back from a 5 day trip to Loma Linda for Gabriella's 6 month follow up appointments. We were in Arizona 52 days before returning, and it felt like forever, until I pulled up to Redlands, California and felt like we never left. I truly love it there...

Everything looks great with Gabriella! She had kidney function testing, in which they injected her in one IV with a substance and over the next 4 hours, took blood from another IV to see how her kidneys were filtering out the substance. They are working great, which is a relief to us! With the transplant medications, they can be very hard on the kidneys, creating problems over time.

Gabriella has her blood drawn also for genetic testing, which I finally got approved after months of arguing. Why not test her blood? We could get answers and if nothing else, they can maybe extract some information from her blood that could help future kids who are diagnosed with Hypertrophic Cardiomyopathy with Restrictive presentation. I'm all about using the tools we have accessible... and while it does cost my insurance money, it is a responsibility to get all the information we can for medical purposes. Those results will take a good 8 weeks to come in, and we will head back to Loma Linda for a follow up with genetics.

One of her med levels has been running low lately, and again at this appointment. They increased one medication a little which seems to be a trend with Gabriella! Her whole childhood will be like this, as she grows, so we will keep a close eye on her numbers and blood draws to catch her deficiencies quickly!

Gabriella was also placed on Magnesium supplement a few weeks ago as her magnesium levels were severely low. This medication is compounded and if any of you transplant moms know, it is miserable to draw up! Gabriella is going to try swallowing the tablet on this next go around! Shes such a big girl!! She is also on an inhaler for her new asthma diagnosis and is doing a million times better with her cough!

Every issue we run into is super minimal, and overall we are so happy with her progress. Speech therapy is biweekly now, and we will be filling in with therapy from the school district. We went to monthly transplant clinic appointments which totally just floors me! I cannot believe we have weaned off that far!!!!

Can you believe it has been 6 months? I sit here in my apartment feeling like it was just yesterday we got that call and was scrambling to leave here. I think of all of the time that has passed in between and while it looks like ages on paper, it feels like moments in reality. Then I look at Gabriella and all time seems to not matter when I see how much older and mature she looks!

1 comment:

mom2joy said...

I have followed your blog as your precious daughter received her new heart and am glad she is doing so well. This might be a tiny hint with Gabriella swallowing pills. A pediatrician told me to buy tiny M and M's and have my daughter practice with them. It worked great. Once they get the tongue action, they've got it, even with way bigger pills. Keep up your good work!

Carolyn (in Las Vegas)

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