Areli Rose's Disease: April 2013

It's been awhile since I have written. This has been the longest Areli has gone with out any major appointment or procedure- about a month! It has been nice to just sit back and be "normal", so I took a break from all the medical posts. This is also the longest she has gone without getting a blood draw- but that will end soon.

Although this quiet month was welcomed and enjoyed, it didn't go completely without incident. Areli battled another cold, which left her with a double ear infection and a dose (or 20) of antibiotics. She is still pulling on her ears, so I am not convinced they did the trick. We also received a call from Dr. M (Liver specialist) and Areli's ammonia levels were elevated in her urine, so we need to do blood work to check if the ammonia is in her blood or not. Elevated ammonia is another sign that the liver is not doing its proper job and too much excess ammonia is very dangerous.

There were also positive developments in Areli this past month! She is starting to trust more people who are important in her life. I, personally, think this is because this is the longest she has gone without someone "hurting" her, so I am sad to have to bring her to the next blood draw. She also has become just a little crawling machine, which has eased some of her fussiness. Most importantly though, we finally went to her therapy evaluation. Areli did very well and it was decided she would only need speech therapy and learn-to-trust-other-people-and-separate-from-mama-at-least-long-enough-so-she-can-pee therapy. Okay, that last one may or may not be a real therapy, but we are doing it anyway!

Finally, today was our first meeting with the Miracles for Mito support group. I don't think I can sum up the meeting in enough words to fit in this post, it was that great! It felt very comforting to "belong" somewhere. All the families were great and welcoming-you could feel the support they have for one another. We had the chance to hang out with some of the coolest, most beautiful kids ever and I was able to meet and speak with doctors who will be important to Areli in her journey with mito. I am very thankful for this support group because without it I wouldn't know one other single person with this disease. It is already a scary road to be on and because of this wonderful group we don't have to be on it alone. I left the meeting today feeling very hopeful and uplifted.

As great as the break from doctors was, I am anxious to "get back at it". We have Areli's long awaited neurologist appointment Monday. The status of her brain will give us many answers as to which direction her disease may take. Stay Tuned...