Alex and Maddy

Alex and Maddy

Friday, July 4, 2008

Happy 4th of July!!!

Thin​gs are starting to look up! We spoke to our breeder yesterday. We have always been really close to them. They have told us just to start the heartworm preventativ​e again. They said a lot of times that will be enough. It will also give us time to save up money for if we do need to proceed with the treatment.

Alex is also feeling much better. Apparently I forgot to post this, but Alex did not do well with the second mito medication. He was feeling awful and his behavior matched. After 5 days, we pulled it with Dr. Koenig's blessing.

We are expecting some important test results on Monday. A blood test that we have been waiting about 6 weeks for. It will show whther they found the exact mutation causing Alex's mitochondri​al disease. It will provide important information on what to expect with Alex as well as whether the defect is being passed down through me. Please pray for a mutation to have been found.

We received some test results back yesterday. Alex's bone age scan was normal. This is NOT good news. If it had been delayed by say a year, then Alex would continue to grow a year after his peers stopped. Because his is not delayed he will not grow more and will overall be smaller in adulthood. Something showed on his PH probe (reflux test) not sure what. We are supposed to be seeing GI in July to see if we should change anything. We are still waiting on endocrine and immune bloodwork.

W​e are repeating Alex's swallow study here on Thursday. We are using a speech therapist that we know from therapy. (They all love Alex so ALL the therapists know him) We know that this will be done accurately and let us know if there is concern for Alex's swallowing muscles. The fear is a risk of aspiration, which in a kid like Alex will lead to pneumonia and a severe illness or even death. This is really important for us to get a handle on NOW!

Tonight we are meeting our friends to go to a carnival and see the fireworks. We are really excited. It always brings a smile to my face to watch Alex interacting with his friends and enjoying just being a kid.

As many of you know, I am supported by a wonderful group of women that I have cultivated friendships with on the internet. They are all women who have children that are affected by the diseases that Alex suffers from. Although I have encountered some crazies over the years, I have also met many ladies I am proud to call my friends. For the most part we are all mothers who just desparately want the best for our children. I am proud to call these women my friends.

Alex and I are meeting one of these special ladies and her children for lunch on Monday. We are all really excited. She is right here (in Dallas). It is always good to have people close by! Kass- We can't wait.

We love you all. Thank you for being a part of our lives. For praying for us and thinking of us adn genuinely wanting the best in life for our family.

Ali

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