Thursday, June 18, 2015

No time

Because I am in school full time and work part time, I decided to put this blog on the back burner. I just don't have the time for it.
I am on Facebook everyday so I decided to make a page on there for Ali, I am hoping it will be easier to maintain.  The page address is

Friday, May 1, 2015

We found the problem.

So back story. When Ali was in the hospital for the first time (back when she was in CHF at 6 weeks old) They mentioned to me that they were going to do a genetic test on Ali. Well 5 days later we left the hospital and never heard anything back. Till now.

Early this month we went to see a geneticists, with Ali being behind, and nonverbal, and having the problems with her QT's being long. Well Wednesday I got a call from the doctor and she asked me if I knew that Ali had a genetic test done back in 2011, I told her that I did but never heard anything back from it so I believed everything to be ok. Well that is not the case, it turns out that Ali has Turners Syndrome and that the hospital knew this but never sent papers to anyone, not me, not her cardiologist, not her pediatrician. So for the last 3 years my daughter has not been getting the right care. 

Thursday morning her cardiologist called and told me how they found out this news, on top of being in shock himself. It turns out that both hospitals use the same system and when he sent his paper work over to the geneticist the other hospitals paper work was sent. When he heard from the genetics clinic he went through his paper work and when he didnt see anything there he searched the other one and thats where it was. 

So now that we have a reason for all of Ali's problems we can treat them correctly. We will be seeing a endocrinologist and a orthopedic. We go back to the Genetic clinic in June and will be going over everything then. 

Feeling on all of this, I am happy to have a reasoning for all of this, I am sad that my daughter will never be able to have children herself, and I am angry that we were never told anything about this. They should have told us, but instead we get a shock like we did when she was in CHF. 

Sunday, February 8, 2015

ENT or Audiology? that is the question....

Tell you, time sure flies when you are having fun right? 

Back in the beginning of December Ali had her right ear tube come out; and not even a month goes by and she has an ear infection in it. The infection was so bad that she ended up perforating her ear drum and had drainage with it. Two weeks after that she she had both tubes out and was doing good. Last Monday she was screaming through out the night. When she was going to bed she cried for two hours straight and then woke out two hours after falling asleep screaming all over again. Tuesday her father took her to the doctors and it turns out that she perforated her right ear drum again and had yet another ear infection. This makes 2 in a 3 month period. So now we need to figure out what needs to be done. The most likely thing is going to be tubes again. Something that I never noticed till after her ear drum popped was her behavior and her sleeping. Two weeks proir to the ear infection Ali was having a really hard time sleeping at night. She was getting up at all hours of the night and staying up for very long periods of the night. I never once thought that it could be the fluid that was causing all her sleeping problems and now I am wondering if this has been part of her problem from the very beginning? When it comes to her behavior it was her teacher that mentioned that was why she was having behavior issues at school and at home. I noticed that she was acting a little bit different prior and after her ear popped she became the happy go lucky little girl she always has been. The major concern we are having now is her falling behind on her speech. She has been making great strides when it comes to speech and now that she is having more infections, both her teacher and I are worried that this is going to damper her speech. So the 17th we go for a follow up and we are going to talk about our options. Her pediatrician said something about either going back to the ENT or going back to audiology and seeing what they have to say.

We are also all set in going and getting gentic testing done in April. I have been beating myself up about feeling like I was going behind our cardiologist, but if there is a chance that they may be able to explain some of Ali's problems it is so worth it. So look for that post at a later date. 

As for myself I am into my 4 week of school and I feel very good about it. I have it in my mind that I am going to seceded this time and not mess up like that last time I tried to go to college. So I really dont have a life outside of my daughter, school, and working part time lol. But it is going to be so worth it in the long run. So this is my apologie in advance that I really may be absent from the blog.