Sunday, November 16, 2014




Well she communicates with us by saying please and thank you or pointing at things. But last night she actually "told us" what she wanted. She has these pie pieces that go with a tea pot her second cousin got her for her birthday. For the longest time she has been missing one piece to the pie set. Well she grabbed her dads hand and pulled him to the couch and was signing "eat" while trying to look under the couch. Well I got up and looked under the couch and there was the missing pie piece. When I give it to her after I got it out she started to "eat" the piece. It wasnt till after I sat back down did it click that she had actually communicated with us. She didn't know how to say pie piece or whatever, so she told us the only way she could that "food" was under there.

I was so happy that I had to call her preschool teacher on her day off and tell her what Ali did. I have been going crazy thinking about it and I just cant stop feeling pride in my little girl.

Friday, November 14, 2014

All clear from the cardiologist!!

watching while we did the EKG
So I took Ali to the cardiologist today to go over what happened last week. She has been her normal self this week so I wasnt really thinking anything was wrong but better safe then sorry, and it turns out that she is all good. Her pressure gradient is still mild to moderate, there was some concern last time because they were getting different readings for her pressure. But the versed wasnt working that good last time. This time it worked great and they were able to get a good reading. He is happy with how well she is doing. While they were doing the echo he was going over all her old EKG's, it turns out that her QT's are long, but that she doesnt have prolong QT syndrome. He says that he doesnt see that being a problem and that the only thing we need to worry about is what meds she is allowed to take. I have a very long list of those and of course that means that zithromax is back on that list. So that means that the only thing Ali is allowed to take now is Bactrim for any infections that she gets. I know that I should have been so happy that at our last appointment( back in April) he graduated her to a year, but I am happy that we were able to get her in this week. I wasnt ready for yearly check ups, with her being non verbal it makes it hard to find out what is hurting her and what is wrong. We go back in April for our next check up. 

I know I have said this before, but I love this office. Everyone is nice and laid back. They remember everyone also. Heather, the lady who had done Ali's very first echo had to come in and see her because she was finding it hard to believe that Ali was 3 years old. Dr. Loker gave his phone to Ali so that he was able to listen to her heart and was telling me about different apps for my phone that I could download for her. 

Playing with her Cardiologist phone

Saturday, November 8, 2014

Ugh, really need to post more

I have been really slacking on the blog front. But the nice thing about it is now I have the laptop back so it will be easier to keep updated more. 

So last month my baby girl turned 3. She is getting bigger and bigger everyday. She is still not talking but she is starting to do better with telling us her wants using different means. We just had parent teacher conferences and everyone is happy with the progress that she has made, and she has come a along way from the first week of school.

As of right now she is 30 lbs and is around 2 1/2 feet long. Everything went good with the pediatrician and they are happy with where she is right not. A week after her wellness check we went to her ENT and her right tube has come out and the left tube is still in place. Hopefully we dont go back to what happened before she had the tubes in. We haven't seen the cardiologist since Apirl, but do to behavioral issues that have been going on this last week we will be going to see him next week. 

All this last week Alyzea has been very cranky. She was waking up at all hours of the night and crying for atleast an hour before she would relax. Sometimes we would have to give her Tylenol and then she would be fine. She was also having low grade fevers off and on through out the weekend. She went to school one day and out of the blue she started screaming and wanted to go home. Nothing the teachers did made her happy and they even had other teachers coming out of their classrooms trying to help calm her down. Thats what it was like at home also, she had a couple of days where she would be laughing running around the house then out of the blue she start crying and was just unhappy. We thought that maybe it was her teeth but when I looked in her mouth everything looked ok. So even though I didnt think it was anything to do with her heart I called her cardiologist to see if there was anything they could think it was. They said that they didnt believe it was anything that related to her heart but that since she had significant aortic stenosis they would be happy to take a look and make sure. After the weekend when she was fighting the fevers we took her to the pedis office and they found nothing wrong with her. So who knows what is going on with her, and with her being non verbal it is harder to find out what is wrong. 

On too non Aly news. With the holidays coming I started working again so that we will be able to spoil our families with gifts. I like cause I am only working part time, so I can still spend time with my family. Come January I will be also going back to school. It has been something that has been on my mind lately and I just believe it is time to finish this chapter in my life. I think that I will be going back to for a two year degree in early childhood education with some training in special education. I have always loved children and I think that this is the best thing for me.

As I said before, I now have my laptop back so I will be able to post some more about Aly and the family.