Wednesday, May 7, 2014

cardiologist, neurologist, IEP, and achievements... plus more

Taken last month
So last month we had a lot going on. Everything from my parents moving to me leaving my job to Ali having another EEG and getting referrals to 2 new doctors.

Lets start with the cardiologist, Ali went to her 6 month check up on the 10th. Good news? hell only news? she doesn't have to go back for a whole year! yep that's right. Ali is doing so good that Dr. Loker told us that we don't have to come to see him for a whole year! I was hoping to have what her pressure gradient was but he never sent out the normal letter that he does. Oh well, my baby doesnt have to go back for a whole year, doesnt get any better then that!

So around the end of March Ali was having issues that looked alot like seizures activity. She was doing some crazy jerking movements and tremors. Around the same time that this was going on she was having major issues sleeping through the night also. I happened to get the jerks on my phone so I took her into the doctors to show them and find out what would be causing Ali not to sleep through the night. They ordered another EEG and sent refarrels to both a neurologist and a sleep specialist. We had the EEG done and everything came back good on that. We go to the sleep specialist on the 20th of this month and we saw the neurologist last month. The neurologist gave her the all clear on her end. She doesnt beleive that Ali has any neurological problems at all. The jerking and tremors have actually gone away now too. I believe it has to do with the facted that she wasnt sleeping that good at all. Of course now that we are seeing a sleep specialist she has started to sleep through the night. 

On the 25th of last month I went to Ali's IEP meeting. Starting next fall Ali will be going to preschool 3 hrs a day for 4 days a week. They are going to be putting her into a Special Ed Class, so that she can get more one on one learning. Even though she has been doing great with speach she is still very behind. On the AEPS Social- Communication Subtest Ali scored a 2, the excepted minimum for her age group is a 15. The things that they are going to be working with her next year is for her to keep eye contact with someone that is talking to her. Another thing they want her to be able to do at the end of the school year is to engage in activities requiring joint attention and turn taking. Ali will be also getting OT at preschool, they are going to be helping her with her attention span and helping her transition from something she wants to do to something that her teacher wants her to be doing.

I also had a talk with her occupational therapist and the neurologist(at different times) about the chances of Ali having autism. Both have told me that yes she may show some signs but that she doesn't have autism. What she does have is Sensory Processing Disorder, SPD, and that autism and SPD overlap each other greatly. Ali is was you would a seeker, she finds way to get input. Weather it being standing on her head, spinning in circles, and jumping around on things. She also suffers from sensory overloads, basically it looks like she is having a major temper tanturm. If there is to many people in one area or if a lot of people are talking and walking around with the tv on top of them. It can become to much for her to handle and she starts to cry. She will continue to cry until we either leave or I take her to a room that has the lights off and just rock with her. 

Its because of this and because of other personal reason I decided it would be better if I was at home with her. So on the 25th of last month I left my job. I want to be able to work with her and really give her the attention that she needs to help her far in school. I know what it was like to get extra help in school and I felt stupid and refused to take the help. If she needs it, then I will be there telling her that she has nothing to stupid about or any of the feelings I went through. Anyways got off topic for a minute there. Back on track, I believe this is the best thing, and I have noticed, and so have others, that since I have been home Ali seems more out going and happy. Now she has always been a happy child but she just seems to be even more happier. I also have been wondering if me being home has helped with her sleeping at night.

Now on to all of her achievements!!!! 
So some may find these to be not so big of a thing, but when it comes to her they are the first of many that I will be excited about. So the biggest one I have to say is, she has two new words she says. They are go and up, she also has her own sign for please and more. She has been working on not having her binky all the time and she has been doing wonderful. She only gets it when she goes down for a nap or bed time. When I show her it she will grab her blanket and either sit up in my lap or walk to the bedroom so that she can go to sleep. She has also started to listen to one step instructions, and to go along with that one she has also started to help pick up her toys at the end of the night. 

So all in all everything has been going great when it comes to Ali. She is growing like a weed and everyday she is showing me something new. If you are interested in learning about SPD here is a website that will help you understand it.

On to non Ali related news. As I said early on April 23 my parents moved out of state. They wanted to try somewhere new so they moved to down to the south west. I really dont like that they are so far away from me but I know that it may actually help my mother in the long run with her health. My sister is going to be having another little girl in September.