Saturday, September 6, 2014
Ok so whats been going on??
Ali has been doing SOOOO good with her speech and language. She has learned some new signs. On top of the all done, please, and more. She has learned eat, thank you, and tickle. I love it when I am sitting on the couch and she comes up to me with the biggest smile on her face and signs for tickle. She has also been doing good on her communication skills, example: I was painting my nails one night and she came up to me and signed please and then looked down at her feet. Something that else I never noticed till just recently, she never made a sound when she was unhappy. Now she does it all the time lol. She still doesnt say no or shake her head at anything, but she has started to grunt or scream her displeasure at things.
She has started school the 2nd of this month. She goes to school Monday thru Thursday, from 12:00 to 3:15. The first day we had some problems with the school bus but after that things have been good. Granted its only been 3 days but she has taken to getting on the bus and off the bus without any problems. Both her teacher and the aide have told me that she is such a firecracker and yet such a sweetheart. It turns out that Ali is the only non verbal child in her class. Everyone believes that by the end of the school year she will be talking alot more since she is around other children that talk.
A few days ago I signed Ali up for a running buddy from a group called I run for Micheal. Its a neat group that assigns a running to a child or adult that is disabled and are not able to run themselves. The disabled person talks to the runner and gives them the encouragement and someone to run for. Now Ali has no restrictions and is asymptomatic but I just like the fact that we can give someone else something to push for and that Ali can learn from someone. Then you also have the fact that at anytime something could change and Ali may end up on restrictions and wont be able to enjoy running or anything like that. It sounds bad to put it like that and I NEVER want anything to happened to my baby girl, but I look at things from the stand point that I almost lost my daughter at such a young age that you never know whats going to happen. I dont let the what if's run my life but I keep them close and keep myself prepared for anything.
The only other news I have is that my sister gave birth to her second baby girl on Friday. Her name is Talia Rose and she was 7 lbs 10 oz and 20 1/2 inches long.
Tuesday, June 10, 2014
So Ali has been blooming with her speech! She has gone from a 4 word vocabulary to a 15 word vocabulary. The goals that her speech therapist has set for her she is already reaching. She has said on multiple times the new speech therapist is going to have to set new goals for the school year. I am starting to believe that me staying home was truely the best decision I have ever made.
On a different note, we saw the sleep specialist and they checked her ferritin levels. It tuens out that if feritin levels are low they can cause issues sleeping and can cause someone to twitch and jerk in their sleep. Well Ali's levels were 19.7, they want them to be 50 or 100. So we have started her on iron supplements and we go back in 2 months and see were her levels are at then.
Wednesday, May 7, 2014
|Taken last month|
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. http://www.sensoryprocessing.yolasite.com/
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.
Friday, January 17, 2014
I can't believe I havrnt been keeping up in her blog! I have been working a lot more and it just slips my mind. Again I am writing this on my phone so if there are mistakes that will be part of the problem.
Ok so last left off, we were trying to figure out where aly was with her developmental problems. After they did a more in-depth eval we have found out that developmentally Aly is around 17 months old, her receptive communication is 16 days old, and then her expressive communication is 2 months old. We have speech out once a month, ot out once a month and then she has her home teacher come out twice a month. She also has group twice a week. Where language wise she is still very behind we are seeing a difference. She is making more vowel sounds instead of just grunts and mmm sounds. Her first actual word was hot, and just last week she called me ma for the first time.
We finally had her sedated hearing test done and her hearing is prefect! So that shines light on what could be behind her other issues.
Monday, July 22, 2013
So before I actually begin I want to say that I am typing this on my phone and if there are mistakes thats why.
Ok so were to begin....
Well I am not sure if I have mentioned this or not but early on came out and evaluated Aly. She is very slightly delayed in her motor skills, but the main concern they have is her language skills. She has a hearing test this Wednesday to see if that may be part of the problem. They also said she needs further evaluation, but they cant do that till September. We go to play dates ever Tuesday for an hour.
Some may find this next thing not so big but to me it is. Yesterday Aly actually an knowledge her cousin. They are around 15 months apart and ever since Lily was born Aly wanted nothing to do with her. Also ignored her and acted like she wasnt there. Yet when they were over yesterday Aly was hugging on her and was trying to pull Lily to were she wanted. It made me so happy seeing her do that.
Aly has also learned how to take off her clothes and diaper. She loves to take them off and run around naked.
I know every child learns at their own pace, but seeing Aly doing stuff that she should have been doing months ago makes me so happy. I get excited over little things that some would think odd.
On to other great news!!! After 6 years together Rob and I have finally gotten married! Its so great to finally have the same last name as Aly.
Tuesday, June 4, 2013
So today Alyzea weighs 24lbs and 11oz, and is 2'9''. So her echo was good, her pressure gradient is around 35. Today though her EKG was showing that her QTc was high, she was up in the 400's with that. Because she has never had a problem with her EKG's before he order for her to have a Holter Monitor on for 24 hours to see what is going on. Till he finds out what is going on she is not allowed to have any Zpacks for infections.
On a another note, we found out today that she actually has a unicuspid valve instead of a bicuspid valve. A while ago I mentioned to him that I thought that it was a unicuspid valve, but he had told me no it wasnt. It turns out that Mott's says it is and when he looked again it is a unicuspid valve, but sometimes it looks like a bicuspid valve. He actually showed me on the echo today.
We go back in 4 months to see how things are going.
Wednesday, May 8, 2013
Right now the main concern that the doctor has is her developmental issues. So the doctor wants her to have a hearing test and have early on come in and evaluate her. So its a waiting game.
Next month we go to the cardiologist and see how well her heart is doing.
(really short post this time lol)