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.

Sunday, November 16, 2014

BIG ACCOMPLISHMENT!!!!

SORRY FOR THIS BEING IN CAPS BUT I AM JUST TO HAPPY THAT I CANT STOP!!!!!!

ALI COMMUNICATED TO US!!!!

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.

Saturday, September 6, 2014

PRESCHOOL and other things

Where does time go?!?!?! it doesnt seem like it has been that long since I made the last post!

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

Some great achivements!!

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

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.    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.