Well we have an appointment on September 9th for Kaytlin to get her review for SSI. Because we haven't been able to get into the docs for the official medical diagnosis the SSI office wants their own doc to review.

I also got a call yesterday and her official medical review will be December 9th. It is so bittersweet. I mean yes I want the waiting to be over, no I don't want it definite. When it isn't an official diagnosis you still have that thought in your head that maybe everything will be different tomorrow morning. Denial I think it is called.. Unfortunately I see every day how she is in fact about 6months+ behind now. It is hard when there are things like physical that she is advanced you know.

I met someone today that didn't even know about First Steps. Maybe, just maybe God has given me Kaytlin so that I can reach out to other parents and let them know about First Steps and that they should follow their guts, as I have always said, it never hurts to get your child evaluated especially if your gut is telling you that something is not right.

Hey guys. Well life is getting quite stressful with Kaytlin lately. It seems that no matter what we do it seems to be more and more stressful around here. I am sure everyone is saying oh that is just her being at that age, but imagine horrible 2's and having a developmental delay on top of it, and the fact that she doesn't comprehend the discipline makes it even more rough.

We were at the docs yesterday (Rob and I), and there was a little girl who will be 2 in November, and her mannerisms were exactly like Kaytlin's. I felt like I was watching Kaytlin in a younger body. I was laughing sooo hard, I was wishing Kayt would have been with us because she would have been so fun.

Kaytlin is now so terrified of the vacuum that when I opened the closet it is in yesterday to get her blocks out she saw it pointed and ran crying to the couch. It used to be that she could get her blocks etc out of there and it didn't bother her. I feel so bad for her. We even tried to buy a toy vacuum and couldn't even put it in the cart at wal mart!

well the eeg went good she left everything on the whole 24hrs. When they took the stuff off she freaked the whole time and refused to lay down. glad its over

Kayt goes in today for her 24hr eeg. I am nervous about her keeping the wires on and bubby not taking them off!

Okay sooo sorry it has been soo long. I cannot believe it has been since June 8th! I have been really busy in my defense.
Okay so Kayt has an appointment to set up for a 24 hour eeg because of the middle of the night issues that she has, for like 3 days they were really bad earlier this week. She has had the waking up freaked out cold sweating for as long as I can remember and it isn’t every night, but sometimes we go through periods where it is. We know it isn’t night terrors because she is awake. Any who they want to make sure there isn’t something happening while she is sleeping that we cannot figure out since she does not understand when we ask her what is wrong, and she doesn’t offer to tell us (if she can).
We have figured out that her either her motor skills are not processing correctly to move her tongue up to the top lip or her tongue does not have the muscle to do so. We have been working on her chewing on items with her back teeth because we found out she was not using her tongue to move them over there. If it isn’t one thing it is another right. Her speech is getting better and I am so glad that she is able to tell me more things! It is such a blessing every time she talks about something new that I understand. She is currently into drawing circles, lines, and as of today squiggly lines lol. She told me she was writing her name lol. She continually crawls into her brothers bed at night, they are both in toddler beds in the same room, and I think she feels more comfortable with him up against her. It is only logical since she does have that sensory pressure need anyway, so as long as he doesn’t mind it helps her to sleep better.
We had her re evaluation the other day and they of course are recommending continued treatment for her, if we cannot get an OT to come once a week than they will okay the hippotherapy, which is awesome! She has an appointment for a speech therapist at the hospital since EI has not been able to get her one since her last one quit doing children that are out as far as we are. She still has her psychologist and developmental therapist. We learned after upping her DT to 2x a week that it isn’t making any difference. The only thing it has done is gotten Kaytlin more used to her therapist and made her not want to do anything for her… makes for a pointless session lol.. We are still at the same point in potty training. We will be meeting with the developmental preschool person soon too.

Well I better go it is 12am and I am wide awake, I need to get some sleep

We had some occupational therapy today and it was nice talking with Melanie. Kaytlin had decided to eat some sand today out of her sandbox. Can you say yuck! Anywho we talked a bit about that and the fact that Kayt's eval is coming up on July 1st.
Kayt played a lot out on the swing set today and had a blast. Then tonight she was supposed to go with Becky to her house since we are all going to the zoo in the morning, and she threw a fit! She has always loved going to her Becky's house, this was the very first time ever that she wouldn't go. Well then I put her in bed about 20 minutes later and she went to sleep. Then about 1 1/2 hours later she woke up completely freaked out. No build up, nothing, just full on screaming freaked out. I ran in her room and she was covered in sweat and crying her eyes out. I picked her up and came and sat in the living room and didn't realize she was falling asleep on me. I went in the kitchen and layed her in my arms and she fell back asleep but held tight to me. She kept fighting sleep just to stay in my arms. I finally got her back in bed and she fussed for a couple minutes but her tiredness won and she in now asleep again. I felt sooo horrible for her tonight. My poor baby girl, I just wish I knew what the reason behind this was whether it was night terrors, nightmares, or confusion from her disability.