Okay so I am either coming to the realization that I am in denial or this is just temporary and I will be in denial again soon. First I wanted to say that Kayt has had a very rough day today. She was either crying or beating up on someone, not much happy time today. It has definitely been an off day for her, which they are not that often anymore.

So to what I first was saying. I went to Wal Mart tonight to go grocery shopping alone and while waiting to pick up Kaytlin's bean bag at site-to-store a lady was there and we started talking. She had a 2 yr old granddaughter with her that is only 2 months older than Kayt and she was just talking and being a little cutie pie! Anywho her comprehension just blew me away. I am not around other children Kaytlin's age so I am not used to anything more than what Kayt knows. It really made it hit home just how much Kaytlin does not comprehend about everyday life. She doesn't even know how to tell me what hurts if anything is hurting, if she falls all I get is her needing to be held, but I have no idea what to look for because she cannot tell me where she hit. Anywho what made this hit home.. So I was telling this lady that it was neat to hear her granddaughter talk because of Kayt having the speech delay and we kept talking and then after a few minutes she said, are you sure she doesn't have autism… I said well she was just given a provisional diagnosis of autism but I am not sure that she has it… and the lady says well my 10 yr old does have it and everything you just said to me is exactly how he was. She said, he has aspergers.. he is social like I said Kaytlin was.. I have had so many people say that she is fine and nothing is wrong and she will catch up that when someone actually says that, that has been where I am now, it makes me realize how much of denial I am in. She even knew what I was talking about when I said that Kaytlin looses words, right after I said that was when she first said that it sounded like autism.

I know God gave me my princess for a reason, and she has her special needs for a reason, I just wish that we could have the final answer and move on from there. This waiting sucks for someone who wants everything right now lol. Okay I am done now, I just wanted to share this little awakening that someone at Wal Mart gave me. You know I really think it was God that had me waiting as long as I did for my site-to-store for a reason… I mean how likely is it that I meet someone who went through what I am going through where people are usually not just sitting.

I better let you guys know

Today during Kaytlin's therapy they were working on animals again. Kaytlin was saying goodbye to all the animals as they were being put away. She was down to the last two, a duck and a cow. She picked up the cow, looked at it all puzzled, then reached and grabbed the duck with her other hand and said good bye duck and put it in the bag. She proceeded to look at the cow in her other hand and then looked at her therapist, she had forgotten what it was.

I wish someone could tell me why in the world does she always lose cow? What is it with cows?? It is so frustrating that we don't know why. I am hoping it is only because of sensory. I keep saying that I don't completely agree with the diagnosis of autism simply because she shows all this progress and I think everything is working itself out, and then boom, she looses a word. It isn't like this is a first time thing either.. She even baffles her therapists. Okay rant over, sorry I am just so confused with this.

EEG results

Kaytlin's pediatricians office called me today and the EEG results are in.. Drum roll please…………………… There are no signs of seizure activity!! Woohoo. I also got a call from Kaytlin's speech therapist today and she will no longer be coming after next week for her own personal reasons. She needs to bring her clientele down to being just around where she lives, so I am hoping that we can make Kaytlin's developmental therapist come 2x a week instead of just once. Kayt loves her to death! Well not make her, but you know what I mean lol, change it to that hehe. Today I took Kayt and Patia (the girl I babysit) and Robbie to mommy and me at the cheer and dance place out here, it was great for Kayt because there is a lot of sensory input with the jumping etc. She had a blast! They will be going once a week, sometimes 2x a week for only 35 bucks for all of them!! That is 35 a month too! It lasts 40 minutes each time and we are allowed to go both times during the week or just once, whichever we want without paying more. Kaytlin has been doing quite well lately. We haven't had as many breakdowns or anything, just a snotty little 2 yr old lol. Sorry I haven't updated much, I am taking 2 classes for college right now and one is doing a semester in 5 weeks the other is in 7 weeks. Hope everyone is having a wonderful day!

 

Okay this is going to be about Kayt, but I also need a little vent here, which will make any other mom know they are not alone in these feelings I am having. First on my precious girl though.

Today we went to get her EEG done. She did wonderfully, she was very compliant. I kept her weighted blanket on her lap and also explained to the technician about her disabilities. He was awesome with her! He continued to talk to her and let her help with everything. Basically keeping her thinking she was in control of what was going on. It was an overall much better experience than I expected. She also was going on 4 hours sleep like I was/am. That helped a lot too I am sure lol. I don't know the results yet but will update when I do. During the testing there were many times where it seemed that she was not hearing him talk to her she was really zoned out, but not confused. The other times she was very much into what was going on and what he was talking about and was saying yes to everything, like she always does lol. This evening was very very hard for her dad and I. She could not handle anything, she didn't know how to tell us what she needed or wanted, she cried constantly, didn't want to be put down, but we weren't holding her the correct way. It was one of those nights that I wish people could see what happens that think it is in my head.

That brings us to my little vent. You know I don't expect everyone to understand how we feel, or to give sympathy, but I can't stand that so many people want to doubt what I am doing and want to criticize us trying to get her help. So many people want to say oh she looks just fine, I didn't know you had to look a certain way to be sick? Since when do people have to look a certain way to have mental issues? Since when is it wrong to try to get my daughter the best possible chance at a normal life that I can? I know that a lot of people think that it makes people feel better when they say that there is nothing wrong with the children, but I can tell you it doesn't make me feel any better. To me it feels as if you are degrading what I am saying, it makes me feel as if you think that I am wanting my child to have an illness, or to need to see all of these therapists. My husband tells me not to listen to what others think, but that is easier said than done. I try so hard to not see the things that I see and to tell myself that she is getting better over night, but no matter how much I tell myself, I know that doesn't make it so. This is not directed at anyone in particular, this is just what happens sooo often. I guess it goes with the pregnancy questions and comments that just get under people's skin when others don't realize they are doing it. Like some people don't like their tummies touched when they are prego but so many come up and just touch away, others don't like to hear the phone call, you haven't popped yet, for the zillionth time, but people still do it not meaning to irritate anyone. No, I am not pregnant and those things didn't bother me, but I know many people that they did lol. Sorry for the frustrations, I just needed to get this off my chest.

If there is anyone reading this that wants to comment please feel free, I don't mind and I do publish them. You never know if your comment may touch someone's heart to make them feel not alone. Aloneness sucks. I know that God is with me all the time and that is not what I mean by "alone". I am referring to going through something and feeling as if others are not having the same emotions as you are.

Thanks for reading! Once again I appreciate everyone's prayers and God Bless everyone for caring and keeping up on my Kayt.

So Kaytlin has now lost knowing what a horse is. She can no longer point one out or tell you that it is a horse when she sees it. This is so frustrating. I guess God was just giving me a break for those 3 weeks of her not losing anything. We got the full report today from her psychologist, hopefully we will get an OT out here that will come and see her. We also have our EEG tomorrow. Please keep us in your prayers.

 

God Bless all of you for thinking of us!

 

PS Please keep Garrett and his family in your prayers. He was born Jan 07 and has been diagnosed with a serious cancer.

Diagnosis

I spoke with Kaytlin's psychologist today and she has been given a provisional diagnosis of autism to be re-evaluated at the age of 3. Because children can change so much at this stage they do not want to make it permanent without knowing for sure. I am thankful for at least the provisional to be able to get her some help with SSI and the Medicaid waiver. She is also wanting to see if the occupational therapy will have more of an effect with Kaytlin's sensory disorder. It may be that if we can tackle the sensory then she would be able to learn and retain more.

 

Last night Kaytlin woke up in a screaming fit dazed and confused again. Her speech therapist was curious if her ability to retain and her success would go down once she was no longer sick, and it has. She was put on antibiotics Saturday and Monday started the journey to confusion again. I guess when children are sick they are more relaxed and able to retain more. Go figure that being sick can actually be a good thing in children with disabilities.

 

Well I guess this is all for now. For those that are keeping us in your prayers it is greatly appreciated. I think because we have known of the possibility of this diagnosis we are not shell shocked. No matter what label she has, she is always going to be my little princess with an attitude lol.

Yesterday Kayt had a few confusion episodes. After speaking with her speech therapist today we went and spoke with Kaytlin's pediatrician to find out about possible seizures. They are going to schedule an EEG and that way we can see if that is what is going on.

The episodes: Yesterday morning she was sitting at the table with me and asked for some juice, I answered saying Please, and she just stared at me blankly. Usually she will say please if we prompt her to. I did that 2x and still nothing so I said okay we can try it later, I didn't want her to get too upset about it. I went to hand her the juice and she forcefully pushed it away and then broke down crying.

The second episode occurred while her developmental therapist was here. We were in the middle of play therapy on the ground and Kaytlin just got very confused in the middle of play. She started looking around and called me Patia (the girl I babysit) and then called her therapist mommy and then started pointing at her room saying Patia. Then like nothing she snapped out of it and went back to being where we were and doing her therapy. During this session she also forgot what a cow was. She called a dog a cow and could not point out the cow in the book.

Just a quick update. Kayt has had a very rough couple of days. She isn't feeling too well at all. She has had a fever off and on today and yesterday. She is very very fussy. Being held is mostly what she wants. She is very disoriented a lot today. Will update later.

Kayt had therapy today, it went nicely. Her attention span is definitely getting shorter lol. More evidence that she is becoming that wonderful 2 yr old that I knew was hiding inside! I cannot wait to see the results of the deep pressure therapy. Her weighted lap pad isn't going over that well, she really doesn't like having blankets on period. HOWEVER I did put it on Robbie one night and he didn't think he could get up! It only weight 1 1/2lbs so it is very light. He laid there and cried instead of standing up in his crib crying, which helped him to fall back asleep faster! I wish I would have known about this oh 6 months ago when I was dying for sleep lol.

Friday afternoon turned into a 3 hour breakdown! Yes you read that right, 3 HOURS!! It sucked, she would be okay for about 2 minutes and then come back to me just losing it again. Ugh kids lol.

Saturday went great. We had the best shopping trip we have ever had with the kids! Both of them did wonderful and didn't fuss at all the whole time. It was a diff type of kids cart though, so I think that was it, they were side by side and facing forward.

Sunday went great also, she went into the preschool class with the bigger kids for about 80% of the time, the rest she had come back into the nursery with her dad and myself.

Okay she had a breakdown yesterday, last night to be more accurate. It has been a while since we had any and it has been pretty nice. I mean we have had the usual 2 yr old tantrums, but none of the breakdowns anywhere similar to the previous video. This one was quite a bit worse than the video. I had to hold her tight with her arms locked down in my arms and rock her. It worked wonderfully! She even took one arm out to wipe her nose and then put it right back in my arms to be pinned down.

Today she had her occupational therapy evaluation. She actually broke down in front of the therapist too. I learned a lot about different ways to apply deep pressure for her, which is what she is needing. Unfortunately there is no OT's that specialize in SPD to come out here and help us, but we are hoping for at least once a month at the least. The sensory issues that Kaytlin has may very well be the reason behind her delays. It was explained as her brain is trying to make sure she is okay and because it takes so much longer to process that her brain isn't able to concentrate on the other things to learn and retain them. At least we have more of a start now than before. She also told me a few ways to try to help Kayt with going out to eat and also with the noises that really bother her. I hope it works. The suggestion is to introduce her to headphones and let her listen to music so that she is concentrating on that and not the outside noises and commotion. This would be awesome if it works!