Ahh the lovelies of regression. I don't know if I had posted previously about kaytlin now thinking she has to be in her highchair to eat, and her brother that is 1 loves to sit in the big boy chair at the table. Kaytlin loved her big girl chair and hated the highchair for quite a while, and about 2 weeks ago decided she has to sit in the highchair to eat. This is fine, well she also started using food the way a 1 1/2 yr old does. My son has not started doing these things yet, and I hope he doesn't. I remember on the mommy boards about a year ago when we were all complaining about our kids throwing food, dropping it to the ground, squishing it all over, just getting to know textures and cause and effect. Welllll Kayt is back to that again. Tonight I would have to dub as the messiest in a long time. Now Robbie is messy, but that is just because he hasn't figured out utinsils yet. We had spagetti tonight and Kayt decided to use her hands, took a couple bites, then wanted to see how the food squished in between her hands and fingers, she threw it up in the air, she picked it up and dropped it, put it in her hands then shook them, it was great (note the sarcasm). Thankfully it was bath night tonight. I can no longer give her ketchup either because it is no longer a dip, which she has always done great with, it is now finger paints. She has never used finger paints so no it isn't because I introduced her to it. She sticks her finger in the ketchup and spreads it all over her face and arms and legs. She used to stick her finger in it but would put it in her mouth to eat it, not on her body. I tried to not give it to her today, but she refused to eat till I did, so I gave in because she doesn't have weight to lose, and she used it to dip a couple things than began her painting project :)

Now a little funny to add to this for those reading. Rob got up to go and start their bath and he always closes the door so that he can get it going etc without fighting the kids off. Well Kayt decided that she was going to get ready for her bath, that's right, off came the diaper. I didn't think anything of it because she always takes her diaper off then asks for help with her shirt. Next thing I know she comes out into the living room and says mommy potty so I got up and turned to go down the hall and well, there was a big ball of poop on the floor, all over Robbie's hands and feet, all over Kaytlin's hands because she was playing with her butt! It was pretty nasty.

Okay since it is 12:34 am I better get off of here. Kaytlin had yet another night terror so we are up in the living room with the lights out watching Barney.

Oh one more thing I found some Barney bedding, light switch cover, and curtains for her room! I cannot wait to get them, she will LOVE LOVE LOVE them! She is such a Barney fanatic!

Kayt had a great morning yesterday morning. She had zero accidents and pretty much was a typical 2 yr old getting into trouble and being a pain lol. It is hard to explain the difference, but there is definitely a huge and noticeable difference between bad days and typical 2 yr old days. THEN she had her nap and that was it. She woke up crying and wanting to be held and nothing more. She cried throughout the rest of the day with break downs and couldn't feel herself peeing or needing to anymore so we had to go back to the diapers. Nothing was different, I have no idea why sleep changes everything for her. It isn't like I can let it go without giving her a nap lol. She will give herself one :)

Last night she woke up with another terror, I don't know why we are getting these nightly again. That's about it for now, we were up till 1:30 this morning so she is still sleeping.

Well it is 1:22 am and Kayt has woken up crying 4x+ now. She had a great day till the evening. We didn’t do much sensory at all during therapy today. Hope tomorrow she will do good since we didn’t. I would hate to think that any therapy is causing an adverse affect on her. Makes me want to sleep in the chair so I can go in and hold her so she can calm back down when she cries. I wish she could tell me what is scaring her so bad at night that she wakes up freaked out like this. My poor baby girl.. I love her so much. Gotta go she is crying again.

Okay sorry it has been so long since I posted. Things in my life are very busy with a new night time job on top of school and the kiddos. Kaytlin does good most days. This morning was horrible and I was sooo ready for her dad to get home so I could go to work. Kaytlin got quite a bit of sensory therapy yesterday and just like all my previous posts about this, she woke up disoriented and breaking down all day long until she took her nap. She cried for no reason breaking down about every 2-5 minutes, she could not understand or follow 1-step commands, she had no clue when I was talking to her unless I actually was physically touching her at the same time… It scares me to do anymore sensory with her. I tried doing more today like I am supposed to do and it didn’t make a difference at all. Things like this makes me want to just let her be and stop all the therapy, but I know it is all trial and error till we find what she needs since all kids are different. I wish so much that she could just tell me what she needs. She was doing great with wanting to potty train and then it just went away, her ability to feel the pee or poop was gone, she no longer is able to go right when put on the toilet like she had been doing for a few weeks now. It is to the point now that she was sitting with the therapists that were here yesterday and her diaper had slid to the side so the pee went down her leg and was going on the floor and she had no clue at all that it was happening. The only reason I found out was because one of the therapists noticed that she was peeing where she was sitting. I wish I could just snap my fingers and make everything that is not right for her, fixed.

Kaytlin’s medical evaluation with a neurological psychologist is July 1^st I am going to call tomorrow to make sure that no cancellations have came in. We are supposed to be on a waiting list, but I still want them to know that I want to get her in there. From what I gather their testing goes beyond just talking to me, they actually do a lot more. I am worried that when we go it will be a good day and they will say oh she is fine. That is her therapists worry too. With Kaytlin it changes hourly sometimes, she is so up and down. When she is on it, she is really on it.. however, that on it, doesn’t stay too long and when she is off, she is really off. The bad thing is that I hope she is “off” when they see her so that we can get her the help for that. We know where she can get to because of how well she does when things are computing in her brain, and that is where I would love her to be able to be all the time, or 90% of the time you know. Okay I am going to stop for now, I will update when I can.

Still praying for Garrett! Hugs to you Katie!

Last night SUCKED! Kayt woke up 3+ times screaming! It seems like whenever she gets her sensory she sleeps bad and just has a bad few days. Today however has gone great so far. She decided she wanted to potty train. I changed her diaper last night around 1am and at 9am it was still dry after being up for an hour. She told me she had to potty so I took her and she went. She is wearing big girl panties right now. I am trying to PT her brother at the same time! Wouldn’t that be great! We have started a sensory diet with her and are hoping that this will help a lot. We are currently working on the oral sensory for her snack with sour patch kids. She loves them! Here’s to today!!

Great news! Well maybe not to everyone, but this is huge for Kaytlin lol. Today she came to me crying and I knew what happened but I wanted her to tell me what happened. She had like 3 fingers in her mouth (which she does a lot lately for some reason), and was balling. I told her she had to take her fingers out of her mouth for me to understand what happened. She took her fingers out and kept crying. I then told her that she needed to tell me what happened. She said, “bubby see tv”, I said oh what happened next? She said, “Patia hit me”. That is huge for her! She actually told me what happened!!!! Now this may not stick, but I don’t care because she was finally able to tell me what happened!!! I was soooo excited I had to hurry and call Rob to tell him what happened because this is huge for her. BTW yes I did take care of the hitting situation (she actually pushed her lol), before I called Rob but I couldn’t wait to share the exciting news with him.
Kaytlin has OT today, I hope it goes wonderfully! This will be her first appt since the eval and we know that the sensory is one of her biggest set backs. She also has gym today at 10 so I gotta go!!! TTYL

Oh my goodness. Yesterday was definitely a rough one. It seems that Kaytlin getting her sensory input the day before made for a very rough day yesterday, this has happened every time she gets a lot of input on a prior day. She cried probably 80% of the day. She was confused, upset, and just couldn't seem to find a comfortable spot. Today has started out a little better, but still pretty emotional today. I know that she isn't doing a lot of the things to get under my skin but oh man the crying is enough to drive a sane woman insane lol. Usually towards the evening she starts getting better but last night she wouldn't go to her dad, which she usually will, and wouldn't go eat or anything. She only wanted me to hold her tight in my arms. After they got a bath she started crying again and went and curled up in her bed. She cried herself to sleep. I hope that once we start the OT next week that things will begin to look up.

Kayt had developmental therapy today. She showed a lot of stiffness and rigidity, something she has never shown before. She has also started lining up things besides blocks and books, she lined up some bottles that her therapist had brought right after they were brought out before we had even realized what she was doing. She was showing many signs of defiance for many different things, she is usually open to doing the therapy but today was a bit different than before. It scares me when I see new things that point towards autism, and add yet another trait of the spectrum into her diagnosis. I am ready to go see the psychologist that our pediatrician is going to recommend, I am ready to see what they think about the traits just now appearing and what the results of the blood tests etc show. I still hold up hope that everything will disappear one day and she will be just your avg toddler. No matter what I love her to pieces and I always will. I will never blame God for this I know that He gave me my special girl for a reason.

 

Again thank you all for your prayers and warm thoughts.

So, I went through a list of the signs of autism that the docs look at. I got it from the mayoclinic web site. Kaytlin meets 9/18 of these. I believe they have to meet 12 of them to be considered autistic, which is why she would be considered PDD-NOS and not autistic

Social skills

• Fails to respond to his or her name - This one she only does sometimes.
  
• Has poor eye contact
  
• Appears not to hear you at times
  
• Resists cuddling and holding
  
• Appears unaware of others' feelings
  
• Seems to prefer playing alone — retreats into his or her "own world" - She has started doing this now, she takes her books or whatever to another place where no one is and lines them up
  

Language

• Starts talking later than other children
  
• Loses previously acquired ability to say words or sentences
  
• Does not make eye contact when making requests
  
• Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  
• Can't start a conversation or keep one going
  
• May repeat words or phrases verbatim, but doesn't understand how to use them
  

Behavior

• Performs repetitive movements, such as rocking, spinning or hand-flapping
  
• Develops specific routines or rituals
  
• Becomes disturbed at the slightest change in routines or rituals
  
• Moves constantly - Unless she is sick
  
• May be fascinated by parts of an object, such as the spinning wheels of a toy car
  
• May be unusually sensitive to light, sound and touch and yet oblivious to pain
  

Tonight we were at church and Kaytlin was where the other kids were playing. I guess the boys were too loud and it scared her to the point of hysterics. The girl that was watching the kiddos brought Kayt to me and told me the boys being loud scared her and it took quite a while for Kayt just to stop breathing in really hard, you know like you do when you have been crying really hard, or a baby has and they do those really deep breaths real fast.. Loud kids never scared her before. She would just watch them and stay quiet, now it petrified her. I don't understand why my poor little girl is developing these things as she gets older.. Usually from what I have learned, this stuff starts developing when they are a baby or around 18 months. I wonder if it is because Kaytlin's brain function is 6 months or so behind that it is showing these things late also? You know sometimes it is hard to deal with this, to know what she is going through, and the emotions that she is feeling. I just want to take that fear and pain away from her, and I can't because new things are starting to scare her, so I can't put her in a bubble and prevent everything you know. Just keep her in your prayers guys. I know God is watching over her.

Also don't forget to pray for Garrett and his mommy Katie. I mentioned him previously. He is going through Chemo right now and your prayers are needed for him also. THANKS!

 

I spoke with Kaytlin's pediatrician today. We actually went because Robbie has an ear infection, but took the opportunity to talk with her about Kaytlin also. She thinks that Kaytlin will benefit greatly from Hippo therapy (hoarse back riding therapy). She is going to have her staff look into getting that for her. She also is going to have a neurological psychological evaluation done, so that we can get an actual diagnosis of whatever is going on with Kayt. Her pediatrician is going to give her a diagnosis of DD, Developmental disability, because her delay is more than obvious now. This will allow us to get her on the Medicaid waiver waiting list. She thinks that Kayt is PDD-NOS, but because she does not deal with Autism as her specialty she wants to send her to someone who only concentrates on that. Today was the first day that her ped really noticed things besides the delay. I could see it on her face, usually she will smile and say well most 2 yr olds do that (with behavior) but she didn't do that today at all. That is about it for now; I just wanted to let everyone know what was going on and what the pediatrician said today.

 

God Bless you all and thank you for your support and prayers.