Seizures or Tic?

Tell me what you all think of these video's of Bebo. I have brought it up to our family doctor but he seemed to think it was behavioral, I'm not so sure. I would think that after 6 months these behaviors would slow down and they are not.

**Let me add that the head movement is not in anyway related to what he is watching. Remember we have watched him do this for the last 6 months. Also in the bottom video the leg movement is involuntary.He does this when he is relaxing, watching TV and when he is trying to fall asleep at night. He does do it for a bit when he firsts falls asleep as well.**

Just a side note, Twink is letting me know that she tooted and that she has a stinking butt in the second video. :)

Looking Fear In The Eyes

Have you ever looked into an animal or a persons eyes and seen fear? I don't mean just any fear, I mean shear terror? I have and I see it more than I would like.

Twink has an extreme fear of doctors, dentists, etc. She is fine walking into the office but as soon as it is time to head back for her to be weighed and measured it is a total melt down. This is where her fear starts and my lack of muscles come into play. As long as it is a routine check things are pretty good. I call pretty good screaming, crying, and kicking. If the visit is one where she needs to be held for something then it is a different story.

Twink does not like to be restrained. It does not matter if I do it or someone else does. For the record, I prefer to be the one to do as I can be the one who looks into her eyes and talks to her. She has had so many tests where we have had to hold her. Numerous sedations, Castings, Botox, EKG, Echo, X-ray's, Lab Work but the worst two have been the EEG's and her eye exams. Both have to deal with her super sensitive head which has major sensory issues compounded with us holding her down. She goes into this fight or flight response. The only thing is she does not do the OR it's both!

Holding her for these procedures is nothing short of a miracle. The physical strength this child demonstrates during these times is mind boggling. It takes every ounce of energy and all my strength to hold her. Most times that is not enough.

Looking into her eyes during those moments breaks my heart. She looks like a scared trapped animal looking for a way out. Many times I have to look away when she is like that. You see her fear, her terror in her eyes. They are scanning the room searching for a way out. Searching for a reason as to why this treatment is being done. Soaking in every face that is doing this to her. Screaming at the top of her lungs that it hurts and she does not want it. Shaking her head back and forth. Her face soaked with tears and snot streaming down her face. It's all I can do not to cry with her. I know what they are doing is only helping her but times like those it's hard. It's hard to see her react like that.

All is better within a few minutes of each procedure with a little love and some holding. Oh how we dread those appointments though.

Testing Again

Wondering what we are testing for? That would be autism. Twinks developmental doctor whom I love with all my heart feels the need to test this child - again. Oh wait, some of you may not know that we have already done this test and Twink passed it. I was told at her last appointment that Twink passed but her test results were border line.

Her thinking for repeating the test is Twinks lack of speech, social interaction with peers and lack of pretend play. Twink also does what the doctor calls echolalia. Echolalia is repeating a mimicked phrase over and over. Or singing Twinkle Twinkle over and over which has a calming affect on her but drives us a little crazy at times! ;)

We all know the reason for the lack of speech. If any one of us had a stroke today and it damaged the entire left side of our brain we would have to work our tails off to talk again. Twink is no different. Believe me when I say she is working very hard on her speech. She has come a long way in two years. She has a long road ahead of her but she'll get there. OK, so she had the stroke, has some brain cysts, seizures and apraxia. This is the very doctor who told me about apraxia! LOL I see a ton of reasons stated for Twink not to be talking.

As far as the social interaction she is great with adults but with other children she seems to be a bit more shy. It totally depends on the situation though. I've been told recently by her teacher that she is doing great interacting with the other kids at school. She is sharing and maybe some of you remember Twinks award at the beginning of the school year. She comforts others when they are sad, gives hugs and kisses, engages you in "conversations" and demands attention! LOL

The whole pretend play has made me stop and think. No Twink does not play with baby dolls or barbies. She does not play with the doll house like she "should" be. I started to wonder what Twink DID do for pretend play. Twink LOVES to play with toys cars (trucks) and will make car noises. She pretends she is a puppy. She likes to use her kitchen set with Spitfire. She LOVES to dress up. To be perfectly honest though, we've been so busy trying to help her use both hands and work on sensory issues we didn't think about pretend play. We do arts and crafts, build blocks (her new love), play with balls, fun sensory stuff, etc. Had I known that pretend play would be so important maybe I would have focused more on that.

I'm really to the point where if a label gives her more services for speech then by all means do the test. I almost laughed when the doctor said she wanted to repeat the test. She's telling me that Twink makes great eye contact, great engagement, and is playful. She knows that Twink had the stroke and that could be the reason for the speech delay. She was just not sure about the pretend play and the echolalia. She'd like to give it three months and see how she is doing and then schedule the test *if* things have not improved. She was "not ready to say she was autistic yet".

At what point will she take the test for what it's worth? If Twink does end up taking the test and passes, are we going to be asked to repeat the test again next year? Maybe she wanted to dx. her with autism but saw that same look she saw when she mentioned CP the very first time. I just never thought we'd be repeating this test again. Maybe I'm in denial, parents are experts when it comes to that. All I know is that we'll do whatever it takes to help our beautiful little girl become everything God has planned for her!

School Christmas Party

Twink had her Christmas party at school yesterday and she had so much fun. She was not afraid of Santa and in fact when we entered the room she made a bee line to be front and center. The first picture she was so excited she was jumping up in down in front of him. She turned around to give everyone a big smile as all the kids were trying to find seats. In the second picture she was venturing even closer to him.

The school has sponsers that buy the children gifts every year for Christmas. Twinks teacher wrote us a note and asked us if it would be OK for Santa to bring her a toy fire truck. She explained that there was one in the classroom that Twink has claimed as her own. When another child tries to play with it Lia gets rather upset. I told her that she would like any truck.

This has now become Lia's new favorite obsession! Who knew Santa would get it right. Darn him for ALWAYS getting credit for the best gifts. Oh and have I told you I'm ready to send it back to the North Pole?!?! Just kidding...sort of. Seems Spitfire knows that and Twink totally goes nuts when someone touches it so there have been mega  a few tears over this truck that we've had just barely 24 hours now. If she could have, it would have been tucked away in her bed with her last night! LOL

Be sure to check out my Wordless Wednesday tomorrow, your in for some serious cuteness!

Wordless Wednesday

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Omega 3 6 9

I would like to thank all of you for your wonderful comments and suggestions. You've been a great deal of help. I must admit, just writing all of that out helped immensely.

Things here the last week have been wonderful! Twink started the omegas a week ago this past Saturday and we have seen such a HUGE difference. We started them in hopes for her speech but we have received an added bonus. There are many benefits to taking omegas but the one Twink is receiving the most is a mood stabilization! We have had maybe a handful of tantrums this WEEK! That's right, I said week! People, we would have more than a handful a day!! She is a happy child. Playing, laughing and smiling all the time. Twink was able to go to Dash's baseball game on Saturday and we did not have one problem with her! :) We are also taking some of the suggestions and applying them where needed.

I'm not one to promote ANYTHING but I am a firm believer in omegas now! I'm not really sure my husband was at first but he's sold. We are actually giving them a try on our almost 5 yr old. If you'd like to read about all the benefits omegas have you can read them here. ** I am not promoting what they are selling on their site as I do not know anything about their product nor have we ever used it. We use Nordic Naturals.** If you have a child that tantrums and try it let me know how it works for your child.

IMPORTANT-As always check with your childs doctor before starting them on any supplements. There are certain health conditions that omegas could have adverse reactions to like diabetes and blood clotting disorders. Be safe and double check.
Thanks again for your support! It means the world to us!

This Momma Needs Help!

I'm not really sure where to begin. As you can see from the video Twinks melt downs are what is on my (our) mind. I really thought that after a year and half that they would improve. We are dealing with these numerous times a day and to be honest they are about to send me over the deep end. I am a mess. I feel like I am on pins and needless and I myself am ready to cry at the drop of a hat. If Twink doesn't get her way it sets her off. If she doesn't like something the crying can go on forever!
I just don't know what to do. I don't know if it sensory related, behavioral issues due to the stroke, adoption related or typical toddler behavior. We are a waiting to hear when her appointment is for her sensory evaluation, shouldn't be too much longer. Her developmental doctor did tell us that Twink is a bit extreme with her emotions. More so than most the patients she sees. She mentioned that if her behavior were to continue into the school years that she may need a small dose of medication. The medication she mentioned I know very well as I used it at the hospital I worked at. Bob and I have started her on some Omega's so hopefully that will actually help with her behavior as well as her speech. I have talked with The Count about seeking out an attachment therapist.
I am to the point where I do not look forward to bringing her out in public. One wrong move and the whole event is shot. It usually stems from her not having her way. If we ask her to walk she will refuse and plop down and start screaming. She likes to do this when she comes home from school or if we ask her to hold hands. She is upset really easy. I would call her SUPER sensitive. If she is upset and The Count or I hold her, it only makes things worse. She cries harder and longer which makes me tense. If I give her a quick hug and kiss, let her cry, walk a way and ignore her it does not last as long. Is this wrong though?
We love Twink with all our heart and would not trade any of this for the world. As frustrated as this is she truly brings a ton of JOY to our family. All we want to do is help her and I'm not sure what to do. We have been helping her physically but what about the emotional aspect? Any suggestions would be helpful.