Baby of The House

Twink is the baby of the house when it comes down to the ages of all of the children. I've been thinking about something for now for awhile. When we decided to adopt last time we knew we were going to go older and in between Spitfire and Dash. I've always felt that Twink needed to be the "baby" of the house.

It was my thought that she would not do well with someone younger than her. When in fact she actually plays better with a child that is a year or two younger than her. See I believe it is more my own fear that plays into that mind set.

The thought of Twink having a younger sibling makes me quite sad. The thought of that sibling one day surpassing her in something just does not give me warm cozies. We recently had a little tike (almost 1.9 yr old) over at our house and I could not believe how well she was talking! Made my stomach kind of ache. Then I did a little dance for how far our girl has actually come. My niece Special K who will be 1 yr next month is pooping in the potty! Ummm, I can't for the life of me get Twink to poop in the potty. She is fully pee trained but no poops. I actually think she is withholding.

When I get frustrated people feel the need to remind me that Twink either had a stroke or has cerebral palsy. REALLY!! I forgot that tiny tidbit, thanks for reminding me. It's pretty hard not to compare your 4 1/2 yr old to a younger child who is far exceeding what your child is doing. Most days I'm fine but there are days that are harder than some.

Twink just has her own rhythm that she moves to! :)

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!

Inspiration

There has not been much talk about Twink and her progress or lack of progress in sometime on the blog. Basically there was really not much to blog about. She had been holding steady at the level she was at until recently.


If you've been following Twinks story for sometime hang in here with me for a few minutes as I recap a bit. During the summer Twink transitioned out of EI (Early Intervention) and into our local school district. They have been wonderful so far. Twink started an inclusion preschool this past summer. During that time it was more of a transition time. We really did not see much growth and I was frustrated. In September she started back to the same school, different class, and few of the same therapists. She receives ST 4x a week, OT 3x a week and PT 3x a week. We are now seeing amazing results!

Twink receiving speech therapy 4x a week is definitely helping. She is really starting to talk! Whenever we have to do something that requires us to hold her (brush her teeth, wash her face) she will tell us to "let go". This does not happen once, she will tell us this over and over until we let her go. LOL She tells us when she wants to eat and when she is hungry. She says her name all . the. time. She tattles on SPITFIRE by name and tells her to "go". ;) On Halloween I gave her a piece of candy and she walked over to Daddy and said "I got candy". I asked him if he had heard what I heard and he said yes. I often wonder if I hear words coming from her that are just something I want to hear. So if someone else is around I'll often double check if they heard the same thing. They always hear the same word or phrase. We asked Twink to repeat the sentence and she came out with jumbled words. I did give her another package of smarties and she repeated the sentence "I got candy"! I must say it brought tears to my eyes. There are times when she just busts out with a new word or a sentence. She amazes us.

School asked me to stop in yesterday as her new brace for her arm came in and they wanted to show me how to put it on. Unfortunately the lady that brought the brace in came earlier than expected but luckily it is much like her old one so I already know how to place it on her. When I arrived at school Twink was working at a table with her brace on. I was afraid she would not be able to use her right hand as well as she did previously. The brace is to help keep her hand open and in the correct position. We do not want her hand to contract in a closed position. Twink is still able to take the tops off makers with this brace on. She holds the maker in her right hand (affected) and will pull the top off with her left hand. She never even used to use the right hand. Oh and did I tell you Twink was writing her name with those markers?!?! She can't make the A yet but she can make the LI. Short names people, short names! LOL :) She loves to do anything with arts and crafts.

I was also able to talk with her PT. She would like me to talk with our developmental doctor next month but she thinks it would be a good idea for Twink to be fitted with a brace for her right leg. I've questioned her leg for many months (over a year) but they always wanted to hold off. Actually the dev. doc did have a PT in her office that wanted to see how Twink was doing at her next appointment way back when but she ended up quitting. We will see how things go next month after our visit with her doctor.

To think about all Twink has been through and all she still has to go through is mind boggling. We are her family and we will do everything humanly possible to help her through whatever struggles she faces. She is our inspiration.

Our daughter WILL talk clearly one day! The odds were against her and she is beating them everyday!

Chattering Away

I was downstairs this past Sunday and Jewel came down told me Twink was upstairs "talking" to Dad. When I went upstairs this is what I found! ;) How sweet is she?

Playing Catch Up

Wow, this month has flew by! So in my last post I asked for scissors, I found some. LOL Let me add that Twink will begin a second round of casting on January 6th. I ended up cutting off Twink's cast due to the fact that her fingers were sticking out farther than they should and she was able to use them. She started to use her left hand only and was getting upset when she could not use the hand as a whole. The casting has done wonders in more ways than one. Twink is now playing center based instead of turning to her left to do everything. She is using her right hand a bit more for some things but definitely more than before the casting. Best of all it has helped her speech. Wondering how? Well this is how it was explained to me. She was forced to use the left side of her brain and that is where her speech center is. So not only is she benefiting from the casting for her arm but it has propelled her speech. She has started to babble MUCH more and she has found the words mommom and daddy again. Twink's speech therapist is very encouraged as are we. As for the neurosurgeon who said Twink would never talk, poopoo on him! She does have to work on forming some of her words but it will come. She is also doing VERY well with sign language and we will continue to work with her on that.

We saw a new neurologist this afternoon. For the first time in a year we have found out the extent of Twink's damage from her stroke. The doctor we saw today was great and actually took time to explain things. I can't believe that the neurosurgeon and the neurologist we saw did not explain anything to us. When he came in the room he told us that he was shocked that Twink looked so well after reading her chart. He asked what our concerns were and I had told him about the seizures. He looked at the CD I had of all the scans of Twink's MRI's and her MRA. He then started to explain that Twink's left temporal lobe is completely damaged. That was the first time we had heard this. I believe he also said a portion of her cerebellum but I was still trying to wrap my brain around what I had just heard.

We are starting her on anti-seizure medication. It is needed and will always be needed. The damage is so great and she will always be at risk for seizures. I feel good about the medication selection he made. I know people think she is too little to start medication at an early stage in her life but it really is a matter of life or death. I've already had to do rescue breathing for her once I'd prefer to not do it again.

Overall we are extremely blessed. The doctor's very pleased at how well Twink is doing. He said that he expected her to do very well. Only God can work the wonders in our daughter like He has. I stand in awe of all that she has overcome. I thank God for blessing our lives with her sweet and not so sweet little self.

Thank you for listening and all of your support!

Fun Days Ahead! (NOT)

We finally have a date set for Twink's botox injections. This will help relax the muscles that are tight in her right arm and right thumb. It is set for November 3rd and then on the 14th we are going to cast her unaffected arm or lack of a better term "good" arm. (I really don't like using good arm bad arm) This is in hopes to have Twink start using her right arm and hand more. She has actually started to use the arm more but not the hand. She is going to be very frustrated and very angry. If you could all keep us in your thoughts and prayers that would be great.

I was also able to schedule an appointment with the new neurologist. That visit won't happen until the end of December. Man, that seems so far away. I'm praying that everything goes smooth until we see them. It sounds like a very busy practice that attracts three different states! (YIKES) I know our state is in desperate need of good neurologists right now.

Twink's evaluation for the next step of EI is coming up. She will actually move out of EI and into the school system. That eval is next week with a CP group. I am excited about that because I am in hopes that maybe they can answer a few questions that I have. If they have an opening in one of the preschools then she will be placed in one of the five schools they have. It will be five days a week and five hours a day. She will receive therapy EVERYDAY!! This is something Twink is in need of. Her speech right now for an almost three year old is at 9-12 months. She is making improvements, slowly. Sigh

My next area of concern is does she fit in? I know she is a bit more *special* than some but let me tell you, she knows what your talking about. There are times she could careless what is going on around her and other times she def. wants in on the actions. She is frustrated when she can not get her point across or tell you what is going on. I've noticed we are not asked out on play dates which saddens me. Is it me or is it her or both. I fear things will only get worse as she gets older. I pray that this is just me being silly but it is a concern. I have an opportunity to talk to her teacher on Friday and will see how things are going in the class room. I am starting to catch a glimpse of what our future looks like with people on the outside world.

I want a bubble!

No need to respond to the last paragraph, it's more for me to get out my thoughts. Just an FYI, I am thinking of going private on the blog. If you'd like to continue reading please send me an e-mail so I have it in case I do.

Echo Tomorrow!

Twink goes in tomorrow for her echo cardiogram! It should prove to be interesting due to the fact that she can't stand doctors or to have her shirt off! I'm really not sure how they are going to get an image, I hope they have some tricks. If you could say a prayer for us i would be forever grateful! By the way, this test is one to rule out the cause of the stroke.

We are looking at getting her some extra help for the sensory issues she seems to have. We are having a difficult time when it comes to getting her dressed, bathed, hair and teethed brushed, and diapers changed. All these things we need to do. She completely melts down when we have to do any one of these items. It so hard for me because she really is almost stronger than me since my surgery. If any of you have been there done that and have any suggestions please e-mail me or post in the comments.

Praying we have no surprises tomorrow!

Thankful Thursday!

Well we have a ton to be thankful for here at our house! We saw Dr. Scott at Children's Hospital Boston and he was so wonderful! Twink does not have an arachnoid cyst but does have cystic pockets where the stroke damaged her brain! There will be no surgeries for her. He confirmed that she did indeed have a stroke. She does have a few cysts due to the stroke but it is nothing to worry about. The damage is not pressing on her brain which is good. If it had then they would do some kind of surgery. All her arteries look good from what he could see. The MRA wasn't a complete study so he was speaking for what he saw. He did say he could see why China thought it was an arachnoid cyst. The CT scan shows an arachnoid cyst because it was a lower level of a scan. The MRI shows a lot more and confirms a stroke. China only did the CT scan so that is why we had an arachnoid cyst diagnosis. Dr. Scott did say she should do very well with her therapies. She has come along way and he said that was very promising!

The girls did great going to Boston except the last 1/2 hr. As you can see from the pictures above they were not very happy towards the end of the trip going there. They slept great and did wonderful on the way home! Hopefully this will be the last time we have to go to Boston! Thanks for all your support and prayers!

Prayer Request

Well the day has finally come! We leave for Boston tomorrow and I can't wait! Twink's appointment is 10:30 on Wednesday and she will be seeing the head of pediatric neurosurgeon team. Praying we get the information we've waited so long for. For some reason Twink has had a rough two nights of going to bed and woke in the night for the first time in a long time. The only thing we did different was go to church on Sunday. The kids have been sick so much that it's probably been three or four weeks since Twink has gone. I'm not sure if it's too overwhelming for her or what. We may have her stay home this coming weekend and see what happens. Only time will tell. Please keep us in your prayers the next few days. Here are some specific requests.

~ That Twink does well with the hotel and change of environment.
~ That the doctors are friendly, knowledgeable, and informative.
~ That we have no more medical surprises.
~ That we have a safe trip.
~ That Jewel and Dash do well without us. (we're bringing Spitfire with us)

Thanks in advance for all your prayers! To all of you leaving for China, we are so excited for you! Know that you will be in our prayers and I can't wait to see your new children! Update will come either Wednesday or Thursday.

More Testing

Thursday Twink will have a sedated MRA of her brain and spinal cord. I sure wish they could have done this with her MRI (they could have but we hadn't seen the neurosurgeon yet). It is just like a MRI but it will give pictures of her arteries and veins instead of bones. This test is to make sure the stroke she had in utero or as an infant will not happen again. I'm praying we will be able to take the results with us to Boston but I'm not sure I'll be able to get them that fast. I may have to do some last minute running around in order to get the films and the records.

On April 3rd she will go to the cardiologist for an echo cardiogram and that will check her heart to see how it is functioning. This also is to rule out another stroke. They will also go over the results of the MRA if Boston is unable to for any reason. I'm ready for all the tests to be over with and to have some final answers! I keep think we are getting close and then something else pops up. Please pray that Twink will have an easy time with the anesthesia and that nothing new shows up on these scans. I can handle just about anything but if I have to live in fear of her having another stroke I might go crazy! I think the seizure fear is enough for me, thank you very much!

The thought that April is almost here is making me want to go outside! Maybe it is the sunshine today. Boy did that sun fool me! I walk outside expecting it to feel warmer than 30! You'd think with sun shining like that it would feel much warmer - NOT! Shouldn't be much longer though! Oh how I can't wait!