Speech Progress!

It's been awhile since I've blogged about anything especially about the progress with the children. I'll start with Twink for today. She has made some amazing improvement in the last few months that has shocked everyone. When were were told she would never talk we didn't want to believe it. I knew it was a possibility and the longer she struggled the more I started to believe maybe it was true. I'm not sure I'm going to say this how I actually feel it but I hope it comes out right. I'm not good with words at times.

One always wants what is best for their child and will expect them to try to do their best. That is all we want Twink to do. If her best was to make sounds and point, then so be it. We were still going to push her with speech therapy but she was always trying. That is the only thing we can ask of any of our children, their best. The hope was there that she would talk but reality was always knocking at my door. You could feel the frustration level from her when she could not get her point across. I guess what I'm trying to say is don't expect more from your child when they physically can't, meet them where they are.

Today it is different. Our girl can talk and 90% of the time we can understand what she is saying. Not only that she is using ASL with her brother. She still requires speech therapy four times a week but we have come so far!

Never Underestimate

Never underestimate someone/something based on what is on paper! So many people let their fear stand in the way of some really beautiful moments. They depend on experts to know what is best and to know it ALL!

Here is our daughter who we were told would NEVER speak! That very doctor that told us she would never talk made a statement (in a condescending tone) that spoke volumes to his personality. This is his statement to my husband and I, "And you adopted her knowing all of this?" I really wanted to scream at him what makes her less desirable than any other child? We wanted a child and she needed a family. She has medical needs that take lots of time and patience. We prayed and knew this was our child! He obviously only saw her as a medical case not a child who was loved dearly already.

Twink has made HUGE gains in a years time (she's been home now 32 months). Actually it has been the last 3-6 months where she has blossomed in her vocabulary.  In another year, I plan on sending a video to that doctor to show him just how well she is talking. I think they way he treated us was wrong and I plan on telling him.

Oh the first statement she makes is she wants to see the picture and then she wants to see *** (herself).

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.

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! :)

How Far We've Come

**Video has been added at the end of the post! :) Thanks Carla L.!!

Two years ago we received word on the extent of Twinks "disability". It was shocking to say the least. We did not expect to hear cerebral palsy and we did not expect to hear that she would never be able to talk. We we not prepared for the possibility of Autism as well. We simply thought she had a brain cyst.

If you look at the first three pictures below you can see what we dealt with pretty much on a daily basis. A truly frustrated, withdrawn, grief stricken child. There were many happy times but Twink had these tantrums below multiple times a day. Remember this post? I can happily say Twink does not do this anymore. Well maybe on a much lower level. The blank look I was told was Autism. She did display a few signs of it. We did have her tested and she narrowly passed the test from what I was told just a couple of months ago. I was am convinced it was a mixture of her brain injury and post-institutional autism. Her developmental doctor wanted to retest her in the coming months. Which leads me to this post!

We saw Twinks developmental doctor last week and we blew her out of the water with how far she has come. Twinks speech is coming at us faster than we can keep up. Some of it is still unclear and she still babbles from time to time but this child will tell you what is on her mind! She has new phrases that she has picked up, let me share them with you.

- Noooooo
- Go away
- Wanna go in the car/outside/play
- Kids bothering me
- Leave me alone
- We going to church
- I go potty
- It hurts (she says this for EVERYTHING!!)
- She names everyone in the house by name
- Says thank-you until you say your welcome

There are so many more! Some really funny ones too but I just can not think of them off the top of my head. Everyone has noticed how much more she is talking. Her doctor did not even mention testing her again! Twink visits this doctor every three months so you can get a good idea how much she has progressed in three short months. In fact this whole school year has been amazing progress for her.

Our girl has over come so much! Remember back to when the doctor told us she would never talk was gut wrenching. I'd say it was the worst day of our life as parents but many of you know we've had worse days than that! It was a hard day though. To think that you will never hear your sweet childs voice is a hard pill to swallow. That very same night the Lord gave me a glimer of hope to hold onto. Twink said Mama that night! That very same night the doctor told me she would never talk.

After her very first seizure Twink lost every word that she gained as well as every new sound she made. Same thing happened with her second seizure to a little bit less degree. With every seizure I live with a little fear that she will be set back in her speech. I'd like to say that I'd be OK with it if she lost her speech capability but I've had a small glimpse at what she is capably of doing. I don't want to go backwards. She has fought so hard to get to where she is and we will keep fighting this fight with her. She is my inspiration!

Twink is the reason why we were open to a child with a hearing disability. She opened our eyes that communication comes in forms other than verbal. So while we fight to help her become verbal we fight another fight to help our son become fluent in American Sign Language. Who by the way started school yesterday! I'll post tomorrow about his first couple of days.

To those parents who have children with speech delay don't give up hope. It's a long road but as long as your willing to press on then you will see progress. Baby steps all the way! :)

I had a video to put up but I see that blogger no longer has the capability to place video's on your blog. What happened? Anyone know how I can put a video on?

The picture below is Twink dancing with her shadow!

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month. I am passionate about cerebral palsy and any kind of awareness I can bring to the disorder. I want to teach people that there are MANY levels of CP.

I'm asking that you please post the following You Tube video on your blog to help promote Cerebral Palsy. In doing so you will receive an entry into a drawing for a Scarlet Threads Apron of your choice! If you point them in the direction of my blog you will receive two entries! :) If you just let me know that I've educated you I'll give you an entry as well! :) I will draw the winner on March 31st and post who the lucky person is!

There are many children on the China Waiting Children Shared List with mild cerebral palsy. Many just need a loving home with a family to meet their full potential. Our daughter has mild cp and she has blessed the pants right off us! If you have any questions please feel free to ask and I'll try to answer to the best of my ability.

Resources for Cerebral Palsy
Reaching for the Stars
UCP- United Cerebral Palsy
CHASA - Children's Hemiplegia and Stroke Association
Adopting Children with Cerebral Palsy Yahoo Group

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!

Snow!!

We finally have snow! I for one could do without it. It is bitterly cold here and there is no end in when the snow is suppose to stop. It is not coming down heavy but enough to make me crazy! LOL We are suppose to have some major wind chill here in the next few days so I'm sure there could be some school closings.

Twink went and saw her developmental doctor last week. We touched on quite a few topics. I'll probably break them down into a few posts. She is right on target for many four year old preschool activities. Twink can write the * and the * in her name as well as point to each letter when asked. Still working on writing the rest. Twink is now drawing triangles, circles, rectangles, and squares when asked to. She also knows hearts and stars. Did I ever tell you she is obsessed with stars? She can point one out that is a mile away or as tiny as a piece of rice! :) She can draw a stick person with eyes, nose, a mouth that smiles or frowns, hair, and legs with feet. Her person looks a lot like Spitfire's stick person. She draws a house that has a roof and a door with a knob. :) She used to only sing Twinkle Twinkle, we are now starting to hear ABC's!! You don't know how happy this makes us! LOL Twinkle Twinkle was getting really old!

We are really starting to hear more words! The only person she calls by name is my FIL and she calls him Papa. Well that ended this week as I was working with her and she started calling me Momma! :) It is sweet music to my ears. School states that she is really coming along in getting her point across in getting her needs met. She has become more verbal there as well. I think we understand her better at home but that should be the case.

School did state that she is having a hard time staying focused. That does not surprise us. Children with CP are at greater risk for ADD/ADHD. We all feel there is no need to medicate at this time but know that she will probably need it at some point. We need to find some therapy to help strengthen her core muscles. She gets tired easy from sitting up and tends to lean on people or lay down. We will look into therapeutic horse back riding this spring. We have also decided against cast her left arm (good arm). It frustrates her but does give her a boost in her speech. With Evan coming home and the sign language starting, we just didn't think it would be a good idea. We are however going to do another round of botox in her affected arm and in the thumb area. This helps relax her arm so much that she actually uses it more.

I'll catch you up on the rest of the appointment later. I know it may seem I'm bragging a bit but she has come a long way! She is doing great! :)

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!

Referral Anniversary

Two years ago we received our referral phone call. Although it was some what not what we expected Twink is more than we could have ever hoped for. She has brought such joy into our family and we thank God for her everyday. For without our faith we would not have accepted her referral and would have missed out on the most beautiful, smart, determined, spunky, strong, funny, and loving child we have ever met!

We are so thankful Twink is part of our family! We love you Twink!! :)

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?

Interesting SN Find

I'd like to share a few things with all of you. I was browsing the 350 childrens shared files on the WC list the other day and a few things caught my eye. First of all most of you know how dear children with cerebral palsy are to me. So you can imagine how sad I was to see quite a few children with CP on the list. To give you an exact number it was 61 which turns out to be 17.4% of the list. Part of the reason I blog so openly about Lia is to educate more about CP in hopes that more children will find homes.

One other SN jumped out to me. Of the 350 children, 80 or 22.9% (almost a quarter!!!)were children with vision or eye problems. Now I must admit I do not know much about eyes. What I would like to do is bring more awareness to this special need!! If you have a child with vision problems or an eye condition please post your blog in my Mr. Linky for other potential parents to browse . I would also like to suggest you post your story to No Hands But Ours as this is a great resource for families who are thinking of adopting a child with special needs. (Also post your children with CP in the Mr. Linky)

Total # of children - 350
Children with Eye problems - 80 - 22.9%

Children with CP - 61 - 17.4%

Children with Cleft Lip/Palate - 36 - 10.3%

Children with Spina Bifida - 32 - 9.1%

Children with Heart Conditions - 30 - 8.6%

Children with Other Special needs - 111 - 31.7%

Of the 350 children available - 192 are between the ages of 6-13

These numbers do not even include any of the agency specific WC lists. Help me bring awareness to these special needs. If anyone has CP on their medical check list our agency has two little girls, one who is 6yr old and one who is 2 yr old. Both are sweet as can be! There is also a little girl who is 10.5 yr old with congenital nystagmus of both eyes. I know there are families out there for these girls. You can find my e-mail address on my sidebar if you need to contact me. I also moderate my comments so if you need to ask me something and do not want it posted please just let me know.

Looking Back

Part of our reason for blogging is so that we can journal about what is going on in each of our childrens lives. It's a bit different when we blog about Twink. We are actually able to look back and see how far she has come. During the last year Twink has had many therapies and doctors appointments. There are times when we feel like she has made very little progress. Thankfully for this blog we are able to go back and actually see, it is amazing.


As I was reading your comments about Twinks casting, Jeanette's reminded me of something. Twink HAS made some huge improvements with the use of her right hand. I looked back at some of the video we had taken when she had her very first cast placed. We are amazed by this child. With the first cast she could barely grasp and pick things up. Add to the fact she could not raise her arm up very far. Her therapies have brought her a long way.


We now look at her with her third cast on and can compare the difference. In less than a week of having her cast on she was able to finish all of her oatmeal using her right arm on her own this morning! I did have to place the spoon in her hand but after that she was determined to do it on her own. One year ago she could not even attempt this.

If she is as good as she was yesterday, I'll try to get video of her eating her breakfast. Then you can see for yourself.

Cerebral Palsy Awareness Day

As most of you know Twink suffers from mild cerebral palsy due to a in utero stroke. For those of you who do not know Twink she is a beautiful little girl who is smart, funny and loving. Twink's whole left temporal lobe was completely damaged as well as a small portion of her cerebellum. Her neurologist was pleasantly surprised when he saw her for the first time. Nothing like he thought he's see. He had just finished reading her file and was expecting to see a child not doing as well as Twink.

Twink does have difficulty with her her speech and but communicates in many ways. She is mastering sign language. Twink has a very small limp and fist her right hand. Other than that for our child most people can not tell that she has CP.

Education is everything and there are many people who are afraid when they hear the words Cerebral Palsy. I will admit our family was one of them. In fact it was not one of our special needs we checked of for our medical check list. Good thing the Lord knows best! :) What better day than today to educate people about Cerebral Palsy!


- The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?
Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Now mind you these are US statistics not China. Although it seems China is referring many children these days with CP.

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.

Improving Everyday!

It's been awhile since I've given any updates on how well Twink is doing so I thought I'd take a moment and share some things Twink is doing. It seems positive peer pressure is working to our benefit! :) Since school has start she is trying to do so much more in so many different areas. Twink is now able to walk up and down the stairs holding on to a railing or the wall (she used to crawl up and scoot down on her bum). She is feeding herself most meals with a fork or spoon, she is working on holding her own sippy cup (she still prefers to use it like a bottle), she can use a straw, she waves, she starting walk holding hands and when you ask for her hand she hold out her hand that the stroke left week. I'm not sure if school is working with her on that but that is the one she always gives me.

Are you wondering about the sensory issues? Well......we are getting there! LOL She does not like the thought of getting in the tub but once in there she is fine. She will play and laugh until it is time to wash her hair. She hates that with a passion. She is better about me washing her little body! :) She does not cry anymore and will stand up for me. She also does not mind having lotion put on. She likes to rub it in except on her arm that the stroke affected. It must feel different. She does still hate to have her teeth brushed. We are working on it. As far as brushing the hair, it's getting better. She lets me put a clip in or one pony but not two. If it's two then it's a fight!

As far as speech, this is where we get frustrated at times. She is very good at getting her point across but some times it is hard not knowing what she is thinking. Right now she says uh-oh, ding-dong (belly button), uh-m (for no), up, cracker, meow and hi. A couple of these words you have to ask her to say and she'll say them but we hear the rest a lot. She has said the following during speech therapy or early on - mama, dada, goat, tree, hello, kitty, boat, and car. Now I'm sure I missed a few but this gives you an idea of what she has been working on. (I can also look back for future reference) Some of those words have come out clear as day, some not so clear. Car comes out like she should be in Boston! ;) We do not live in Boston. LOL She is using more signs to communicate. She is doing very well with them too. I think we are going to work with her a bit more with it. I must say Twink understands EVERYTHING we say to her. I get rather frustrated when people imply that maybe she does not. Our daughter follows directions better then our 4yr old daughter! Just because she can not talk does not mean she does not understand. I think this is going to be my biggest struggle until she can talk. Trying to get people to understand that she does understands!

We have hit a turning point with her recently. She has started to just blossom. She is loving, playful and her tantrums have lessened. She loves the children SOOOOO much and really looks forward to them coming home from school. The first thing Spitfire usually asks when she gets off the bus is if Twink is home and if she is still awake. :) She will usually then tell me that she loves Twink so much. It just melts my heart.

I know this is getting long and I will stop for now but I wanted to share what our baby girl is doing. I know I usually post about all her medical stuff and it can get overwhelming but I wanted to just tell you all the good going on. We thank God everyday for her. She is ours thanks to Him! :) Oh check back this weekend we have some thing exciting to share! :)

**Edited to add that Twink is trying very hard to jump. It is sweet to see. She likes to dance. I'll try to catch that on video because it is really sweet. Oh and did I tell you this child can eat! She eats everything and anything. She LOVES food. I actually have to cut her off because she can eat more than I can. Ok no more for now!

All About Twink

Twink has now been with us for 5 months! It hardly seems possible. She has molded into our family like she has been with us forever. We see new growth with her every day. It may be little growth everyday but we'll take it and run with it. I was talking to my friend last week, telling her how I had a 6 month over and that baby was babbling the same sounds Twink was. I was pretty frustrated and down that day. She had to gently remind me that this baby did not live in an orphanage/foster care in China or have a stroke. Both of which I knew but still makes it hard to realize that your almost 2 1/2 yr old is 2 years behind! Twink is starting to make more sounds and is saying Mama, Dada, Baba and a few other things. She gets her point across by either pushing you or your hand to where/what she wants. LOL

We went to the audiologist yesterday and she was not very cooperative. I knew that would happen but we had to try. They were able to test the level of pressure in her ears and found that both ears are full of clear fluid. I was told they are NOT infected and antibiotic will not clear them up. We are going back on the 5th of June for the same test and if we have the same results we will look at having tubes placed. I was also told that while she was sedated that they could do all of the hearing tests they needed and would be able to determine if she had any hearing loss. It is pretty important to find out if she does have any loss on the side she had the stroke. If there is any hearing loss she may require a hearing aide on one side hopefully not both. The audiologist did tell me that doctors can not always see this fluid because it does not cause swelling or redness.

Twink received two shots last week and did great with them. She needs two more and we will be finished. They had wanted to do them all at once but I refused because of the possible fever and seizure issues. She had already had fevers last week so I did not want to have that fear again. She does seem to have some sort of dime size sore on her bum and I'm not sure what the cause is. It started out looking like a little pimple then a blister with a little puss. It broke open so I'm thinking we need to get it cultured.

Her sensory issues drive me crazy at times. I don't know if I have more patience or if she is getting better about things. She totally hates taking a bath and having her clothes changed. Brushing her teeth, you'd think I was using a rake on them or something. Brushing her hair is actually getting better. Lotions are usually soothing but to her must feel like there is sand mixed in it.

Twink has cut two of her two year molars. She still has two more to go. Eventually we need to see a dentist but I really dread that visit so I'm not pushing that. All of the other testing has come back great! Did you know all babies were born with a whole in their heart? It should close soon after birth. Twink's is closing and we should not have any problems. We are waiting for an appointment with neurologist and no longer see the stinky neurosurgeon! The hip x-ray came back great so for now we do not need to see a pediatric orthopedic! Our list of doctor and to do's is getting down there! Maybe there is an end in sight and we will just have our follow ups!

So hopefully after I get the house clean I'll make it over to your blogs today but I need to do some cleaning and get together my quilt squares! My friend is getting ready to make Twink's quilt!

Disabilities and Dreams!

I found this on my e-mail loop for children who have hemiplegia and cerebral palsy. I thought this was a great interview!

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=4006074n

Looks Good!

After three hours at the pediatric cardiologist, one EKG and one echo cardiogram a VERY nice doctor came in the room to tell me that Twink's heart looks great! Thank you Lord for answered prayers! He did ask if anyone has done any blood studies on her and I told him no. So I'm wondering if we will be doing blood studies next to rule out further strokes.

So I was writing to a few friends today about what all Twink has had done since she has been home. Let me list them here so you can see for yourselves. Let me add that Twink has only been in the states for 3 1/2 months!

Has Had or Seen
Sees a Developmental Doctor
Sees a Family Doctor
Sees a Neurosurgeon
Went for a 2nd opinion with a Neurosurgeon in Boston
Saw a pediatric eye doctor
Saw a Pediatric Cardiologist
Had two sedated MRI's/MRA
Had an EEG
Had an EKG
Had an Echo cardiogram
Had labs drawn for her titers for immunizations while sedated (MRA)
Had febrile seizure that lasted 60+ minutes
Rode in an ambulance
Visited our ER
Has OT, PT, SP and a teacher come to the house

Still Needs
Pediatric Orthopedic Doctor
Pediatric Neurologist (will take over for the neurosurgeon)
Pediatric Dentist (should be FUN!!)
Audiologist
Hip X-ray
Poss. Pediatric Hematologist
WHO KNOWS WHAT ELSE!!

So as you can see we have been very busy! Twink has been to some doctors probably every other week since we have been home. I look forward to the day when the appointments slow down. As for now we just plug along doing what we need to do for our daughter! We may tire but her smile gives us strength.

The Phone Call we were not Expecting!!

We had our long awaited appointment with the Neurosurgeon today the city. I wish I could say that it was a good appt and that we loved the Dr., but neither were the case. We were brought back right away and asked to change Twink into a gown, she loved that!! We proceeded to then wait about an hour and fifteen minutes before the Dr. and his assistant came in. Needless to say we were a little bit annoyed. Dr. sat down and asked us what we knew and what was going on. After about 2 min of us talking, his phone rang and he excused himself and we did not see him again for about 25 min. When he came back in he talked to us for about all of 10 minutes. Before I get into the appt lets back track a little bit to earlier in the week…..

We knew going into the appt. that things had changed drastically from what we thought was going on. The phone call we were not expecting occurred Tuesday, earlier in the week. Twink’s Dr. who is in charge of coordinating all of the various therapy’s called and said that she had viewed the MRI and talked to the MRI techs and that what looked like an arachnid cyst was not a cyst at all. Apparently Twink had a stroke at a very early age and more than likely it happened in the womb or during child birth that caused damage to the brain. She does have cystic pockets where the damage occurred. This was briefly mentioned awhile back as a possibility but then was quickly dismissed once this Dr. saw her so we did not think about it again. The news felt like another blow to the stomach, one that we were not ready for. We had spent all this time learning, reading and conversing with people about arachnid cysts and now we find out it was something else that sounded a lot worse on the surface. It felt like we were starting all over again. Basically she has a mild form of cerebral palsy, right sided-hemiplegia. We rushed to do research on CP but didn’t like a lot of what we were reading so we decided to trust first in the lord and second in the visual improvements that we continue to see in Twink almost every day. We then decided to wait till the appt to do any further research and we spent our time instead preparing our questions for the Dr.

We were hoping that we would have an awesome give and take with the Dr. but that just did not happen. He seemed a little arrogant and also seemed quick to get us on our way. We are thrilled that we have a second opinion in Boston on the 26th. Basically there are no surgeries or procedures or really anything that we can do. Twink has some brain tissue damage that is affecting her speech and her right side. The course of action is to continue with all the therapy’s and that is about it. No guarantees as to prognosis. We know that Twink is going to far exceed any of our current expectations. She is so strong willed and determined. We continue to thank the Lord for this precious life and feel blessed that she is apart of our lives and we hers.