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 A truly frustrated, withdrawn, grief stricken child.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!

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!! :)

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.

Next Step, Boston!

Well today went much better than the last scan we had done! The doctors were much more friendly as well as the nurses! Twink's main anesthesiologist was Chinese and asked which part of China she was from. I must say he made her a bit nervous but she did great. We were able to have her titers drawn for her immunizations while she was under sedation which was HUGE! I can't imagine holding her down and trying to stick her with needles. YIKES! We decided to have the titers drawn instead of doing all of her immunizations over. We had planned on doing all of them over but now with the threat of her having a seizure after each one, we've decided to see what she actually needs. Thank the Lord we were able to do it under sedation. It took them 30 minutes to just get the blood and then another 30 minutes to do the scan. I think we backed them up but I'm so glad that things went so much smoother this time. We were able to get all the scans on a disc so we will be able to take them to Boston with us. So, we leave next week with TONS of questions and hopefully we'll get plenty of answers. Thanks for all the prayers today! They helped us very much!

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!

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.

The Rest of The Story

So yesterday started out great! Twink went in for the MRI and I was able to stay with her until she was completely out. AS soon as I left the MRI room the nurse greeted me and told me what would take place after she was done with MRI. I did not like what I was hearing. She told me that Twink would not be sedated for either of the other two tests. I tried to protest but it didn't get me anywhere. She told me to hope for the best and maybe she would be sleepy from the anesthesia.

Well guess what! She was not sleepy and she fought! Just like I knew she would and just like I told them she would. I'm not sure who is at fault here but there was some serious mis-communication somewhere. I know that my doctors’ office called and had talk to them last week but who knows what happened. From the MRI we went to the EMG and tried to get that test taken care of. She was too worked up so we decided to move onto the EEG. At this point I was very ticked off. I knew I would have to hold Lia down for the EEG. Sure enough I did but not only do I but two other people along with the lady trying to put leads on her head. It was not fun. No one really believes me when I say I have a strong little girl! I call her the bionic baby! The guy who was helping joked later and said "That work out was better than a Jane Fonda video". They left so I could calm her down and it worked. We were able to get the EEG when one lady returned and it turned out perfect. The lady told me that they should have gone down to the MRI and put the leads on when she was still sedated (which would have been perfect). She felt bad for the way things turned out.

Today Twink is not feeling well. She had a runny nose yesterday but today she is running a fever. Thankfully she didn't run the fever yesterday or they would not have done tests. So thank the Lord it's just a cold and it happened to be today that the fever started. Thanks again for the prayers! We go Friday to find out the results of her tests and to talk to the neurosurgeon. We’ve been waiting for this appointment for what seems like forever!

Long Morning

We are home and very tired! Twink had two of the three tests done. I will post more after she and I get a nap in. Thank you for all your prayers. Oh, she had the MRI and the EEG. We were not able to do the EMG (hearing test) and no the EEG was NOT under light sedation! :( More later.

Make Up My Mind!

So yesterday while I was on the phone with my best friend in the world ;) I get another call. I end up taking it and it turns out to be the hospital calling to tell me that two of Twink's test will not be done under sedation! WHAT! Noooooway! She asks me questions on how she is normally and if she has autism (no) and so on. She says she’ll still be sleepy from the sedations and see no problem with doing the EEG without sedation! I tell her she does not know my child and how strong willed she is. She also does not know how a child will wake up from sedation because every child wakes up different. I told her that if I had to leave her she would freak. She was very nice and told me I could stay with her at all times. I so didn't believe her because then she told me they don't do sedated hearing tests! I don't think her doctor would have ordered one if they didn't do them! She asked me if I wanted to reschedule and that is when I broke down on the phone. I just want these tests done so she can go to the doctors next week with results. We've waited what seems like forever to get into get all of this just looked at. So I told her no and she reassured me they've worked with many different children and that they loved children. I proceeded to call her doctors office and spoke to a lovely woman who schedules all the appointments. She was so super nice. I told her I was no longer comfortable with the fact that Twink would not be sedated when everything was ordered (and I had her double check the doctors orders) that way. I told her I would like to cancel the EEG and hearing test. She was going to double check with the department for the hearing test to make sure they did in fact do the sedated hearing tests also. I ended up getting a phone call back from the nurse for the doctor Twink sees and she checked into everything herself and we are going to stick with everything all the tests this Thursday! This is what she told me. She said that with the MRI Twink will be completely sedated and with the EEG and Hearing Test it will be a lighter sedation. SOOO she will be sedated but not completely under! She will have an Anesthesiology with her at all times with a team of nurses also. I feel so much better! Thank you Lord! All I could think about was trying to hold my poor baby down like I had to for the eye test which I would not have down again! I would have completely told them to reschedule. So the Lord was looking out for us yesterday!
Twink has been doing really good about sleeping through the night, which makes me happy! She wakes twice a week maybe three times but only one time a night. We have a pretty good schedule going on right now. We have PT coming today to do their evaluation on her so I better go and get busy!

Home 8 Weeks Today!

Today marks the day we've been home eight weeks! Sunday was our two month anniversary of Metcha Day! So much has happened in eight weeks! We received Twink's CoC (Certificate of Citizenship) last Friday and a nice letter from President George Bush. We can now file for her SS card! Twink is doing so much better than when we first came home. She has come so far in eight weeks BUT she has so far to go. We have started all her therapy and I can tell you that it is going to be a busy time for us here. We have four different people come into our house four different times a week! We are just now trying to get a schedule worked out. I can't wait to have a def. schedule to work with. Today we had our first OT visit and Twink was not very receptive to Allison working with her upper body. Twink got very frustrated but we also had to change her schedule for her therapy. I hope this means she'll go to bed earlier than 10pm. Here are somethings Twink is doing that she was unable to do when we met her on December 10th.

1. Twink is now sitting up without leaning to her affected side.
2. She can bend her right knee and squat instead of kicking her leg out straight.
3. She is taking solid food; she was not taking any solid food when in China. She also has an oral aversion but is slowly getting better.
4. She is walking without limping unless she is tired.
5. She comes to both The Count and I freely.
6. I get kisses but no hugs.
7. She does not like to be cradled.
8. She hates bath time; we actually bath her in the sink so she can't through herself back.
9. She hates getting undressed.
10. If she is mad she will not make eye contact.
11. She loves to cuddle up when she has a bottle but only if she is in the mood.
12. She is taking a sippy but a soft tipped one.

Twink LOVES playing with the older kids! She loves to climb all over Dash! Dash loves it too. He begs to get her out of the crib in the morning but I don't think that is such a great idea. Jewel is such a huge help and Twink loves to go to her and get hugs! She also loves for Jewel to pick her up if mom or dad is busy. Spitfire and Twink are the best of friends! Just what we had hoped and prayed for! They love to play together and chase after one another. It is so cute to watch the two of them together. Kera is pretty protective of her little sister. Tomorrow Spitfire is bringing Twink to her Valentine's party at school. She can't wait!

This coming week Twink has her sedated MRI, EEG and Hearing Test. That should prove to be an interesting day. I don't think we'll get any results until the following week but you never know. I'll keep you updated.