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!

The Binder

This is Twinks medial binder. This is great for a child who has a complex medical condition and sees multiple doctors. This was once recommendation to to me so I am now passing it on to all of you. What I have done is collected all of Twinks medical reports (MRI's, MRA's, EKG, ECHO, EEG, etc.) and keep all her recorders in one place. I bring them with us to her medical appointments. I can not tell you what a great suggestion that was. When I brought this binder to our first appointment with our new pediatric neurologist he was impressed. He told me he recommends this to all of his patients parents but many do not take the time to actually do it. He said for me to actually show up and already have one was impressive.

It just makes it very convenient if we go to a new doctor and they don't have a report. I can just pull it out of our file and say here you go. Make a copy and return mine. The only thing I lack and still plan to call on is Twink ER visits. Other than that, we have test result and initial report for every doctor she has seen. I hope this has been as helpful to someone as it was to me.

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.

CIT Week 1

How sad is this face? From the look on her face I swear she is asking me "Why are you taking my picture and WHY won't you help me?" The thing is, this child is stubborn! She can feed her self but will not try. This is her third casting and I see huge improvements from her first. The first casting she could hardly lift her arm up to her mouth and would constantly bring her head down to her bowl. She does this still but not nearly like she used to.

Look how high her elbow is. This is HUGE for Twink. She is able to "dig" her spoon into her oatmeal unlike before. Now if only we can improve the strength in the hand. One step at time I suppose.

Look at how open her hand is! Yippee. Twink usually fists her hand and tucks her thumb between her pointer finger and her middle finger. When she has the cast on it makes her open her hand and use it more. We have found that she is a bit more off balance this time around with the cast. Not good because she does not catch herself when she falls.

Now I know these pictures I've posted make her look very frustrated and sad. The first day or two is always the hardest but she rebounds very quickly.The only time this usually happens is when it is time for her to eat. I swear her world revolves around food. The cast is not slowing her down and she is happy as can be. We can't thank you enough for your prayers.

Did I mention Twink told Jewel and I "I want ice cream"? Yes, this happens once and awhile where she blurts out very clear sentences. We are praying that with this round of casting this will be a new norm. :)

Constraint Induced Therapy

Some of you followed along with our last two castings. Twink is now doing round three of CIT. As you can see from above she is not very happy. She is more aware this time of what is going on and she is not pleased. In fact when they were done placing the cast she held her arm up to show me what they did. When I didn't say anything she stood really close and put her cast two inches from my nose. She started mumbling and I could tell she was confused as to why we put it back on.

Every time we place the cast on we notice a huge difference in her speech. In fact we actually took "inventory" of what sounds she makes and what words she says/has said to see what happens during and after casting. The thing is just this last week she has done a wonderful job with her ST.

We are praying that her right hand becomes stronger with each casting. She had her second round of botox to relax the muscles in her arm and in her thumb. It usually takes a couple of weeks for it to fully kick in.

Below explains what CIT is and how it works. We have tried a few different techniques but Twink was either way too smart and able to work the constraint off or way too strong. This has worked great so far.

What is Constraint-Induced Therapy (CIT)?

Constraint-Induced Therapy, or CIT, is a family of treatments that teach the brain to “rewire” itself following a major injury such as stroke or head injury. Patients can “learn” to improve the ability to move the weaker parts of their bodies and therefore not rely primarily on the stronger extremities. These therapies have significantly improved quality of movement and substantially increased the amount of use of the more-affected extremities in the activities of daily living for a large majority of children who have received the treatment. It is the only rehabilitation technique shown to produce a marked change in brain organization and function.

What does Constraint- Induced Therapy consist of?

Occupational therapists and our family will be conducting CIT treatments with Twink. Therapy consists of 3 major factors: (1) the stronger arm must be completely restrained for up to 3 weeks using a lightweight fiberglass cast extending from the upper arm to the fingertips, (2) the weaker arm must be trained using shaping techniques in a play situation that is appropriate to the child’s stage of development, (3) the therapy will be administered for 3-4 hours per weekday for 2 or 3 weeks, totaling 10 or15 days of treatment (depending on the severity of the symptoms). Home practice is an integral part of CI therapy. Caretakers will be given home practice activities to carry out with each child both during and after the program in order to assure optimum skill retention.

Please keep us in your prayers as the frustration level seems to be much higher than with the last two.

**If anyone can tell me how to make paragraphs again that would make my day. For whatever reason I can not put spaces between my paragraphs and it is making me crazy!

Medical ID Bracelet

Is this what you visualize when you think of a medical id bracelet? Me too! Well we really wanted to find a bracelet for Twink for her seizures. Problem is we didn't want something that would stand out too much and make her feel different. (Not that at three you can feel different but as she gets older) I mean she already limps and she has a hand that gives her problems. So we went on-line and found some beautiful medical id bracelets. I found a great Etsy shop and she does all sorts of bracelets not just medical id.

Don't get me wrong we wanted some thing that would tell medical personnel she has a seizures but also wanted some thing girly. So below are some pictures of her pretty bracelet. It does have a medical plate and I would have taken a whole picture of that but it has her full name engraved on it. Although I like you all a ton I don't think I want the whole world knowing our last name. On the reverse side it tells that she has seizures and gives emergency contact numbers.

At first she HATED having it on! She wanted it off but if we covered it up with her shirt sleeve she didn't mind. Now she doesn't even think about it. It did take a couple of days maybe even a good week for her to be comfortable with it.
I have to add that last week she was running a fever and we had no seizure! Thank you Lord! She is taking seizure medication twice daily and we really jumped at the Motrin. So for now we are breathing a sigh of relief.

Autisim Test Results

We had an appointment for Twink today that I thought going in was a joke but was doing it anyway. When we first brought Twink home her developmental doctor was concerned she might be autistic. For awhile she did look autistic but I knew that very well could have been from China. Well ever month Twink would improve and the doctor asked if I would do the test. At four months home we were NOT willing to do the test. The Count and I felt Twink had not been home long enough for her to adjust. We did have the test schedule when she was home for about 9 months. Well as the Lord would have it we had to cancel due to lack of insurance coverage for the doctor who performed the test. I originally wanted to wait one full year for Twink to be tested. As it turned out when we reschedule it was schedule for January of 09! Just a little over a year of Twink enter into our family.

Twink's test today determined she is NOT autistic! She does not even fall on the spectrum. :) I do believe she has some sensory issues but we can handle whatever those obstacles are.

My advise to all of you adopting children from other countries and your put in a similar situation would be to wait! Why test the in the first few months of being home? Stand firm! Give the child a chance to adjust to a totally different life. Let the child blossom in your care and you'll be amazed at the difference. Now I'm not saying that ALL children will be as lucky as Twink was but I do believe MOST will be. So we are so extremely happy to have finally gone to this doctor and to have left with some good news and not another referral! :)

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!

Frustrated!

Can the cast come off yet!?!? Ok, Twink's frustration level this week is at it's peak. Did I mention MY frustration level is at it's peak? The little one has figured out that she can use her casted fingers to do things that she couldn't the last two weeks. You see they didn't bring the cast down as far on her finger tips this last time so she is doing a wee bit more with her left hand.

She is still using her right hand which is awesome. Actually she is using both hands which is even better. That is actually the goal for this whole thing. I do believe that it may take another series of casting in the future but we will see. Twink's right thumb still gets tucked and I wonder if it's because she held it in that position for so long. We actually have some elastic tape to use that helps pull the thumb out instead of her big bulky splint.

The good thing, we should have the cast off for Christmas! We see her developmental doctor in two weeks. We will then see if she needs AFO's (special braces for her feet/legs). They PT wanted to give her a couple more months of actually walking. Twink as of LATE November has only been walking for ONE year. I'm sure she will need them as nothing has change and in her last report from her regular PT her muscles have actually become worse.

I learned a secret from someone somewhere along all of this. I keep a binder with all of Twink's medical recorders in them. All of her tests, her reports, and early intervention. It has become very helpful for having it all at my finger tips. She has so much going on and so many tests that it just easier to say well here is this and here is that. So that is my tip of the year! LOL

Hope everyone had a great Thanksgiving!

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.

For Your Viewing PLeasure

Like most of you who have already received your referral, I'm sure you remember where you were and what you were doing when the phone call came in about your beautiful child to be. I was one week post-op from a two level cervical neck fusion, in a neck brace and The Count was at work. I was trying to relax on my couch between phone calls from my anxious husband while my children were doing school work. When the first report of referrals hit the AWAA SN Yahoo Group I was done for. I was pretty relaxed most of the day up until that point. I remember Liz had a May LID and she received her phone call an 1 1/2 before ours and announced Mei Mei's referral arrival. At 3:22pm on October 5, 2007 we learned about Chu Meng now officially our daughter.

As I sat and learned of her medical condition I could feel my stomach knot and my mind/heart race. I was told she had an arachnoid brain cyst. I thought to myself "what the heck is that, I didn't check that off on our medical list." I knew of the process of how our agency worked. They looked at your LID, how long you'd been on the SN list, your medical check list, and most important they pray over each child's file. I was then told of the reason our family was chosen. I must say I was very quite the whole time just trying to absorb everything that was coming at me. How was I going to tell my husband our child has a brain cyst?

I called The Count at work and he hurried home so we could all review her file and look at her sweet face. That night I looked up her condition on the internet and found probably every scary website I could on arachnoid brain cysts. I must say I was pretty discouraged when I went to bed that night. The next morning I was able to talk to our local doctor and then over the LONG weekend a neurosurgeon at Boston's Children's Hospital. What we heard was very reassuring. After much prayer we knew that this was our Twink. We knew that there could be risks but also knew we served a big God. This verse came to mind MANY times throughout our processes of the unknown.

"Trust in the Lord with all your heart and lean not unto your own understanding. In all your ways acknowledge Him and He shall direct your paths." Proverbs 3: 5-6

On November 15th we received a brief update letting us know that she was still not walking but we were not worried. We were prepared for her not to walk until she had surgery. What a surprise it was to see her walking on our Metcha Day. We went to China with no expectations and we were blessed beyond belief for just trusting the Lord!

“Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." With joy you will draw water from the wells of salvation. In that day you will say: "Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted. Sing to the LORD, for he has done glorious things; let this be known to all the world. Shout aloud and sing for joy, people of Zion, for great is the Holy One of Israel among you." Isaiah 12:2-6

Now today we all know that Twink does not have an arachnoid cyst but has had a stroke. She is wonderful and we are so blessed to have her in our lives. It feels as though she has been with us much longer than 10 months. These were the pictures we saw one year ago today in the very order you see them. Enjoy! Oh and I hope you liked the video!

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!

More Info

For those of you with questions about submucous cleft palates you can find you answers on this site and here is a picture of what one looks like. Note this is not Twink's mouth. Twink's looks longer and thinner but you really can not look for very long without her closing her mouth. So I hope this answer those questions I've been getting. :)

Submucous Cleft Palate

OK, our speech therapist just left and now I'm sitting here in a daze. When she first started seeing Twink she had told me that it was possible that Twink had a submucous cleft palate. She told me that there would be no know way of knowing until Twink started talking more. If she tried to do an oral exam on her she would freak out so we didn't push it.

Well today Twink was playing with me and she opened her mouth wide enough for her to do an exam. She did see what she believes is a submucous cleft palate. So she is sending a referral to the cranio-facial team and I'm sure we'll have an appointment scheduled within a week or two. I know they are a busy office and I hope we don't have an appointment until November or December! LOL Never a dull moment and you can usually count us in for a medical appointment. :)

Doctor Updates

I love this picture of Jewel and Twink. Jewel was working with Twink on trying to get her to use both feet and both hands. Trying to do both is very hard for Twink. Twink does work at it for a few minutes before trying to do it her way though.

Twink saw her developmental doctor on Monday. We have decided we are going to do Constraint Induced Therapy and Botox Injection to help relax her thumb joint and elbow joint. If you notice in most of her pictures her right arm is usually bent and held tight to her body. She also fists her hand which tucks her thumb in between her pointer finger and her middle finger. Over time these joints can become contracted if not worked properly. So we hope that these procedures will actually give her some more use of her her right arm and hand.

While at the appointmant we saw a PT. I mentioned I was concerned about Twink's right foot. She sometimes drags it but will also turn it out to clear it out from tripping. Because she has only been walking for about 10 months we decided we would give her a couple more months to see if her ankle would get stronger before we needed to fit her for a brace. She very well may need an AFO. We will work on some intense therapy for the next couple of months to see if that helps.

We also received a referral (SHOCKING - we never leave without a referral to another doctors office) to another neurologist about an 1 1/2 hours from here. I told our dev. doc about the seizure meds. that the neuro doc wanted to put her on and her eyes bugged out. She said that they hardly ever use that medication anymore. I told her that I really would like to have a second opinion so she said she had a great doctor and would set us up with him. I feel great about it because it's actually at a seizure clinic!

Otherwise Twink is doing great! She is really coming along and I see her tantrums becoming less and less. Well at least they are not lasting as long. Her and spitfire are just too cute together! I love watching the two of them play together!

Great Reports!

As many of you may know yesterday was Twink's "surgery". Twink went in to have ear tubes placed and a sedated hearing test. The doctors and nurses were great! I think I was only sitting out in the waiting room for less than 10 minutes and the doctor came out and said that he was finished. He did not have to place tubes in her ears because there was no fluid or mucus. He did say he cleaned a ton of wax out of both ears though. I then had to wait an hour for them to finish the sedated hearing test.

Exactly one hour later they came out to get me and brought me into this small little room. She didn't waste anytime in telling me Twink can hear just fine! Did you hear me? Lia CAN hear everything. Thank you Lord! Now if she chooses to listen or tune you out is another story. LOL We have a follow up next week and a possible hearing test at age 3 but I think it is the standard type. She did say she couldn't promise me how well she processed what she was hearing but at this point I'm taking our victory!

Thank you for your prayers, they have been felt. We are looking forward to a very relaxing weekend!

Results of EEG

Well it was normal! Can you believe that, normal. The neurologist did say that seizure activity can take place deep within the brain and not be picked up on an EEG. He did want to put her on a medication called Dilantin but it required blood draws every 6-8 weeks so I requested a different drug. I told him that she has already been through so much that if there was something else we could use I would rather try that. I also told him that it took my husband and I to hold her down for the EEG. I can't imagine doing that every 6-8 weeks. He told me the only other med we could use was phenobarbital which is just as bad and would also require the blood draws. He did tell me because she has only had two (but lengthy) seizures he would let us try rectal Valium at the on set of her next seizure. If that does not stop the seizure then we would then have to start medication. :(

So the good news is we did not start any permanent medication yet. The bad news is we will more than likely have to start medication within the next year. The Dilantin does terrible things to teeth so I pray that they would do another EEG first.

Tuesday we go for ear tubes and a sedated hearing test. Also just so you all know my husband and I (and our church) have been working extremely hard on redoing a house for our new pastor and his family who will be moving here next weekend. So if I have not been to your blog in two weeks that is why. We only had three weeks to get this house in tip top shape. Seems like I have not visited anyone in so long. Hope all is well with you.

EEG Done

Let's just say that was worse than the first one! The poor little peanut looked like a terrified wild animal trying to break free. It truly was heart breaking. If you could have only saw the fear in her eyes, I had to look away a couple of time before I lost it. The tech finally finished placing all the wires on Twink and she fell asleep. She was beat from all the crying and fighting. I'll tell you one thing, that baby can move that right arm purposefully at will. (The one side that was weakened from the stroke that she pays NO attention to)

The tech said she was able to get a very good reading. She also said because Twink had general sedation for her MRI before her last EEG that it could have messed with those results. So hopefully Monday we will get some answers and we won't have to do that again for awhile. The tech said the fact that she didn't have a seizure with all that stress she was under was a good thing. Stress, Illness, Drugs, Alcohol, Lack of Sleep and one more item can cause seizures! Good to know! So I will let you all know and hopefully we will get clearance to have surgery on the 19th for her tubes and sedated hearing test! :) Praying the tests are coming to an end.

Rescheduled!

Twink's surgery has been rescheduled! It will take place on August 19th as long as she gets medically released from her Family Doctor and her Neurologist. Oh please pray that this happens and all goes well. I'm not worried about the tubes although getting that fluid off her ears will help a great deal with her hearing. I am more interested in the sedated hearing test. We know she hears but we are not sure about the quality.

So who wants to see pictures of Twink? Sorry I'm slacking, I don't have any recent one. I'll try to get some up soon. Sorry for teasing!

Check It Out!

Thanks to Carla I have a wonderful new look for my dress site! What do you think? If you need a blog design she does an amazing job! I have to add a few things but I will have it up and running in no time!

Twink is doing some exciting things. We have been doing some sign language with her for some time now. Well she is actually starting to use it!!! Last night she signed play after I signed it. She can't actually make the Y formation but she shook her little fist in the right direction and I KNEW what she was doing. Right after that she signed EAT! First time she has done that by herself. I could hardly contain my excitement. I was jumping up and down and "Yeah Twink" when I realized what she was doing. Can you imagine me running around my kitchen trying to find her some thing to eat? LOL Last week she signed please on command. She only does these signs when SHE is in the mood. So it really varies. Everything she signs is one handed but that is OK right now, I'm excited to know what she is thinking. She is starting to really try and repeat words. Many times she does so with out opening her mouth but today she floored the ST and I and repeat GOAT! We couldn't believe our ears! It was clear as day. WoooHooo Twink!

Since the seizure Twink has started to cry when we go to put her down for a nap or at bedtime. I'm not really sure of the reason and it does not last long but she really tries to cling to my neck. I've tried to rock with her but eventually I have to put her to bed and it starts all over. It makes me sad that she is that upset about something.

I've also decided to start a binder to keep track of all of her medical records. I've received her MRI, MRA, EKG, Echo, Dr reports, IE and plan on keeping them to reference to if needed. Hopefully I'll have a report of her hearing tests sometime next month. Still trying to reschedule the surgery. I figure with all that is going on with her it would be best to keep everything in one place and I can take it from doctor to doctor.

Looking forward to a relaxing weekend! Hope you all have a great one. We have planned a weekend getaway with our kids next month and we are looking forward to it very much! Oh I can't wait to relax!