CIT Complete!

Friday we made it four weeks with the cast on. Lets just say it's a miracle! Twink does well for the most part. It seems that when we place the cast on it turns on every neuron in her brain and it sends this already hypersensitive child into over drive. Hopefully blogging about this will remind me when we do this again in September.

As you can see from the picture above Twink is already fisting or tucking her thumb. :( It looks like we are going to have to use a splint but it seems so bulky. On a good note she is still using her right hand to feed herself with her spoon or fork. Anything and everything else is done with her left. She is also raising both arms when she wants to be lifted up. Her fine motor has improved greatly with this casting.

We are trying something new. Most of you know Twink struggles with her speech. This casting did help with her speech but not nearly as much as the first two. I have heard that Omega's have done wonders in children who have apraxia. We have decided to start Twink on Nordic Naturals Omega 3-6-9 Junior We figure it can't hurt anything to try them. If she gains more speech skills then that is wonderful! She has about three weeks with her ST that she's worked with for the last year and a half before she transitions to her new school. I would love for her to see Twink make some huge gains as they have both worked so hard together. You can count on a post in a couple weeks on an update.

CIT 3 Weeks Down!

I can hardly believe it but we are now working towards four weeks with the cast on. This is the longest Twink has had the cast on. I spoke with her teacher today and she told me that she has seen Twink more frustrated with this casting. A couple of times they have had her completely lose it at school and when this child has a melt down it can go on for awhile.

Good news is her teacher and OT have noticed that her fine motor skills are improving! :) See all that hard work is paying off. She is still doing things with her left arm but not like she could before. The cast is actually suppose to include the elbow but for some reason her therapist that does the casting does not cast her arm that way. She might actually benefit more if it was done properly.

These pictures are hard to come by. She is usually full steam ahead and not straight faced. I must say I was in the right place at the right time for this picture. :)

Can you see what hand she is using?!?! I believe I was telling her to use her right hand.

Only appliance that is magnetic (darn stainless steel)! She loves this toy. She was dancing along to the music. Too bad I didn't video it.

We will do a word count at the end of next week and see how many more words Twink can do. See before the cast went on we did a word count. Every time the cast is placed on Twink becomes more vocal. This time we decided we'd actually track it. So her ST and I sat down and made a list. I think we came up with 35-40 words. Not very good for an almost 3 1/2 year old but for some one who had a stroke it's great. For a little girl who's stinky (old) neurosurgeon said she'd never talk, I hope we see him one day so we can show him how wrong he was. :)

Keep up all the hard work baby girl we are so proud of you!

Compare Video's

Twink is finishing up week two of contraint therapy (CIT). She is doing very well except for when we do this her emotions are through the roof. She is ten times more sensitive with the cast on then when it is off. Now if you know anything about Twink you know she is already sensitive. I must say she makes me a bit crazy when she has the cast on. LOL

Here are the video's of her feeding herself like I promised. Look how far she has come! :)

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!

School Days

Last week I decided to go to Twink's school and hang out for the day. We brought in mini-cupcakes for Twink's birthday. I must say it was great watching her with her teachers, therapist and friends. I've worked with most of her teachers and therapists at our house but there were a few that I have not.

You can see the young lady in the picture below is playing with Twink in the sensory table. That table is full of bird seeds. I can tell you most of the kids LOVE this table. Twink really seems to like this young lady.
In the picture below the young lady is scooting her hidden hand towards Twink and she lets out a squeal when her hand pops up and out. They must have done this for 15 minutes.

This is Twink's main teacher. She is great and has been doing this for 30+ years. We've only had her since September but she is really sweet with all the kids.

Here you can see Twink is in motion and another teacher's aide behind her. Well you see my daughter has claimed a rocking chair in her class room. None of the other children are allowed to sit in it during circle time unless Twink gets up to sit in another chair. The reason she is allowed "the chair" is it helps keep her focused. She will sit and rock the whole story and listen. She used to get up and move about the room. When it is time to stand up for song she does it with no problems but also knows when it's done to turn and sit in her chair. She was rocking so hard I thought she was going to go over backwards. I believe that is why the aide is behind her.

Twink is enjoying her 2nd mini cupcake that we sent in. She really liked those. I had a picture of her drinking for an open cup but it must not have down loaded! She is doing pretty good with that as long as they don't fill it too full.

Here is her PT! :) We have been working with her since Feb 08 and I love her! She is probably the only Asian person Twink sees on a regular basis. I believe she came from the Philippines. She works Twink quite a bit but it's been great to see her progress.

I love the last two pictures, it just shows how much she loves Terry! Only once did I see her get frustrated during the day and that was because I was not doing some thing she wanted me to do. I'm so glad that she received a spot in this class. She moves on come June.

So there you have it, this is what Twink's day is like when she goes to school. Hope you enjoyed the pictures! :)

Practice Pictures

The weather here has not been the greatest to say the least. We are in single digits this week and will be getting some more major snow. Remember how the kids had a day off last week due to ice? Well this is what it looked like the day after and they had school. Let's see if they have a full week of school this week. My bet would be no.

OK here are some of my pictures that I took using my camera in the manual mode that Carla talked about in her first session post. I was practicing using a Pepsi bottle at first. When I finish my round I turned and shot Spitfire doing this nasty! LOL

Jewel wrote a message on Twink's cast and then Twink decided she wanted to try and write on it.

Third Cast

So really this is our second round of casting but Twink's third cast. The casting went much like it did the fist time only I did not have to go back and hold her! :) She was not happy and I could hear her clear down the hall. As soon as she was in the car she was a much happier girl.

While at the office I met another AP of a little girl with cp from Russia. Her condition was much more severe than Twin's. We chatted for a few minutes and she asked if we tried constraint induced therapy. I was excited to show her Twin's cast and explain how we were doing things and how well it's been working for Twin. I think she knew we were there for that and that was her way of asking. She is new to our state and I was able to point her to our developmental doctor whom I love so much.

Twin seems to be tolerating her medication well so far. We are slowly working up to to her full dose. It will probably be another week before she is at full strength. Oh and Twin will be 3 years old on the 15th! :) I guess I better get planning some thing if we are to have a party. Last year we were not home a month yet. Not to mention I went out to get a cake and came across a serious car accident. We will not have a repeat of last year!

So that is what is going on with our girl. We don't have another appointment until the end of the month and that should be an interesting one! (I'm rolling my eyes)

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!

Scissors Anyone?

Twink did not have therapy with her private OT last week due to our crazy schedule and for the fact they never gave us an appointment. I'm not really sure where I would have fit it into our crazy week so I am a bit relieved. I have tried to call twice this week to get her in but I have not received a phone call back and I'm rather frustrated. This cast is not working for the shear fact that her fingers are sticking out too far. I'll take a picture and show you just what I'm talking about. She can do just about anything she wants with it. She can pick up a book, a crayon, and so on. The only thing it is doing is making her angry that she can't hold on to some thing with her whole hand.

If I do not get a hold of some one today or tomorrow I am cutting the stinking thing off! She did great with the first casting but they really did a poor job with this one. :( This mommas patience is wearing thin.

On a positive note the casting has forced Twink to use the right side of her brain and her speech has picked up. She is babbling much more and the other night she busted out with the word owl. Why she can say owl and not momma is beyond me. Owl comes out as clear as day and I do have that one on video! :) Look for that video on the main blog. Sorry I've been so scares but last week and this week are busy weeks for us. I'll write more soon.

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!

Decorating

We have been Decorating for the holidays here at our house. One of the things we do every year is put a tree up above our front door every year. We place white lights and silver bulb ornaments on it. Then under the tree we place empty boxes that are wrapped in colorful paper. It add cheer to out foyer and also our landing upstairs.

The day we pulled all of items out to do this Spitfire placed a bow on Twink. Twink was loving it. Spitfire placed another on her and Twink puffed her chest out and went to show off her new items. I thought for $1.97 why not just place all of them on her and buy a new bag. She thought Spitfire was trying to take one off and backed up and shook her head NO. These are the pictures we took of her after we finished placing all the bows on her. Excuse the boxes, we had not wrapped them yet.

Update

Twink is doing fantastic! Her therapists are all amazed by how well she is doing. Yesterday we went for her outpatient therapy and they took her cast off. I was praying that they were going to put it back on because I still think it's too soon. You would have though someone was torchering her the way she was screaming! I had to go and check, that's when I saw them taking the cast off. After it was off she was whisked back to a "play room" for her therapy.

We were there for about 45 minutes maybe an hour. I was relieved to see her come around the corner sporting a brand new cast! :) Her therapist said she played for 30 minutes with just her right hand but then realized her left hand was "free". She told me that it is good and she is learning that she has two hands instead of one. We will go back next week but it will be a crazy week. We have our 12 month post placement visit with our social worker, two neurology appointments (one for Dash and one for me) and my monthly lunch I host for the ladies of our church. It should be interesting. Anyway, thought I'd share and I will have video soon.

Wordless Wednesday

Creative Play

As I said in my last post it's cold here! I've had to try and think of things for the kids to do in the house that is different. Well Twink loves to play with the sensory table at school. Sometimes it has tried corn, beans, oatmeal or rice for the kids to play in. Well I decided to try the rice. I bought a big bin and a 20lb bag of rice and dumped it in. Bought a few measuring cups and tada a great new toy! Wellll, it gets every where. LOL As you can see it is big enough for BOTH Spitfire and Twink to sit and play in it. I have decided that when the rice is gone I will do beans. It will be easier to pick up. :)

Can you see Jewel getting in on the action? Oh yes, let's not forget that both Jewel and Dash like to play with the rice also. I ran to the store and left Jewel to babysit and when I returned I told them it was time to put the rice bin away. I started to vacuum and couldn't believe all rice I was picking up. I asked Spitfire why there was rice all over and she told me that her and Jewel had been throwing it. No lie I must have vacuumed up a pound to two. You would have thought that a 13yr old could refrain from throwing rice! LOL I guess it was too tempting.

In the bottom picture Spitfire was using glue and placing erasers on a note book. I have no idea why but this kept the two of them busy for an hour! Twink loves to glue but only watched this time. She did try to snag a couple of erasers though. I find it amazing that kids can be so creative. I think my creativity is all dried up! LOL

Take A Peak

Of course I have to place the sippy cup in her hand but the fact that she was able to hold it there until every drop was gone amazes me! She amazes me and gives me strength on days when I am feeling overwhelmed. Things are going so much better than we could have ever imagined. I hope to upload some video of her eating this weekend. Kind of where she was earlier in the week and where she is now. Now off I go to show off what this baby girl can do to her therapist who has not worked with her since the cast was put on. :D

So Far So Good

Things here are going very well so far. I would have to say the most challenging thing would be meal times. Twink wants to eat the minute the food is seen! Actually, I think the minute she smells it she starts to whine. :) She LOVES food. Twink starts off with the help of us bringing the spoon or fork to her mouth and she brings it up the rest of the way. She gets very frustrated if we do not keep "shoveling" the food in her mouth.
Bath time has been another issue. We can not get the cast wet at all. What I do is lay her on the counter while holding her head over the sink. That is the easiest way to wash her hair. As for washing her body, I stand her up in the sink and wash her from the waist down. She hates having her hair washed so she totally hates this new way of bath time!
We have had extra OT and the therapist is thrilled to see the movement in her hand. She is still have some trouble keeping her thumb out but we have some stretchy therapy "tape" that is helping keep it out. Over all, we are thrill with the progress. I can't wait to see where we are at in four weeks! :)

Burrr

Ok, I can't stand the cold weather! LOL Boy do we live in the wrong state. It is freezing here. We've had snow the last couple of days but nothing that really sticks long enough for the kids to play in. I must admit it is beautiful though. To see fresh snow after it has just fallen is as beautiful as the leaves changing in the fall.

We have been busy with doctor appointments and therapy for Twink. She is doing very well. Growing like crazy. She loves to play with Spitfire but it is not always a two way street. It depends on if Spitfire feels like Twink is more in the way or not. We are working on that. They are sweet to watch though. Twink now weighs 30lbs and is 36in. She is catching Spitfire fast. I don't think she'll ever catch Spitfire in weight (Twink has a super fast metabolism) but I do think she will pass her in height. We'll have to wait and see.

Jewel and Dash are doing really good also. Jewel went to her field hockey banquet last night so field hockey is officially done. She is thinking of doing basketball for her winter sport. Dash is doing bible quizzing again this year and I think will have a practice quiz after the new year. Other than that nothing much other than keeping up on school work.

I've had a lot of migraines this past month. More than the usual and will have to talk to my neurologist about it. I'm praying that it was just a fluke and won't mess with my medication. If they increase it I won't be able to think clearly and my blogs may be jumbled words. Maybe the blogs already are! LOL

Well I hope your all having a great week!

Speechless

I stand in awe that Twink is doing as well as she is with her constraint therapy. The Lord is so good and I see him working with Twink!

Twink reacted much like we suspected she would at the doctors office. As you can see in the pictures in the post below she was angry. She did not want us restraining the arm and then when she could not get the cast off, OH MAN! She held her arm up in front of me and yelled. I imagined she was telling me that she did not like it and she wanted it off right now. That's when she proceeded to throw herself on the floor. I felt bad, but not as bad as some of the other things I've had to do. She finally let me pick her up and I looked at the OT as she is telling me instructions of how to cut it off it is just too much over the weekend. I looked her in the eye and told her that we she would be OK and that she will do well with it. I'm not sure she heard me through Twink's screams but I did hear her repeat that she will do well.

We left her office and Twink relaxed. When we returned home Twink was running around and playing with Spitfire like nothing even happened. Jewel yelled upstairs to tell me that she was signing with her right hand. Sure enough, she was. She was trying all sorts of different things that she had never done with it before.She was building block towers, opening doors (pull down handle) and pushing buttons.

Things have gone much easier than we could have ever imagined! We really thought she would have fought us longer but I am so relieved. She has been happy and playing like the cast is not even on. She is even trying to feed herself which is a bit hard but she is getting better at. I'm speechless with Twink's strength and determination. She is stronger than any child that I know and yet she has weakness on one side of her body. God has made her perfect in every way.

Thanks to all of you who have been praying for us. We have felt those prayers. I pray that Twink continues to stay as relaxed about the casting as she starts therapy's this week. I will post more pictures later in the week. I will also do a video update on Fridays. The video below is from Friday night just hours after the casting. Look at Twink go! :) Speechless