Monday, October 27, 2008

The "B" Word...

Last Friday we had PT, which we hadn't had in 2 weeks due to scheduling. Leah and I were both very excited to see the physical therapist. We started the session with Nadine, just watching Leah to see how she is doing and when Leah pulled up on the couch and started cruising, Nadine started to really watch intently. I thought I knew exactly what she was going to tell me... "She's still locking out her knee pretty bad"...except that wasn't the case!! What she actually said was "Her knee looks a lot better", YAY!! Ok, so I know it's not 100% better, because even I can see she prefers to lock her knee, but better is better and that's all we can ask for! THEN...Nadine asked me when we were going to have our next appointment with our Physiatrist, so I told her the middle of November, so she said oh that's soon, I'd like to send her an email to discuss a BRACE for Leah.

Ugh.

The "B" word.

We've been dealing with this for awhile now and I knew that dreaded "B" word was coming. I've tried to prepare myself, and I think I've done a decent job until Friday. I kept thinking it's way off and I don't have to think about it, but it's not so far off. I KNOW a brace will help Leah and I KNOW that a brace is not the end of the world. But, I also know that having a brace there will be a constant reminder of the fact that Leah is "different". Don't get me wrong, I'll do ANYTHING to help Leah and if a brace is what she needs then she will have a brace, heck she's gonna have the cutest, most stylish brace around! :) I know that after a few days of having a brace, we will all get used to it and it will be fine, but like the cast, it will just take sometime to get used too! I hope that the brace works well for Leah and that it helps her to do all the things a little girl is supposed too do!

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On another note, Leah had an AWESOME OT session today. She is doing really well with the removable cast. I on the other hand have a really hard time finding the right time to put it on her and just putting it on her in general is very difficult! It's a tricky cast to get on her little fingers and hands! We won't have to worry about it for long, because she will be fully casted on Monday! Anyway, she was just rockin' today in OT, lefty was doing everything he was supposed too! Leah's movements were focused and smooth, she knew what she wanted to do and she used lefty to do it! She still has a very difficult time grasping things, but her being able to open her hand has improved immensely over the past few weeks. I know I'm all over the place with my emotions and the casting, but I just can't help but feel that overall this is a really good thing for her! I'm so happy to be in a really good place! :)

On a sad note, I took a really great video today in OT, and when I went to re-watch it I realized it didn't record! Boo...

Thursday, October 23, 2008

CIMT--pics and videos! (Finally!)

We haven't been doing any form of casting lately. Leah got out of two casts and then we recasted, cut it off and made it removable. I am having a REALLY hard time with the removable cast because it is really hard to get on! Our OT has had it in her office since Monday, working on making it easier to put on and we will get it next week. I'm still hoping that in the next 2 weeks we will be recasting fully. I see amazing progress with Leah's overall use of lefty. Here are some pictures...we have had to start strapping, my very mobile little girl, down! :) She loves to move around so her booster seat makes a perfect little seat for her to play in! :) These pictures are from about 2 weeks ago, when she was fully casted. In the car, right after getting the cast on...
video

AHA Start! Walk

Thank you everyone who donated! We raised over $1,500 alone and our team "Big Steps for Baby Strokes" raised over $11,000!! We had a fantastic time with everyone from our team!

Here are a few pictures...







Avery, Leah and Sean

Wednesday, October 15, 2008

Sorry...

...about the lack of blogging.

I have been really out of it lately, with a lot of things going on at home. I've been feeling a little down about where Leah is and about how the casting was going, so I have not been in the mood to blog.

Leah got out of the cast again Saturday night. We re-casted on Monday, only to cut it off and make it removable. I will get the bi-valved cast on Friday. I'm not thrilled with the idea of a removable cast, but for now it will have to work. I was not thrilled with the casting specialist at the practice we go too, and I would like to try to find someone else to do it. I'm not understanding why Leah is able to get out of the casts! I just don't think that should be happening. We don't have OT until Friday, then we will discuss what our options are. I was really looking forward to CIMT being a really positive experience and so far is has just made me really upset.

I'm going to try to get back into the blogging mode, soon!

This weekend I will be walking in the AHA Start! Walk...if you are able to donate please click the blue box to your right! Thanks! I hope to update after that, but we are going to be away Monday through Wednesday next week, so it may not be until later.

Friday, October 10, 2008

Casting Update!

Leah is still doing great with the casting! She's getting around perfectly! I'm so pleased to see improvements in her awareness of her left hand. She is really trying to grab things and reach for things. I still see how difficult it is for her, but I love that without anyone initiating she will try by herself.

Leah has been getting really fast at cruising. She's really favors going to her right, because then she has to do less work with her left leg. Although, recently she is going both directions with ease. Next week we will put some knesio tape on the back of her knee to see if that helps with the knee locking. Leah's PT did say that the knee locking is looking better, but still there. Leah has also started to get on her riding toys! She has a lion that she loves to sit on and push the buttons to have it roar! I've been amazed that she started doing this with the cast on, I was really expecting the cast to throw off her balance. Anyway, Leah showed her PT how she was getting on the lion and her PT was very impressed. Leah is getting on from both directions. Which is so great because this means that when she gets on with her left leg over she is lifting her leg up and over and when she gets up with her right leg over she has to balance on her left. Both really good for her! Her PT who has never been the type to overly praise actually said to me today that Leah is looking great! What a nice thing to hear! I love her PT but she makes me a little more worry some then her OT, because she never gives me a clear answer to how Leah is doing, but not today!

Hopefully the cast will stay on until Monday, when we will remove it and cast again for another week! I see the cast is already slipping, so who knows if my sneaky little girl will be able to get it off!!

Wednesday, October 8, 2008

Preschool, Already!?

Yesterday, I went to look at a preschool for Leah. Yeah, she just turned 1 and won't be going to preschool until next year, but I have to sign her up a year in advance at one place! It's crazy, but Leah will be going to a private Jewish school and they fill up fast!! So, yesterday I went to observe. I have a hard time picturing her old enough to be going to school, but the school was cute. I'm being overly critical about it, because I was a preschool teacher! I have another school to look at before I make my decision. Question for those of you who have looked into schools or daycare...what were some of your concerns when sending your child? I asked the director of the program what they do to accommodate special needs kids and I told her that Leah was mild special needs, but that there are certain things that she will need help with. Obviously, I don't know what Leah will be doing in a year so it was hard to describe to her what I meant. I can only hope that her fine motor skills will improve, but what I told her was that things like placing beads on a string or other two handed activities are going to be a little more difficult for her. She said it doesn't sound like it should be an issue, which is good. Mind you this is not a huge preschool, it's one classroom, 3 teachers and about 13 kids. It's 2.5 hours a day, 2 days a week. So, her skills with special needs children are probably not as good as a bigger more accredited school. I have a lot to think about and I just can't get over that I have to think about it now!!! Leah is still a baby!!!

In other news, Leah had a speech re-evaluation yesterday. Well, Leah didn't because she slept through the whole thing, but I covered everything with the ST without her. I'm so glad I trusted my gut and got her re-evaluated, I really didn't trust the first ST. The first therapist said that Leah needed speech therapy weekly, while I would have been ok with it, I just didn't think that was the case! The therapist that came yesterday said that Leah does not need speech therapy and in fact thinks she is a bit more advanced in her speech then she should be! I knew this was going to be the case because really in the past month Leah's language has exploded! She talks all day long. She has a vocabulary of about 7 words. My biggest concern was that she wasn't saying Mama or and "M" sounds, the ST said to just keep working with her and it will come. Thank God! I'm so glad that Leah can finally catch a break! The speech therapist will come back to check on her in 3 months!

The casting is going well, Leah is still un-phased. I have noticed that her sleep is a little bit more interrupted at night, but she is still sleeping well. She wakes up, wants me to pick her up and she falls asleep on my chest then I put her down and that's it. Right now that's probably once a night, she was not waking at all before the cast. I have to admit that I love when she falls asleep on me, it's just so special. That's probably the one reason why I don't mind that she is waking up!

I have seen so much more usage of lefty lately. It's amazing! She is really trying hard to use it and in general I just see her looking over at it, which is awesome!! Like I've mentioned a million times, Leah has a huge issue with awareness, so just looking at her hand is amazing! This morning we went to the grocery store and Leah's pacifier fell out of her mouth and onto the seat of the shopping cart (on the cart cover of course!)and on to her right side, she wanted it back in her mouth and I watched her take her left hand and put it over the paci to try to pick it up. She still doesn't have the grasp, but the mere fact that she reached over to her right side with her left and tried to grab it is just unbelievable!! I'm so excited about seeing how much more awareness and ability to use that hand she is going to get over the next couple weeks! Awesome, just awesome!!!!

Monday, October 6, 2008

A New Day, A New Cast!

Today Leah got her new cast, this one will be on until next Monday. She did really well when the cast was being placed on. She cried a bit but nothing too bad! The placement of this cast is much better then the first, they said she shouldn't be able to wiggle out of it! Again, I'm so amazed that it doesn't effect her mood having the cast on. She's such a good girl!

I had a total emotional breakdown with Leah's OT, today. I knew it was coming and truthfully, I knew she was the only one who was going to be able to bring me back to being in a good place. I mentioned in a previous post that I felt like Leah was really worse then I thought, and I've come to the conclusion that this is not the case. I think the fact that I was seeing so much of how behind she is on her left side was really effecting me. After my complete emotional breakdown, I vowed to try my hardest to focus on the positive, and all the amazing things Leah is doing, instead of focusing on what she is not doing. I need to remember that Leah is fantastic and she's going to be just fine! Have I ever mentioned that Leah has the best OT?? :) Not only is she an OT for Leah, but she's a therapist for me! Thank God for her!

Sunday, October 5, 2008

Casting?? --Day 3

The latest update is...





Avi went in this morning after Leah's nap only to find that she had found a way out of the cast! We knew this was a possiblity, but I was hoping it would happen after our OT saw her!! I right away called her so upset--she said it was fine and it would save us a step tomorrow, in that we won't have to cut it off! I have to say, that with in the 20 minutes that Leah has been awake she has been using both hands more then she ever has before!! Awesome! That gives me such hope that we are doing the right thing! Well, tomorrow we will get a new cast--maybe they will get it on right this time!?!



Saturday, October 4, 2008

Casting-Day 2

I have to admit that I'm almost shocked at how well Leah is reacting to the cast. She has not once "complained" about it being on. She goes about her business like nothing is different. I'm so impressed with her! Today, was a great day. I saw a lot more focused movements with lefty, especially while playing. She still gravitates into using her right hand, even while casted! For awhile this evening we playing with her pop up toy (you know, the one where there are 5 animals and you push a button or pull a lever and they pop up), she was doing great pushing the animals down after I popped them up. Her movements were very thought out and she loved getting the praise when she closed them! Eating is still very challenging, but I can see small improvements there too. She is trying to grab onto the food and once I place it in her hand she is doing nicely bringing it to her mouth. Overall, I'm happy to say that things are going well. I'd still like to see her a little more aware of her left hand, but either way she is doing great! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Today, I've had a lot of time to think about things and I thought a lot about Leah and the cast. I keep having this overwhelmed feeling, this feeling like I want to call Lisa and tell her I want the cast off. For awhile, I couldn't place why I was having these feelings. I mean, Leah is doing great, she is happy and acting herself. She is sleeping well and eating during the day. So, why do I feel overwhelmed?! Well, I came to the realization, that it's not that I want the cast off, in fact it's not really the cast I have a problem with. It's the fact that now, I'm really seeing how far behind Leah is on her left side. I always knew she was behind, I knew things were harder for her, but I can see it all the time right now . It's like it's staring me in the face. This probably sounds stupid, but I can't shake these feelings that I've been lying to myself. How could I think she was actually better then she is? I mean, everyone has told me she is mild, but really is she? I know Leah is doing great things and that she is still so young and mold able. I think this casting process is drawing out some real raw emotions for me. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Here's the video of Leah right after she got casted.
video

Friday, October 3, 2008

Casting: Day 1




Well, this morning I woke up after a wonderful nights sleep! Yep, Leah slept through the night perfectly! I still can't believe it! I was so worried about sleep and she was wonderful!

Leah woke up and ate breakfast. I've decided that at meal times we will do one food that is for lefty, that Mommy won't give in and feed her! To make sure she is getting enough food, I will spoon feed her something on the side. This is the only time Leah has been frustrated, thus far. She loves to eat and this is something hard for her. Anyway, this morning, a waffle was her lefty food and she did great with it. I helped her along and she did very nicely. I spoon fed her a bowl of cereal and milk.

I also have to say, Leah's OT is just fantastic! She is away on a conference today and she called me first thing in the morning to check on us! She's just so sweet and caring, we are so fortunate to have her in our life!

After breakfast Leah got a short nap and then Nadine, our PT, came over. She checked Leah's cast and said it looked better then she expected. Like I mentioned yesterday, the cast was not placed on properly because of my squirmy little girl. There is a large fear that Leah will wiggle out of the cast, which we are hoping is not going to be the cast. I am constantly reaching my hand in to grab her fingers and adjust the cast. It's very loose. So, Nadine re-adjusted the cast and did a bit of OT work with her, but since it is not her forte, she did more PT. Leah is doing great at crawling and pulling up still. This morning she showed off her cruising skills. Nadine is still concerned about her knee locking and we will hopefully try some knesio tape next week. Every week, I pray that she is going to tell me that it is looking better, but that hasn't been the case yet. She was very impressed that Leah has been standing on her own for about 30-45 seconds. Leah didn't show that off today though, I mean, I don't blame her--her balance is pretty out of whack! All in all a good session.

I do see a bit more use of lefty, when she is thinking about it or highly motivated. Right now, in regular play she is very content to bang her cast on everything, including me, OUCH! I keep trying to not get discouraged and I keep telling myself that this is just the beginning. I guess I had other thoughts on how this was going to go. I didn't expect the cast was going to "cure" her, but I thought I would see a little bit more focused movements. When I spoke to Lisa, our OT, this morning, she said that her goal was not focused movements at this point and that what she would like to see is Leah being more aware of lefty. Everyday, I guess a little more at a time is a good thing.

I think Leah's biggest frustration is food. She is a grazer, loves to snack all day long and she really can't do that with the cast on. She just doesn't have the ability yet to grasp a cracker and bring it to her mouth on her own. This makes it hard for her to snack in her favorite places, the car, the shopping cart at the store and in general just playing around. I keep worrying that she is hungry, and we have been doing more scheduled snacks during the day. She doesn't nurse during the day anymore and she hates whole milk (we only started last week), she usually will snack on a piece of cheese, so I'm trying to load her up with yogurts and cottage cheese at meal times.

Blog spot was not letting me upload the videos from yesterday, I will try again later.

Thursday, October 2, 2008

Casting: The first few hours.

After paitently waiting all day, at 3:00pm we went to the center to have Leah's cast put on. I cried on and off all day, on the way to the center, when we got to the center, and during the casting! Leah was in a great mood, she sat on my lap as our OT worked with the casting tech to prep her. We put in Blue's Clues--we learned today that she really doesn't care for it! She watched and was great for the entire them they were prepping her, this took about 10 minutes. After that she completley lost interest in Blue's Clues and she had enough of being restrained. She was bawling the rest of the time, only about 15 more minutes. It was very hard for me to hold her down and because of this the cast was not placed on how they would have liked. They said that because she was moving so much that the cast is not as tight as they wanted. The casting tech fully expects that Leah will be able to wiggle out of it over the weekend. Not the kind of news I wanted to hear! After the cast was put on, we took Leah into another room so that her OT, PT and the casting tech could watch her. She was again in a great mood! She started crawling right away, which was great. She also wanted to pull up so badly, which was hard for her, but she found a way to do it. Right away we saw he playing a little more with lefty. We tried to give her a snack, but she still has a very hard time grabbing and bringing that hand to her mouth. Once the food was placed in her hand she needed only a tiny bit of help to turn her wrist to get it into her mouth. One of my main fears with the casting was eating, I know this is something that is very difficult for Leah. She was overall in a fantastic mood and the cast was not bothering her a bit. When we got home, we played for awhile and I must say I was getting a bit discouraged. I feel like everything I have read about CIMT the child starts right away using their effected hand and doing all these amazing things, this was not the case tonight with Leah. She was very happy to just bang the cast around and crawl around. I know it had only been a short period of time and we have all weekend to really work on things. Leah ate dinner nicely. I gave her some green beans to practice placing in her hand and bring it to her mouth. Leah has a terrible time suppinating her hand making feeding herself very difficult. I loved that she did try to grab the green beans from my hand, but she also tried to cheat and get them with her mouth! Little stinker! After dinner, I noticed Leah was getting very sleepy. I decided to put her in the stroller and walk up the block. I felt like the fresh air would be good for her, we came home, nursed and now she is in bed. I watched her for a little while on the video moniter and I saw she was frustrated that she couldn't pull up in her crib, but it looks like now she is sleeping. I was also very nervous about putting her in the crib with the hard cast. I will go up and check on her shortly, to make sure she is sleeping in an ok position. Tomorrow, we have our PT coming. She will act like an OT as well, because our OT has a confrence tomorrow. Our OT will come on Sunday. All in all, I'm feeling ok about the process. I'm still sad that she has to go through this, but I can only hope that it brings good things for Leah. I'm so unbelieveably relieved that she is not upset or frustrated with it. I'm having a total issue with clothing for her! It's cold out here now and nothing with long sleeves fits over the cast! For her pajamas I cut the left sleeve off of them so that it would fit! I guess I just totally was overwhelmed with everything else that I didn't even think about dressing her! During the casting. After, playing with her PT,Nadine.

Wednesday, October 1, 2008

Tomorrow is the day

I can't believe tomorrow is almost here! These past few days I have kept pretty busy and have rarely thought about the casting. I mostly think about it at night, right before I fall asleep, I lay there just overtaken with emotion. I let the tears run down my face as I pray to God for guidance, I pray that this process helps Leah and that all my fears will be swept away shortly after having the cast placed on. I pray that Leah doesn't remember these struggles, but that either way she always powers on and never gives up. I believe that God is good and that He won't give us more then we can handle. I believe that Avi and I are strong enough to handle this, but most importantly I believe Leah is strong enough to handle this. Please keep Leah in your thoughts as we go through this process and if you pray, please add in a little prayer for Leah. :)

Because I don't know that I'll have time to post tomorrow before the casting, I'd like to make a list of things Leah can do now. Just a week or two ago, I asked Keira (See Keira's Blog, on the right side of the blog) what advice she has for us and she said document everything. So, I plan on writing daily here and coming back in the future to check Leah's progress. Some of the things below are going to be obvious, but I still want to document them either way.

Pre-Casting, what can Leah do?

*Sit without support--excellent balance.
*Transition to sit on right side (90% of the time)
*Transition to sit on left side (10% of the time)
*Four-point Crawl
*Play in four point with right hand, while being help up by left
*Pull to standing
*Play in standing with right, while being help up by left
*Pull to stand on flat surfaces (i.e. refrigerator)
*Walk behind a push toy-very slowly
*Cruise- Slow, easier to go to the right
*Stand on own for approx. 45 seconds
*Eat by herself, with right hand
*Wave, blow kisses, point,"talk on the phone", with right hand
*Uses left hand in an assistance manner when needed (This is new and very exciting!)
*In the past week has tried to pass something over to left hand(also new and exciting!)
*Will put food to her mouth with left hand, if placed in hand. Needs help with suppination

I will hopefully update tomorrow night. The cast goes on at 3:00pm Central time! Wish us luck!