Things I've Learned Over The Past Year...
1) That life throws you curves, just when you aren't expecting it. These curves are not always bad...but sometimes throw you off for a bit!
2) That kids can have strokes.
3) That there is this whole other world of parents of children who have had strokes.
4) That Leah is an amazing, persistent, feisty little girl.
5) I learned what Occupational Therapy was!
6) I've learned about the brain, like I've never thought I would. I learned about Neurologists, Hematologists, and Physiatrists.
7) I've learned about splints, braces, casting, and botox.
8) I've learned that Leah is going to be ok. In the beginning 'Hemiparesis' was such a scary thing. I would lay awake crying at night about her future. Well, I still have my sad and scared moments, I really can see how amazing Leah is going to do in her life.
9) I've learned that friends don't have to be physically near, or that you don't even have to have met them in real life. My Internet friends have been one of the most amazing sources of stability in my life through-out this past year. I would not have been half as calm as I am without you all.
10) I've learned that sometimes my heart hurts for Leah, but more times my heart beams with happiness and pride for her.
11)I've learned that I'm a lot stronger then I thought.
12)I've learned that I have the most amazing husband and family, who have cried with me and laughed with me more this year then any year before.
13) I've learned that I'm the luckiest girl in the world.
I'm sure there is more that I've learned that I'm forgetting, but I just wanted to thank everyone for a WONDERFUL year!
I hope everyone has a HAPPY NEW YEAR!!!
Here's to an amazing 2009!
Wednesday, December 31, 2008
Posted by Amanda at 5:00 PM
Monday, December 29, 2008
Last Friday, I needed to return something to Borders and while I was there I noticed a large section with children's books. I went over just to see what they had and the books were greatly discounted! I bought Leah about 5 books for $5 each, this was off of the list price as high as $18. I thought it was a good deal and you can't have too many books!
When I was searching through the books I landed on one called "I Knew You Could" By Craig Dorfman (http://www.amazon.com/Knew-You-Could-Craig-Dorfman/dp/0448431483). I didn't read it until I got home, but something about the title drew me in. On the front of the book is a train, I later learned that this book is part of "The Little Engine That Could" series. Anyway, I found myself reading the book to Leah that night with tears in my eyes. I imagined us 5 years from now reading that book and it having so much more meaning. It's a book to 'celebrate all the stops' in your life. Here are a few excerpts from the book. It's about a train who needs to choose his track in life and on that track he sees different things.
I highly recommend it!
"I knew you could! And you knew it, too--
That you'd come out on top after all you've been through.
And from here you'll go farther and see brand-new sights.
You'll face brand-new hills that rise to new heights...
...Sometimes you'll look up and see planes in the sky.
And you'll think to yourself, "I wish I could fly."
The cars on the road will seem quick and free--
You'll feel stuck on your track and think, "I wish that were me."...
...But the plane might wish he could get out of the air.
Saying, "I wish I could travel like that train down there."...
...Don't worry about not being a car or a plane,
Just enjoy the trip you'll take as a train...
...On the days that you're sad and feel you can't go,
Speak up and ask a friend for a tow...
...Try to remember the world is so wide,
Full of all kinds of people with their own trains to ride.
Just stay true to yourself as you travel your track,
With no second-guessing and no looking back...
...When belief in yourself doesn't feel quite so pure,
And your "I think I can" doesn't quite sound so sure,...
...That's when to push and to strive and to strain,
To show the world you're not a giving-up train.
And you're wise if you know that doing your best
Means that sometimes you should slow down and rest...
...There's more to life that you'll learn as you go,
Because figuring things out on your own helps you grow.
Just trust in yourself, and you'll climb every hill.
Say, "I think I can" and you know what?
Posted by Amanda at 8:40 PM
Friday, December 26, 2008
While she still needs a bit more time to get her balance, here are some little baby steps!!! She's almost impossible to video tape, because she always wants to grab the camera!!!
Thank You everyone who gave me some insight on my last post. I do think we are going to purchase this brace and have the state purchase the next one.
Posted by Amanda at 3:25 PM
Tuesday, December 23, 2008
I'm so frustrated right now.
We have been going through Early Intervention for all of Leah's therapy. Our insurance ran out after $3000, and anyone with a child in therapy knows that $3000 is not a lot, so we decided to use the birth-three state program. It has been working out really well for us. Through the state program we are in-clinic once a week and at home twice a week. We pay a minimum fee--which is so helpful!
So, with that said, we have been really getting moving on getting Leah's brace. Our PT assumed that since we had been going through EI, that we would do the same with the brace. UGH, UGH, and UGH! Going through the state to get the brace would mean waiting 3-4 months from NOW! We have been discussing this brace for over a month and I've had the script for well over a month! I had no idea that it was going to take that long, or I would have pushed our PT to get the ball moving a bit sooner! To top it off our EI case worker is as slow as molasses and she does NOT return calls--thankfully she is leaving and I will have a new case worker after the first of the year (pray she's halfway decent!). Ok, so now what? We get Leah casted for the brace, the PT sends off the paper work to the state, waits for the state, sends off the brace information to the company, company makes the brace and sends it back to us. Voila! Uhhh...not so much, the state takes forever to get back to us to authorize the brace! It's so frustrating. I've worked myself up to get this brace and now...we wait?
I asked the PT who came today, how long it would take if we just pay for the brace ourselves? She said 2-3 weeks!! That is a world of difference! How can I knowingly sit and wait 3-4 months when Leah could be wearing it in a matter of weeks? So, the kicker is the price--somewhere in the $350-$400 range. That's a lot of money! Especially, because this brace will only last for about 6-9 months!
I thought about going through the insurance company, so I gave them a call and they said that they would cover 80%, once our deductible is met. Well, we have not met our deductible--so they cover nothing.
I think what we will do, is buy this brace and then in about 6 months go through the state. Depending on what Leah needs, hopefully we can start the process early enough so that there won't be much (if any) time without a brace.
I just don't understand why things like this aren't a little easier? I mean thankfully, Leah doesn't NEED the brace immediately. Yes, she needs it, yes it will definitely help her...but it's not an emergency--know what I mean?
Those of you who have gotten braces for your children, what did you do? Did the state cover it? Insurance? Or did you bite the bullet, like us, and pay out of pocket?
I just can't wait 3-4 months, knowing that we could have had it sooner.
Posted by Amanda at 10:57 PM
Leah just LOVES my little sister!! She gets so excited when Aunt Shelby comes over to play...here is a great video of them playing together!
Please excuse the mess...that's what happens when you are inside all day!!
Posted by Amanda at 12:18 PM
Monday, December 22, 2008
Last night we celebrated the first night of Hanukkah! Leah got a a bunch of new toys! Which she loved! Avi and I also did quite well--thanks to our family! We are so excited that we got tickets to WICKED! It's ending soon here and I was sad that we wouldn't be able to see it, but we are going! YAY!
We celebrated during the day with our large family holiday party--here at our house! Then we went to light our menorahs at our friends house.
It was a wonderful day! It was great to have a day to be able to stop and reflect on how good our lives are! We have great, unbelievable, wonderful family and really fantastic friends. Yesterday, was just a day of good things!
Here are some pictures of Leah's second Hanukkah!
Leah and her new baby and new Elmo couch!
Leah and her Daddy lighting her menorah!
Friends, lighting and singing
All our menorahs
To top off the evening, Leah showed off her fancy moves by taking some steps for our friends. It was very exciting!
HAPPY HOLIDAYS EVERYONE!!!!
Posted by Amanda at 9:54 AM
Tuesday, December 16, 2008
Yesterday, I had a play date with a friend. She brought her 2.5 year old little boy over to my house to hang out with Leah and I. We chatted as the little ones played, ok...well the little boy played and Leah watched in amazement at how fast he could destroy all her toys! Anyway, as we were talking I looked down to watch Leah play and while she was playing I watched her stand up by herself in the middle of the floor! I of course started screaming, 'oh my gosh, look at her this is amazing!' I went on to tell my friend (who by the way does know about Leah's hemi) that this was incredible and that Leah has only done this once before. As with everything new Leah does, I think to myself how I can't wait to tell Avi, My Mom, Lisa and/or Nadine (OT and PT), and my blogging friends, yes I think about it in that order! :) So, there I am still freaking out at this absolutely amazing thing Leah just did and my friend looks at me and says 'wow that's great.' I wanted to look at her and scream, YES THIS IS GREAT, but REALLY--DO YOU GET HOW GREAT IT IS!!! Do you have any idea how many times in the past 10 months I wondered if and when I'd get to see her do that? Do you have any idea how hard it is for her to do something so simple for your child? Do you get it, really do you?
And the answer is no. I can't expect her to get it, she has a wonderfully (not that not typical children aren't wonderful) typical little boy. They've never had to worry about when a milestone would happen. Would my child be late, would they be able to do it? Their little boy just did it, they got excited and said isn't that great. She didn't need to shout to the world. So, I really can't expect her to get it--she doesn't need too.
When talking to my friends I often have to take a step back. I realize that they don't know how to care about Leah doing something new the way I do. I love my friends and think that they are wonderful people, but they really don't get it. They don't get that this is a lifelong diagnosis. Just the other day, I had one of my friends come up to me and ask me "how's Leah's arm"? That's all it is to them, it's just her arm. Yet, we all know that it's so much more then just that. It's hard for me to realize when I speak to them that they don't fully get it. I can't blame them, before I was in the situation I most likely wouldn't have gotten it either and I do appreciate any of their comments. Even if I'd rather them jump up and down with me, I do know that they are heartfelt and sincere.
That's why I'm so thankful to you blogging friends. You all get it. You get it so much more then anyone could imagine. I'm so thankful for you all--each and every one of you and I'm so thankful for your little ones. They make me smile everyday! Your words are always there to pick me up when I've fallen or to cheer with me when I cheer. So blogging friends, really from the bottom of my heart-
Thank You For Always Getting It.
Posted by Amanda at 9:59 PM
Friday, December 12, 2008
As a mother of a special needs child, I often feel like I should never put limits on Leah, in turn I would never want a doctor or therapist to tell me what they think Leah won't be able to do or when she will do something.
But sometimes, just sometimes, I set these personal goals for Leah. Even though she is 14 months old and wouldn't understand anything I say, I never tell her these goals. I keep them to myself or share them with my husband, but otherwise they are my own private goals for Leah. If she doesn't meet them, it's perfectly fine--but I like to have them in mind!
With that said, One of these goals I "set" for Leah was 4 point crawling by her first birthday. Check! She 4 point crawled around 10 months!
The next one was walking by December. Well, we are already well into December...but let me tell you she will be walking VERY soon!
Leah took 5 (YES! 5!) independent steps today during our PT session! I of course cried my eyes out, watching my sweet little girl take steps towards me was one of the highlights of my life!
Leah's PT says it's only a matter of time, she just needs to slow down and find her balance before she takes off.
It's amazing!!! I'm beyond excited!
I have so much more to update, I will try to get to it over the weekend!!
Posted by Amanda at 1:42 PM
Tuesday, December 2, 2008
Well, things sure have been crazy at our house lately!
Both Avi's laptop and my laptop decided to not work for us! Ok....the truth is I accidentally dropped Avi's laptop...ekkk and it completely died. So, we ended up getting him a new laptop. Mine on the other hand needs more RAM--basically I have too many pictures on it! So, until we get more RAM, I'm going to have to try and steal Avi's laptop to blog--although, considering what happened with his last one he's not so quick to give it up!
As for Leah, she's doing great! She's starting to trust her legs a bit more and almost testing them to make sure she is safe. She's still really letting go a lot more! We didn't have PT last week and are missing this week, so I have not even been able to update our PT! As for Leah's brace...I'm hoping our EI service coordinator is working on getting the paper work to go through, so we can Leah's brace. Early Intervention is really a wonderful organization, but geez sometimes they are so incredibly slow! Our coordinator has the hardest time calling back, I understand she is busy, but a return call every once in awhile would be nice!
We have also recently decided to cut down OT to once a week. You'd think that would mean that Leah is doing so unbelievably that she only needs it once a week...WRONG! We are cutting it down because Leah is completely un-interested in OT. She doesn't want to be pinned down, she doesn't want to be forced into using lefty, she just wants to go, go, go. We've been doing twice a week OT for awhile now and with the casting our OT sessions have been pretty intense. So, we decided that we need to just take a break for a bit and just have our OT come here once a week. I think this is only for the next couple of weeks and then we'll start back up at twice a week again. OT has become such a struggle that I think we were all feeling completely overwhelmed with it. I'm hoping that once Leah starts walking things will be a bit easier, but for some reason I just can't imagine it being. I think only when she really understands verbal commands that is when she'll sit through therapy...that and lots of bribes! :)
I think that's about it! We will be going to New York this weekend, so I can't promise that I'll get to blog! But, keep on checking and I'll be back soon!
Posted by Amanda at 8:41 PM
Monday, November 24, 2008
Recently Leah has been getting a bit more adventurous in her mobility. She is doing awesome cruising around and walking with her push toys. She LOVES to walk holding our hands!
While in standing she has started to let go a bit more. She was originally letting go and plopping on her butt. Now, she will let go and stand for about 30 seconds. She thinks it's the funniest thing ever!
Today, she even got to standing by herself! I'm sure it was sort of a fluke, but I'm also sure I'm going to start seeing it more and more. It was very exciting!
I'm trying to not think too much about walking soon, but I'd like to think we are not too far off!
Posted by Amanda at 7:46 PM
Thursday, November 20, 2008
Sunday, November 16, 2008
Leah's language has really taken off lately! She has between 6-8 words that she says on a consistent basis. Most of these words are "B" sounding words;ball, bubbles, Bar(for Barney--ekk!), Abba(what she calls her Daddy). Well, she has started to just babble and talk about everything. She says "Hi" when you pick up the phone and she'll also say "who's there"! So, cute!
Whenever Leah has therapy, I'm always telling her which therapist we are seeing and if we are going to the clinic or they are coming here. We see Lisa, Leah's OT, twice a week--so I feel like I'm always talking about her. I'll say, we are going to go see Lisa, or guess who's coming Lisa! Leah always looks around for Lisa, whenever I say her name. So, last week we had OT here and I was telling Leah that Lisa was coming...well, Leah looks at me and goes YEEE-TAHHHH. It was clear as day that she had said Lisa. The rest of the morning she crawled around saying yee-tah!! It was terribly cute!! I STILL can't believe she says Lisa before she says Mama!
I've decided she's waiting to make saying Mama extra special--I think she's going to walk and say Mama on the same day! Wouldn't that be awesome!?!
Posted by Amanda at 11:29 AM
Thursday, November 13, 2008
We are back from our appointment! It went perfectly, I couldn't have asked for anything better.
She was very pleased with what Leah was doing and didn't even need to see the videos that I brought. We put Leah's bi-valved cast on there and she saw right away Leah used her hand. It was great.
Leah's OT and PT wrote her detailed emails, so I didn't have to tell her much! Dr. Gaebler did say she agrees with Nadine (PT) that we need to get a brace on her right away. She wrote a script so we can move forward with that. She said she thinks a hinged AFO would be the best fit for Leah right now. She said it would help the most with her hyper extension. She also said that we might want to get her something different for at night, she said she will discuss with Nadine and have her get back to me.
This is the brace we are most likely getting, except it will be hinged. (If you checked earlier, yes it is different, I re-read the script and realized she wanted the DAFO 3.5 for Leah.)It freaks me out a bit, but then I think about how little Leah is and how little the brace will be and I kind of think it will be cute! I mean, listen, no one wants there child to wear a brace or need something like it, but if she going to have to have one then I might as well embrace it!
She was very pleased with the bi-valved cast. The schedule that Lisa (OT) and I made was that it would be on one hour in the morning and one hour in the afternoon. Obviously, if I'm feeling up to more to do it! Dr. Gaebler insisted that one hour at a time is too long, because most kids get frustrated. Well, I politely corrected her and told her that one hour is not too long for Leah. She could care less if the cast is on. So, she told me that and hour is great then!
We talked a bit about the MMR--which she is all for and about a few other things...all good! The last thing she said to us is that her hope is that the next time we see her (in April) that Leah is walking. I told her I'm pretty sure she will be!
Posted by Amanda at 2:54 PM
Monday, November 10, 2008
This Thursday, we are going to see Leah's physiatrist (rehab doctor). I'm really looking forward to seeing her again and I'm even more looking forward to showing off Leah's progress! I have my list of questions that I have been working on and I'm armed and ready to discuss some pretty serious things..i.e. The b-b-brace, The MMR and CIMT among other things. Today in OT, I decided to take videos of Leah with her bi-valved cast on. I took a bunch of videos, because I know once we are at the appointment and I'm talking about how Leah can do something, she won't do it. Of course she won't do it! Kids never "perform" when you want them too! It's like when we are in the grocery store, the check out lady always waves to Leah, and I say "Leah, can you say bye bye" (which she knows full well means to wave bye bye), but nooo...only when we are out the door long gone from the sales lady does she wave bye bye! So, we took videos and lots of them! I thought I would post them here too...
Video 1--Here Lisa (OT) was trying to show how Leah's range of motion has increased. You can see how she reaches up high to get the button! The toy is incredibly motivating for Leah and incredibly annoying for everyone else in the room! :)
Video 2-Here, you can see that she really wants to grab the puppies but just doesn't have the grasp yet. Lisa tried to place it in Leah's hand, but Leah is now having trouble closing her hand around objects. She's either very fisted or too relaxed--and she goes to both extremes in either of those positions. Also, at the end you can see that she got silly and tried to use her mouth!
Video 3-Here you can see some focused movements in standing, but really she was much more interested in dancing!
Video 4-This video was taken at the end of our hour long session, you can tell that Leah wasn't into participating as much. She does manage to reach up to get the balls off of the mirror a couple times though.
To end our day today, Leah and I went to the produce store near our house. There is always a very friendly lady who works there and I always go to her lane. While in the lane she was talking to Leah and smiling at her. The sales lady in the next check out lane looked over and asked Leah for a high five. She was on Leah's left side, I know Leah knows how to do high fives with her right hand, but to my surprise she lifted lefty up and slapped her a high five! I think I yelled out a pretty loud cheer when she did that! The lady probably thought I was crazy! It's just amazing to me that without prompting, without restraint she thought to use lefty. It makes me so incredibly happy.
Posted by Amanda at 8:31 PM
Sunday, November 9, 2008
I've debated posting again this week, because I didn't want to get repetitive. My last few posts have been about CIMT not working out for us and the only thing I could think to post about was that.
So, I'll give a brief update--On Tuesday, Leah got the cast removed. It was the first time in this whole casting experience that she hadn't gotten out of it and had to have it cut off. Well, from the first sound of the "saw" she freaked out and was screaming. It took about 10 minutes total to get the cast off, which meant 10 minutes of a screaming 13 month old. It was intense. Anyway, the cast came off and we decided to bi-valve this one as well. Now, I have two bi-valved casts...I like the first one better, it's much easier to put on. We have decided to try fully casting again when Leah is 18 months old. I feel really good about this. Ok, I'm getting repetitive again, but I just really want to emphasize the fact that overall this was a GOOD experience. The things Leah is doing with her effected hand are amazing! I am constantly impressed when watching her, her overall movements are thought-out and focused. It's wonderful to watch the carry-over, when the cast is removed, at the end of the day--that's the most important part, that she is making the connections. Leah has gone from having virtually no use and absolutely no awareness of her left hand to incorporating it and using it about 50% of the time. It's really wonderful.
In other news, this week the weather was fantastic! 70's in November!! Needless to say, Leah and I were out everyday soaking up the sunny days!! It was gorgeous out. It has since turned cold and wintery...:(
Here are some pictures from playing outside...
Posted by Amanda at 9:20 AM
Monday, November 3, 2008
Today, Leah was recasted...while the casting went quite smoothly, the cast that is on is not fitting right, again. This is our second casting specialist and our third time fully casting. It's officially not the right time for Leah to be fully casted. Our OT thinks it's because she is still so little, 13 months and 18(ish)lbs. Right now, Leah has the cast on, but we are pretty sure that tomorrow it will be taken off. It's come to a point where is it unsafe for her to have it on. She knows how to slip her little fingers out of it and then her hand will get caught--which could lead to pressure ulcers or loss of circulation. We don't want those things to happen, so, for now we will stick with the removable cast. We have been seeing really great results with it anyway. I am giving up hope of fully casting, for now. Hopefully we will re-visit it again in a couple months.
I still think Constraint Induced Movement Therapy is absolutely amazing and Leah has far surpassed our goal for her. Initially all we wanted CIMT to do was to increase awareness, she has not only increased her awareness but is also more actively using that hand. Today, for the very first time ever she grabbed a rice cake with her left hand, I mean seriously that is AMAZING--AH! SHE GRABBED THE RICE CAKE...A-MAZING!
With the rice cake in her hand...
Trying to get it in her mouth, she needs a little help turning her wrist.
Success! This rice cake is delicious!
Posted by Amanda at 10:30 PM
Sunday, November 2, 2008
Tomorrow we re-cast at 10:00am! I'm nervous about it but I love the result that we have been getting! Let's hope Leah doesn't get out of this one! She really is houdini, she has even learned how to get out of the removable cast--little stinker!! She also managed to rip off the knesio tape that was on the back of her knee, it didn't even last 24 hours! My silly girl! I'm hoping tomorrow goes smoothly and that the new casting specialist is quick and gets the cast on right!
Posted by Amanda at 9:11 PM
Monday, October 27, 2008
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.
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!
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...
Posted by Amanda at 7:19 PM
Thursday, October 23, 2008
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...
Posted by Amanda at 9:18 PM
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
Posted by Amanda at 2:28 PM
Wednesday, October 15, 2008
...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.
Posted by Amanda at 8:32 PM
Friday, October 10, 2008
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!!
Posted by Amanda at 3:39 PM
Wednesday, October 8, 2008
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!!!!
Posted by Amanda at 10:17 AM
Monday, October 6, 2008
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!
Posted by Amanda at 8:40 PM
Sunday, October 5, 2008
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
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.
Posted by Amanda at 9:01 PM
Friday, October 3, 2008
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.
Posted by Amanda at 5:25 PM
Thursday, October 2, 2008
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.
Posted by Amanda at 6:51 PM
Wednesday, October 1, 2008
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)
*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!
Posted by Amanda at 9:12 PM
Thursday, September 25, 2008
Tuesday, September 23, 2008
I have to say, I'm actually feeling ok about next week's casting for Leah. At times I still get overwhelmed by the thought of it all, but that comes rarely now. The biggest emotion I have is sadness. I find myself feeling so sad that Leah has to go through this. I see other kids and feel a twinge of jealousy for my baby. Jealousy really is a terrible thing. I haven't felt jealous or the "why me, why Leah" feelings in awhile. I thought I had moved past that, but constraint is pulling those emotions out again. These feelings pass very quickly, when I stop and remember that Leah is fine, heck she's more then fine--she's amazing!
Anyway, I know I didn't just sound like I'm ok, but really I am. I'm ok, because I know my girl and I know she's going to be ok too! So, one week from Leah's first birthday she will get her first, and I'm sure not her last, cast. This first cast will be on for a very short period of time, it goes on Thursday and comes off on Monday. The therapist and casting specialist will then check to make sure the positioning of the cast, how it was placed on and just it's overall safety. Depending on our thoughts, we will decided then to either cast fully (which I'm definitely leaning towards) or to bi-valve and make it removable. Either way, we will only do it one week at a time, then after a week the cast will be removed. At first, I was leary of the schedule, but I'm thinking this will probably work better for Leah. Her PT has never worked with anyone casted this young and not walking--she is very concerned about Leah losing what she has. So, doing this slow of a pace we can see how she is going to react. I'm assuming once she is walking we will do an even more intense casting. That's our story! Another step on this journey!
Posted by Amanda at 10:20 PM
Monday, September 22, 2008
(I'm on the left)
I bet you all were thinking I was going to say to Leah, nope--her birthday is Thursday!
Today, I am 23! Yeah, I know--I'm so young! No matter where I go, or who I am friends with I am always the youngest. I keep telling myself that one day I'm going to really enjoy that. :)
Have a great day everyone!!
Posted by Amanda at 10:11 AM
Tuesday, September 16, 2008
I've been thinking about Leah's Constraint Induced Movement Therapy and while I'm very excited to be doing it, I'm feeling even more apprehensive about it.
The casting date our OT has set, is right around the time of all the Jewish holidays. We take these holidays very seriously. I'm nervous about doing the casting and having the holidays at the same time. Leah's OT, said she would rather not see us put off casting by three weeks. I tend to agree with her, I think Leah is more then ready to be casted now. But at the same time, will three weeks really make that much difference? I need to know that I am going to be able to give Leah 100% of my time. We are not uping her therapies at all, so the CIMT is going to be done the majority at home. That means that I need to be focused on Leah all the time. I'm nervous that I'm not going to be able to handle the stress of preparing for the holidays and taking care of Leah. Our OT is out of town, otherwise I would be discussing with her and I will when she gets back on Thursday. I'm just feeling a bit overwhelmed by it all.
Get used to these posts for the next couple of weeks, until that cast is on--I'm going to continue to feel nervous. :)
Posted by Amanda at 9:31 PM
Friday, September 12, 2008
Just a quick post, because I'm so excited!!!
This past week Avi kept telling me that Leah was "walking" along the couch, I pretty much responded with something along the lines of "you're crazy". Just last week in PT, Nadine (PT), said to start working with her on cruising, but that it could take awhile. Well, in true Leah fashion, she was totally doing it!! I was playing with her this morning and all of the sudden I look over and she is cruising from one end of the couch to another!! WOO HOO!!!
A few minutes after that she found her balance and stood by herself for a good minute! She has been doing this all day!!
After her cruising episode, Leah had PT. I told Nadine about it and she tried to get Leah to do it again. Leah happily did! Nadine did notice she still is majorly locking her leg and for now is on her toes. She said not to get concerned about any of it yet, because she is still learning her way. Next week, we will try some knesio tape on the back of her knee to see if that helps the locking.
Just had to share--I really wasn't expecting her to start cruising yet...but hey, anything is possible!!!
This weekend is Leah's first birthday party, it's supposed to be outside. Of course, we are getting slammed with rain! I hope it goes well! How can it not? We will be celebrating 1 year of our sweet little girl! The best year of our lives!
(Side note, Leah's real bday is not until the 25th)
Posted by Amanda at 5:34 PM