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