OT meeting and Casting talk...

Today we met with Serena, the OT that the Physiatrist recommended, to talk about casting Leah. I was fortunate today that Avi was able to come with me, I was happy to have him there to see what we do at OT. After all of us talking, Serena, Lisa (OT), Avi and myself--we decided that we are not ready for Leah to be casted.
She is doing a nice job right now in her gross motors, that if we cast her too early she may "forget" how to do the things she is doing. For example, Leah just learned to transition to sitting if we were to cast her she would have no way of transitioning and could possibly loose what she has already! That alone was reason enough for us to decide against casting now. We will look into casting again in about 2 months, when Leah is 11 months old. For now, Serena and Lisa have some wonderful ideas of how we can get Leah to be more aware of lefty and about how to cast without really casting! We will be utilizing Leah's immobilizer much more now and we will even put socks over the immobilizer so she can't grab things with righty. She also was very impressed with Leah's movements. She said that her army crawling was good because 95% of the time she was able to get lefty out from underneath her. She also loved that Leah was activly pushing up on all fours!

I'm still all for casting and I am really looking forward to it. I think it will be great for Leah, just in a few months! As the Physiatrist said with every casting the hope is for them to improve mobility by 20%! That's awesome!


I feel confident that waiting to cast is is the right decision for us.

Picture Update!

Leah--9 Months...
A Cubs fan...

Her new sleep position...

Standing by herself...
One day, she's going to kill me for this... :)

Enjoy!!!

Physiatrist Appointment Today.

Well, today was the much anticipated appointment for Leah to see the Physiatrist, or rehab doctor.

It went really well. She had a lot of interesting information for me and I can tell she really knew what she was talking about. She definitly had a wonderful bed side manner and was really friendly.

We started the appointment off by discussing my concerns and discussing what I would like to see Leah doing. I told her that my biggest concern was the lack of awarness of "lefty" and that I would love to see her volentarily grabbing for things.

As she was asking me all these questions about her history, birth etc., Leah was dancing and clapping away! There was a medical student in the room also and I'm telling you Leah was in love with him. She was such a little flirt! She was making such eyes at him! It was adorable!

The Doctor, jumped right in and started talking to us about Constraint Induced Movement Therapy, CIMT or casting. For those of you who don't know what casting is, basically they cast Leah's good arm so that her weaker arm is forced into doing the work. Casting is said to increase mobility and awareness in the effected arm by 20%. The Doctor said she would love to see Leah casted earlier rather then later, which would mean that she would like it to be now!! I have to admit that this threw me for a loop; Our OT and I have discussed casting to great lengths and her opionion of it, is that it is wonderful. She is really pro-casting and thinks Leah will make a great candidate for it, but not until she is walking. Lisa (OT) says that if we cast before Leah is walking then it will interfere with her ability to crawl properly. I find it interesting that the Physiatrist said almost the complete opposite! She said if we wait until she is walking we could be losing the time that we have now. She said that four point crawling isn't always nessecary and that some kids never four point crawl. So, now I'm super confused!! I have thought about Leah getting casted early, but now that it is so close and such a possibility i'm feeling a bit freaked out. I have yet to speak the the OT about it and can't wait to hear what she says. The Rehab Doctor did give us the name of an OT who specializes in casting, she also happens to work at the same office as our current OT. The doctor wrote a referall for us to see this new OT, which I suppose will help us make our decision about casting now or later. Hopefully, we can meet with her next week.

The Physiatrist had really great things to say about Leah. She said that she sees a lot of use of both hands at midline. She also says that it is only a matter of time before Leah is pulling up all over things. I see it already--she loves to grab onto everything!!

As far as a brace on her leg, she did say that Leah will need something. Not surprising! She said right now she can't really tell what type of brace she might need, probably something to stop her from going onto her toes. She said it might be higher up to the knee at the beggining but should go lower after that. She also said that most hemi kids walk later then normal but before 2 years old.

All in all, the appointment went well and was very informative. It looks like we have some decisions to make. We will see her again in 5 months, when Leah is 14 months old.

From an Adult with Hemi...

I was sent this letter awhile ago and I just re-read it. I have such mixed feelings about reading it. It's a pretty intense letter. I do not know the author personally, I was forwarded it from someone else.

Hiya, I'm Jennifer, right hemi since birth...
Firstly I have to say hemiplegia is so frustrating, you have no idea. I can sit and sit just willing my right arm to reach to pick up a pencil I've dropped on the floor, and it feels like my arm is being purposely defiant, laughing at me trying so hard and having little success.When your children play they probably feel as I do, anger at their body for not doing as it’s told. They have no way to get across their feelings, particularly if they are too young to verbalize them or if they have learning difficulties, so anger is the only way they can get across the frustration and hurt they are feeling inside, the injustice of it all.They will realize in time that there isn't any rhyme or reason in the whole hemiplegia business. With your help they'll learn, just as I did, that there'll never be an answer to the question "why me?" and they'll accept that and carry on with their lives regardless. In the mean time - as silly as this seems - be grateful for their anger, it’s a means of communication, ok it’s not the best way to communicate but still it’s the best your children can do for now. They have anger so they have energy, they have the ability to think, to know, that hemiplegia is frustrating. If they were calm all the time, if hemiplegia didn't bother them, if they weren't concerned they can't run as fast or as far as their classmates etc. then they'd never try and they'd never want to reach their full potential.So you have to - somehow - encourage them, find a positive way for them to release their anger. Keep telling them its ok to be angry, you would too if your arm and leg were weak/hurting but anger is not productive and it certainly is not ok to bite etc. because it hurts, and hurting someone not a nice thing to do. I know you'll probably have tried that a million times already but keep saying it! Re-enforcing it will help it sink in. As they get older, tell them it’s not their fault, it’s nothing they've done, and they're not alone, you will always be there for them to talk and you love them more than anything in the world. You have to have the patience of a saint, but it'll be worth it. Anger will turn into tears but then they will calm down and peace will be restored.It will get easier, I promise.

A new appointment!

I got a call today from the Physiatrist, our appointment has been changed. It was originally October 6, then July 26 and now it's THIS THURSDAY!! I pray that it's nothing more and that I am able to handle whatever she tells me. Especially about the brace--which i'm sure you all know, i'm still having a hard time about!! I really need to get a grip!!
All in all, I'm looking forward to the appointment. I've heard such great things about this doctor that if nothing else it should be interesting what she tells me.

My Funny Girl

Right now Leah is at a stage where she is just too funny. The faces and sounds she makes crack us up! She loves to play peek-a-boo, she gets the biggest smile after she hides and comes up. It's such a joy to watch her grow and learn new things.
This week she learned to wave hi and bye. She waves to everything and everyone!

Also, I had mentioned in my previous post that Leah was transitioning from lying to sitting by herself. At the point when I blogged about it she had done it without help maybe three times. Three is enough for me--I know she can do it then. So, yesterday at OT, I told Lisa (OT) about it and the entire session I wanted Leah to show her. Of course, my funny girl would not show her, but today during PT she showed the therapist more then once! I was thrilled, I thought well this is it--typical Leah; she gets something, does it slowly then BAM she's doing it all the time. After therapy I put her in her crib for a nap and when she woke up I heard her playing around in the crib. I went in to check on her and there she was sitting up playing with her aqaurium on the side of her crib! I'm pretty sure I scared the daylights out of her, because I started screaming, jumping and cheering! I was so excited that she did it all by herself. It was a such a wonderful sight to see her sitting there--another milestone down!

She's doing it!!!

Leah officially can now transition from lying down to sitting!!! Yay!!

PT Evaluation

Today, my heart hurts.
Therapy went OK, for Leah; for me it was hard.
We had an evaluation by another PT, she was great. I now feel completly comfortable and confident that she is the PT that needs to be working with Leah. I don't know why I was so upset watching her though, the entire session I was fighting back tears. She said that Leah looks good, that she is definitly on the very mild side, but that she is really locking her leg. I knew this, which is why I don't know why it is upsetting me. I guess it was a reality check. The PT also said that she would not need to see Leah weekly, but would rather do every other week. I feel like now that PT will be a consistant thing that we are one step closer to the possiblity of a brace. I know that a brace is a very likely reality, so I don't know why it bothers me so much. I think that I put it so far in the back of my mind and at times like today it starts to make an appearance and I start to freak out. Everything else the PT said is fine and I thought I was ready for all of it. I guess in the end, it doesn't matter what I'm ready for, but rather what Leah is ready for. She definitly needs the PT, so that is what we will do.

I spent the rest of the OT session fighting the tears.

WOO HOO!!!!

I called the Physiatrist about 2 weeks ago and they told me the next available appointment was for October 6!! I was so upset! The Neuorologist and OT both told me this Doctor was the best available, but man I didn't think she would be booked solid 4 months in advance! It made me think--she really must be "that good." I knew I needed to get Leah in there!

Well, I just got a call from them and the Physiatrist opened a new clinic! They can see Leah on July 23!! Sure beats October!!!!

Internet

Boy, you only realize your addicted to something when you can't have it! We were without internet for awhile and I was going crazy! It's probably not good to be that dependent on something! :) Anyway, i'm back and i'll update shortly.

Ugh...

I don't even know where to start with this post.
I posted such a postive post yesterday about the PT, but after careful review--i've come to realize that it was not a positive session.
I wanted to like this new PT, but honestly the entire time she was here I felt like she was doing the EXACT same things we do in OT. I thought that I had mistaken what a PT does and wrote it off. Basically, the PT barely even looked at Leah's leg, she focused 95% of the session on her arm. We already have 2 OT sessions a week--I didn't think we needed to be doing the same things a third time. So, like I wrote yesterday the PT said really wonderful things about Leah's leg and how she barely even saw that it was affected. I knew this wasn't the truth, but because I assumed that she knew what she was doing I believed her. I know Leah's leg isn't nearly as bad as her arm--but to say that it is not affected at all is not true. When I told our therapist about it today, we decided that we need to get a second look. I don't want Leah to suffer and not be getting 100% out of PT. At the end of our PT session, the therapist said, "ok, see you next month", I was the one who had to ask for weekly sessions. I said something along the lines of, uh don't you think she is ready for more sessions, since she is mobile. The Pt was like, oh ok sure. I need someone that is going to give my baby her all and not just come around once a month. Leah doesn't need another person to focus on her arm, she needs help with her leg. I need a therapist that is going to show me what to do to help her, and this therapist didn't do that at all. I'm upset. This was our first EI experience and i'm just not happy with her. Our OT has someone she can bring in to evalute Leah. Ugh, I just want her to have some decent PT. I was feeling bad about "ditching" this PT, but at the end of the day; this is my baby and she deserves the best. If I feel that someone was not doing the best for her, I as her mother need to step up and say something. I guess this post is too be continued, hopefully we will end up working with the right PT for Leah.

Physical Therapy

Today, Leah had her first physical therapy appointment through EI. It went very well. Leah was in a great mood, because she took a nice nap before! The physical therapist was the same one who evaluated Leah about a month or so ago. She was very impressed with Leah's improvements. She even said that she really didn't see any problems with Leah's leg. The only time she saw anything was when she stood Leah up and Leah locked her knee. She has been doing this for awhile, but Bernadette (PT) said that it looks like Leah is doing it less then she was before. That's great news! I'm still being optimisic that her leg will "fix itself" before she starts walking. We will now be starting PT once a week, which will be great!

I didn't get a chance to post yesterday, so I wanted to post today about how OT went. Leah again did a nice job and lasted almost the whole hour! She had a good nap right before therapy, which made all the difference! During therapy, we talked more about casting; Lisa (OT) thinks that Leah makes such a good candidate for it. Which makes me excited for it. I know once the time gets closer I'll be nervous, but for now the idea makes me so excited. Leah is still having a problem noticing that she has a left hand and arm. We are trying to come up with different things to put on that hand so that she pays more attention to it. She's very smart and knows what is easy, righty. We tried Leah with an immobilizer on her right arm (very similar to a cast, but plastic and removable) and she really wasn't using it at all. She didn't use lefty too much, but more then she would normally. I tried it again today when we were playing and she was able to use lefty more. She even put lefty in her mouth with out assitance. We will see how it continues.

And in other news, Leah is SO close to sitting up from lying down. She still needs a TINY bit of support, but not much at all. I know very soon she is going to get it! Very exciting!!

Picture Update...

At Grandma's house...
At the park, loving the swing...

Leah's first time eating Watermelon...It starts out nice and neat... ...and ends up like this!! She loved it!
The other day, Leah missed her nap--This is what happens, she fell asleep eating dinner at 5:30!
We started cloth diapering last week. Right now, I'm doing it very part time. This is her "princess monkey" diaper.
And a purple one...

Enjoy!!