Princess Leah's Journey

Welcome Baby Zach!

2010-06-11T09:34:00.005-05:00

Tuesday June 1, at 8:07pm...we welcomed our beautiful baby BOY into the world! What a wonderful surprise that it was a boy!

After a 12 hour labor and virtually no pain meds (my epi didn't take) our baby was born!

Leah is loving Zach! She's a great big sister!

We are just taking things one day at a time, trying to get used to being a family of four!!

Botox and Casting!

2010-04-01T19:15:00.002-05:00

A brief update for the 2 of you that still come to this blog! :)

Last Friday Leah had her first round of botox. I have to admit that I was horribly nervous about it, to the point where when the doctor walked into the room I broke down in tears. I often HATE that Leah has to go through these painful things, but I have to remember that in the end 9 times out of 10 they are worth it. I had spoken to many parents who were very pleased with the outcome of botox with their hemi-kids, the therapists were encouraging it and I completely trust our physiatrist. So, with all that said we went and did it. It was over in about 20 seconds, Leah sat on my lap, got one botox shot in her calf and one shot in her forearm. She screamed, I cried, then I gave her a large chocolate lollipop and all was forgotten! Thankfully, she had no reaction to the botox and no pain. We started to see results 2 days later. Her hand has a beautiful relaxed position--the tone is almost completely gone. We are now able to stretch her foot into a neutral position, where before we could only get it to a 90 degree angle. She looks great and her therapists are overall very happy with the way she is looking.

When we decided to do the botox, Leah's doctor suggested that we do a round of casting right after the shots. So, today Leah started another round of Constraint Induced Movement therapy. I always get incredibly anxious before the casting happens because I never know how he is going to react. She is so amazing! She sat through the casting process beautifully, laughing and talking the whole time. She has had the cast on for about 7 hours now and has not complained once. She is such a trooper! I'm looking forward to seeing how the therapists work with the botox and casting together! Hopefully, this will have great results!

As for me, I'm now almost 8 months pregnant and getting ready for the baby! Leah is SO excited and loves kissing my tummy and telling the baby "I love you". When we ask her if she wants the baby to come out she lifts up my shirt and tells me she wants to pick up the baby, while trying to lift my tummy. She's going to be a great big sister!

I know I say this every time, but hopefully I'll update sooner rather then later! Thanks for the few of you who still come and check up on us!

Baby!

2010-01-21T21:53:00.003-06:00

We had our "big" level 2 ultrasound on Tuesday, thankfully everything looks great! We are so relieved, but we still know that in the 20 weeks I have left things could happen. The doctor has decided that we are going to do monthly ultrasounds just to keep an eye on things and then at 34 weeks we'll do another Level 2 ultrasound.

The level 2 ultrasound was the coolest thing ever! We saw every single detail of the baby--well, almost every detail--we're still keeping the sex of the baby a surprise!

I'm feeling a weight lifted as I was very nervous about this ultrasound. Until the next ultrasound, then I'll be nervous again!

Physiatrist Appointment

2010-01-12T16:30:00.002-06:00

Today Leah had her appointment with her physiatrist. It went really well! I really like the Dr we see, she is always so positive!

She thinks Leah looks great and loves seeing her improvements! She does feel like her leg is getting a bit tighter and thinks that is because she is growing. She feels like Leah could benefit from some botox in her leg, within the next couple of months. She also said that she recommends if we are going to go ahead with the botox in the leg, that we do a bit in her arm as well. She wants the arm botox to be followed by Constraint Induced Movement Therapy (Casting), she believes we will see the best results by doing it that way.

I did get a chance to discuss my questions about Cord Blood. We didn't bank Leah's cord blood, but thought we'd look into banking this babies. I wanted to discuss banking this babies cord blood and possibly using it for Stem Cell Therapy for Leah. She said that she has not seen results from doing the Stem Cell Therapy on someone as high-functioning as Leah. She encourages us to research and make the best decision, but she went on to say that we really need to weigh the amount of time, the travel, the expense etc. She said that she has seen many parents go into the SCT thinking that their child will be "cured" and in turn the results are very minimal. She believes that Leah will be able to do everything a typical person can and at this point in time does not believe that stem cell therapy is the way to go...although she highly encourages banking the cord blood. Anyone have any thoughts? Or experiences with any of this? I'd LOVE to hear it!

What's The Word?

2010-01-07T19:58:00.002-06:00

Well, it's been a little over forever since I've last posted! Many things have gone on in since I last updated, so I'll try to recap!

Leah is little miss personality these days! She is talking SO much lately. She did start speech therapy about a month ago--but missed 3 weeks due to the holidays, so she really only had two sessions of speech. Today was her third session. In the first two the speech therapist said she is talking a lot, but that she needs to work on putting two words together. Well, the three weeks she was off she started on her own putting two words together and is doing it consistently now. The ST, Christine, was thrilled to see the progress today, and now said to work on putting three words together! It's always something...oh good you got this, now work on this! Anyway, Leah is non-stop talking to us, but her teachers are still not hearing her talk, which is frustrating since I know she can do it! Hopefully soon she'll open up to them!

OT is going well, we have been taping Leah's hand in knesio tape for the past couple of months and I LOVE (LOVE, LOVE) the way she looks in it! Her movements are so natural and precise when taped! She still has no active grasp, but she does have full use of her arm and uses it as an assit. Just this week she started to initiate a grasp which is definite progress! We plan on casting again in the next month or two.

PT is fantastic! Leah is incredibly on point with her gross motors, which is always great. She is still wearing an AFO on her left leg and an SMO on her right. I had a lot of concerns in the beginning in regards to how she looked in the AFO, because she was turning her foot in SO much, but thankfully in the past couple weeks she has self-corrected and is almost not turning in at all anymore!

All of Leah's therapists have kicked me out of the room. We realized that she was using me as a crutch and actually does a lot better without me in the room! She goes to her OT and PT without hesitation, but her ST she is a little more weary of. I think once we get on a routine with the ST she won't be as upset to go without me.

We have an appointment with Leah's physatrist next week, so I always look forward to hearing what she has to say.

As for me, I'm now just about 19 weeks along and feeling good! We go in soon for our big level 2 ultrasound which is exciting and VERY scary at the same time. I'm praying for only good news. We won't be finding out the sex of the baby, so this ultrasound is strictly to make sure everything is looking good. As it gets closer, I get more nervous. I just don't know how I feel to find out if something (god forbid) is wrong. We already turned down all the prenatal testing, because I want to just enjoy the pregnancy and I worry enough without knowing what's going on. I'm praying for only good news...please keep us in your thoughts in the next couple weeks!

Other then that, I'm loving feeling the baby move all the time! I'm convinced that he or she is going to be born with dreadlocks all the way down to their ankles, with the amount of heartburn I've been having! (You know what they say, heartburn=a full head of hair!). We've been checking out double strollers and planning on getting the room in order soon (basically just cleaning it out!). We want to move Leah into a big girl bed in the next month or two, so we'll need a place for the crib and the dresser! We are also hoping to get Leah potty trained and RID OF THE PACI before this baby comes! God help us as the paci ridding is no easy feat! She's obsessed...anyone have any good tips? All day she asks for her "Faci"...she hasn't quite gotten the "p" sound down yet. So, lots to do before the baby is born in June!

That's about it for now!

Surprise!!!

2009-11-20T11:12:00.003-06:00

Leah is going to be a BIG SISTER!

We couldn't be more thrilled to welcome a new baby into our lives!

So, June 2010 we will be a family of four!!

Yikes...it's been awhile!!!

2009-10-22T09:53:00.003-05:00

Wow, I haven't blogged in FOREVER! I'm so sorry! Not even sure if anyone even comes around here anymore, but I thought i'd do an update and try to get back into posting regularly!

Things have been busy since Leah started school. She goes 3 days a week from 9-12. She LOVES it! I was, of course, worried about how she would do in school but her teachers are always telling me that she keeps up with the rest of the class perfectly! Which is great because on top of having her hemi, she is also by far the youngest in class. I love seeing all the great projects she makes and at the end of the day when I go in to pick her up she is always SO SO SO happy! Plus, I love the 3 hours to myself! :)

Three weeks ago we started another round of Constraint Induced Movement Therapy, where we casted Leah's good arm. This has been the most positive casting we have done yet. Leah has taken to having the cast on like a pro. Her movements with lefty are on point, thought out and almost typical looking. She struggles with eating, a lot, while casted and it has been the one thing that has been the hardest for her. She has been going to school and doing projects with lefty, her teachers have been fantastic in helping her.

We get the cast off today, which I'm thrilled about! I look forward to seeing all the gains she made while the cast is off.

About a month and half ago, we switched OTs. We love our previous OT but thought it was time for a change. We now see Laura, who is great. Leah responds really well to her. Laura is very big on knesio taping, so we've been taping Leah. The tape has been amazing in helping her to be less fisted and has helped greatly with supination. I'm loving the way the tape makes her look.

This past Tuesday we tried E-Stim on Leah. They first put it on me and it was not painful at all...almost felt like a little tickle. Then we put it on Leah. Basically the E-Stim sends electric "shocks" to the muscles in order to activate them. Since this was the first time we did it, we wanted to try it on the lowest setting, Leah wasn't bothered by it at all. We didn't see any difference either, but next week we will try it with the machine turned a bit higher. We are focusing on her thumb and her wrist muscles right now. Her thumb is always very tight and she lacks a lot of support in her wrist.

As far as PT, Leah is doing great. She walks up stairs without holding on and down holding on (thankfully!). She runs with the speed of light, so fast that we often have a hard time catching her! I'm convinced she is going to be a track star one day!! Every time I'm chasing her, I have to laugh a bit at the time when I thought she would never walk or run! Now, I'm begging her to SLOW DOWN!

I plan to blog a bit more these days, now that everything has started to settle into a routine. So, hopefully you'll keep checking in!

The Future.

2009-08-27T21:59:00.003-05:00

Tonight I had a wonderful dinner with a bunch of my friends from high school. It was great to catch up and talk about our lives now!

There were about 13 of us and just about every one of them I was very close to in high school. There was one person, who wasn't part of our "group" but part of another "group" that often mixed with ours. I always saw him and we've talked a million times, but we don't really know each other. We never got close, but we're always friendly. I remember in high school was when I noticed that he held his arm differently he held it curled, behind him, and he never used it; he also walked with a bit of a limp. In high school, I never cared or paid much attention to it...I noticed and moved on. I never, ever thought to ask him about it, or to even question what had happened to him.

I saw him again last year, at a friends wedding, for the first time since high school and when I saw him, it hit me...he for sure has hemiplegia. The rest of the wedding, I couldn't help but watch him. I, of course, never want anyone to ever stare at Leah, but I couldn't stop watching every move he made. I wanted SO badly that night to ask him, and I even asked one of my friends (who is a special ed teacher, that knows about Leah's hemi), she said he had CP but that she didn't know much more about it. I didn't know how to approach him, although my friend said he's very open about it, so that night I went home wishing I had talked to him.

The year passed and there he was tonight at dinner. I again found myself watching him, and then watching Leah. Things were so similar. After dinner, we went to get coffee and there, I was talking to my friend about Leah and he over heard and asked about her! I told him that she has left hemiparesis and he said he has right!

I knew it!

Here I am sitting across from someone that I've known for probably 8 years who has the same diagnosis as my daughter! We talked about how far therapies have come, he told me that he wasn't even able to get botox until he was 16 years old. He also told me that it hurts like hell and that he would NEVER recommend doing it on a 2 year old! He is much more involved then Leah and has no use of his arm from his shoulders to his fingers, nothing and you know what he told me!? He said it's ok. He said that sometimes people stare and sometimes people ask about it, but he said that after 25 years of it, he's used to it and ok answering questions. He said he can do just about anything, because he is so well adjusted with his non-effected hand. He was always mainstreamed and in school, he obviously always had friends. He is just a typical man, and he definitely does not let his hemi stop him!

So as I sat there talking to him, with tears running down my face, I just realized that no matter what, even if Leah never gets that perfect grasp (or even no grasp at all), she's going to be ok. I've met (or "met" virtually) a lot of wonderful hemi-mommies and I really feel like I have a wonderful support group...but everyone that I've met has young children. We don't get to hear how they will do in elementary school, or junior high, or high school etc. We talk about the different treatments our little ones are getting now, but we have no way of knowing how our kids will look in the future. I know for me, it's one of the scariest things to know that Leah may be looked at as different. But, sitting there talking to this guy knowing that he's been ok, was almost as if I got a small glimpse into the future. I know that God put this guy in my life as if to say, see this is not the end of the world, Leah is going to be JUST FINE!

E-Stim?

2009-08-14T11:36:00.003-05:00

We have been talking about doing some E-Stim once Leah turns 2. Her OT wants to do it in her hand/arm and PT would like to so some in her calf.

Has anyone ever done E-Stim before? Or heard anything positive or negative before?

They basically said they hook up the "tickle machine" to Leah and send small electrically currents to her muscles. They said that I would be able to try the machine on me before, so that I know how it feels.

I'd love to hear of any experiences with E-Stim! Thanks!

OT Struggles

2009-08-10T21:18:00.002-05:00

Lately OT has been quite a struggle for Leah. She is really at a standstill as far as what she is doing with her effected hand. We still have NO active grasp and we are fast approaching two years old. My biggest fear from day one was that Leah would never have a grasp and everyday that goes by that fear gets stronger.

This past weekend I ran into a lady I know, who happens to be a well known OT in my community, and we got to talking about Leah. I asked her if she had any magic tricks to get Leah using "lefty" more and she basically went off about all these different things she would be doing. She went on to tell me that hemiplegia/hemiparesis is her favorite diagnosis and that when she was in school she wrote her final paper on hemi. She said she would love to start seeing Leah since she doesn't often get to see kids with her diagnosis.

Sounds great, right? Right!

Except, I LOVE Leah's OT. She has been seeing Leah every week, twice a week since Leah was 4 months old. She was the one who was there when we got the diagnosis and she was the one who always told me it was going to be ok. I hate thinking that we might not be with her, because she has really done so much with Leah. But, I think as this point we need to do something different because OT is just not working lately. Lisa (Leah's OT) is so wonderful, but we are at such a standstill that today she said she thinks we should cut down OT to once a week. I know that through life Leah is going to have times where she does great and she is going to have times where she doesn't do much, the latter is now.

I'm excited at the idea of getting a new pair of eyes and hands on Leah. I think that it will be good, but at the end of the day I can't help but feel like I've questioned Lisa's ability as an OT. I really do think she is fantastic at what she does, but I need to do what is best for Leah. I think both Lisa and I have gotten so close to Leah, that we need to remove ourselves a bit. Kind of like watching a kid grow, you don't realize really how much they've grown until you don't see them as often. So, maybe we'll use these next couple months (to a year) for Lisa and Leah to take a step back. We can only see this OT for the next year anyways, because she only takes EI, which Leah ages out of in a year, where as Lisa's clinic takes our insurance. In the end, we will still see Lisa every week, just once a week and then we will see the new OT once a week. I just hope everyone can work together for Leah, because in the end she's number one!

"Just A Fluke."

2009-07-14T20:54:00.004-05:00

Something is in the air, my friends are all having their second baby, Leah is almost 2, we are moving into a bigger house--all things pointing in the direction that we may be ready at some point in the near future to expand our family.

With that said, just the thought of being pregnant has me completely terrified. I've decided that I MUST exhaust every single one of my options as far as finding out what might have been the cause of Leah's stroke and what are the possibilities that this could happen again. I NEED to know that I have done everything in my power to make sure that I was not the reason for Leah's stroke. I need to know that I have had every test and seen every doctor that needs to be seen before we can even think of remotely talking about being pregnant again.

This is why I decided to contact one of my good friends father, who is a very well-known, well-respected and very well educated high risk ob-gyn at Northwestern Memorial Hospital in Chicago. I spoke to my ob-gyn after we got Leah's diagnosis a year and a half ago, and after that we never really spoke about it again (I'm due for an appointment soon!). So, while I trust my ob-gyn, I know my friend father and I know that he would be honest with me and help me find the best professionals possible. I decided to email him a very long email with all of my questions and fears for getting pregnant again. I decided to ask him his professional opinion on the tests that both Leah and I received and their results. I decided to ask him why he thinks this happened based on information I gave him about my pregnancy. And I decided to ask him what he thought about us having another baby.

The email response from him was within a half hour of me sending it. It was well thought out and answered all my questions. I wasn't surprised by what he had to say, because quite honestly it's the same thing my doctor told me, the neurologist told me, the hematologist, the physiatrist etc. It was JUST A FLUKE.

A direct quote from the doctor, who worded it much better then just a fluke, is:

"The recurrence risk in subsequent pregnancies is thought to be very low, and I cannot remember a single time when it has recurred. I would characterize its occurrence as very infrequent and unpredictable (a fluke if you want to call it that), and do not know of any other testing that could or should be performed"

The fact that he has never seen a recurrence in all his time as a doctor is so interesting to me. It actually makes me feel a lot better. I find it very interesting that he does not think I need any further testing, as I have been tested for a whole slew of things and the only thing that came back abnormal was I tested positive for MTHFR. MTHFR is present in half the population, and has never been associated with a coagulation problem unless a person has not just one gene but both copies of MTHFR, which is still very common. I only have one. (Even then it can only be a problem if the two genes result in a high blood level of homocysteine, which is usually fixed with the amount of folic acid found in a single vitamin tablet taken daily.) So the MTHFR, is not a factor in why Leah had a stroke. Therefore all my testing is done and normal. In some ways I was hoping he would say, I think you should do this and this test and so on...so maybe we could find an answer. But, no such thing. Again, just a fluke.

He went on to write:
"So, the prognosis for the future is very good—it is extremely unlikely that his will happen again, even if you go ahead and have another 10 children. There is no reason you should not try again. Unfortunately, the reproductive process is not perfect and without risk, but your risk is probably not any higher than anyone else. If you were my patient, I would not do anything different for you as part of prenatal care, so there is no reason you have to see a high risk physician if you are happy with your current doctor."

It is beyond comforting to hear that my risk does not seem to be any higher then anyone elses. I also think it to be very interesting that he does not suggest a high risk doctor. I had the assumption that because Leah's stroke occur ed while in-utero that when I get pregnant again I would be monitored very closely. I understand that because there was no reason and sometimes these things "just happen" (i.e. fluke!) that there would be no reason to be monitored by a high risk doctor. Had we found a reason, or a gene that showed us why her stroke occurred then maybe they would watch me closer. Again, I have not discussed this with my doctor and plan too--if she suggests a high risk doctor, I won't turn down the opportunity to be monitored all the time!

I have to say that speaking to him and knowing that he knows his stuff was very interesting.

He writes:
"The area of fetal or newborn stroke is a very new one, as no one ever talked about it prior to the frequent use of CT scans, which is not very long. It also remains a murky field with lots of issues still yet to be defined, so patients often get different opinions when they talk to different doctors. I will give you my opinion on this topic, and hopefully it will not conflict too much with anything you have already heard."

I'm so glad I asked these questions. I'm going to continue to ask questions and pursue any sort of answer, because as you see even a very smart high risk ob-gyn, say that the area of pediatric stroke is a "murky field". We MUST ask these professionals all the questions that we have, so that they can continue to research and learn about these strokes. If nothing else, at least we could have hope of getting some answers one day, because lets face it there has to be a reason. I'll take fluke for now, but I want to work for answers. It is imperative that we as parents press these doctors to research more in hopes that one day there will never have to be another un-born baby that has a stroke, and that there will never be another parent that has to hear the doctors say "Your baby/child had a stroke".

As for us and our decision to expand our family, we still have some time. I still want to speak thoroughly to my doctor to make sure she agrees everything is good. Yes, we'd like it to be sooner rather then later--but we want a healthy baby. Right now, we are enjoying Leah so much. She definitely doesn't let her stroke stop her! We know that as sad as we get sometimes that Leah will have struggles in life, we know that things could be so much worse. We are so thankful to have her, she is a beautiful, bright, wonderful little girl and we are so blessed to wake up every morning to her sweet smile.

Summer Fun!

2009-06-28T23:09:00.003-05:00

Sorry for the lack of blog posts!! We've been enjoying summer!!

Leah is LOVING the warm weather, in the past week we've been to the beach or the pool every single day! Leah is doing great in the pool, although she does fall A LOT! She doesn't always get both arms down to catch herself and more then once has gone under without wanting too! She always recovers and gets right back up and running! I'm just now noticing how much she really does fall. I think because it's summer and I've been slacking in putting on her braces (sandals are just so much easier!!), that she is a bit off balance. I'm trying to get the braces on her for at least 5 hours a day, but it's hard when we go to the pool every afternoon!

As far as a PT/OT update--there is not much to report. I'm finding PT draining, because we are not really doing anything! We are hopefully switching to in-clinic which will be better, but I honestly don't know what the PT does when she is here! I feel like the whole time we just talk (we know a lot of the same people!) and Leah runs around! I know it's just a stage and Leah doesn't need as much PT right now, but we'll continue to do it! Leah is VERY close to out growing her braces--so we are starting the LONG state process to get new ones!

OT has been going well...we've seen some great improvements and awareness in Leah's use of "lefty". She wears the bi-valved cast during every OT session, and last week attended a Constraint Induced Movement Therapy camp. Leah was the youngest one in the room but she stayed and played with the other kids nicely. It was adorable, 4 little hemi-kids all with their little casts on! I love that Leah will have this when she is a bit older and can understand that she is not that has to go through this! I wish they did that camp more often, but I think we will have to wait until next year to do it again!

Happy Father's Day!!!

2009-06-20T23:32:00.005-05:00

Happy Father's Day to the best "Abba" out there!!! We love you!!!

Vacation!!

2009-06-16T21:06:00.004-05:00

This past weekend we drove up to the Wisconsin Dells! It's a great area with a ton of waterparks! It's about a 3.5 hour drive from us. The hotel we stayed at had 5 different water parks, 2 indoor and 3 outdoor. It was awesome! Leah was very nervous at first, since this was her first experience at a waterpark, but she quickly warmed up to the idea of splashing in the water!! One of the waterparks had these awesome water-swings that Leah just LOVED!!! I thought what great PT this was for her leg too!! Here's a video of Leah jumping in the water...

Leah--20 Months.

2009-06-04T13:57:00.005-05:00

Age (in months, or years and months): 20 months

Physical abilities: jumping climbing everything, perfecting kicking and throwing using both legs, marching, starting to walk up steps (holding on), running

Speech/language: vocabulary, sentence length, etc: around 50 words now, She talks constantly and has quite a few sentences, such as "who's that" or "I want this". She understands multi-step directions easily and points out pictures in books.

Other cognitive stuff: puzzles, reasoning, etc: Leah loves to do puzzles. She does small nob puzzles with her right hand and large nob puzzles only with her (effected)left hand. She can sit for awhile doing puzzles and usually doesn't need much help getting them all in the right spots.

Creativity: loves coloring and art. She can draw circles and loves to put stickers on paper or herself!

Imagination: plays wonderfully with her baby dolls/stuffed animals. Talks to them, kisses them and puts them to bed.

Social: miss social butterfly LOVES to play with her friends. She is always asking for them and when they are together she loves to hug and kiss them.

Character/personality: Leah has such a sweet little personality. She is very loving, caring and extremely affectionate. She is also very clearly entering the "terrible twos" in that she wants what she wants when she wants it! She can throw quite the tantrum as well

Therapy: Leah is receiving PT once a week and OT twice a week right now

CIMT: We just finished our second round of CIMT, where the cast had to be removed early (again) this week. The therapy clinic now knows Leah as "Houdini" because she manages to somehow slip out of a huge cast! Nonetheless, we are VERY pleased with her results. She had little to no awareness before this and is now incorporating "lefty" into a lot more. She is still using it mainly as an assist but has used it with an active grasp. The carry-over has been fantastic!

This summer Leah will be participating in a Constraint Induced Movement Therapy Summer Camp. She will be the youngest child they have ever taken, but her OT thinks that Leah is mature enough to join the 3 and 4 year olds. We still need to work out the details, but we are really looking forward to it!

Update

2009-06-01T19:36:00.003-05:00

Sorry for the lack of blogging, we've been very busy!

1) Leah got recasted last Thursday. This time we used regular casting material, so that we can cut it off and bi-valve it.

2)Leah is doing amazing with the cast, I can't say enough how happy we are doing CIMT this round!

3)We saw our Physiatrist last week--she was very impressed with all that Leah was doing and said she is right on track.

4)While at the Physiatrist I asked about Leah's eyes. I have been noticing that when we play and look through something small, she is very right eye dominant and I wanted to know if that is a typical pattern or if she might have something going on with her vision. She said it is very typical, but looked at her and said she is looking with both eyes--but her left does go in a tiny bit. She is not concerned at all, but said we can take Leah to a pediatric optamologist if we see anything else.

5)The cast comes of on Thursday--we are looking forward to seeing the crossover that comes after CIMT!

A Quick Decision...

2009-05-24T22:21:00.002-05:00

This morning when Leah woke up, I noticed that her cast was really loose. Luckily, Lisa, our OT had scheduled therapy for this morning. When she got here she also commented on loose and soft the cast was. Since she has not really worked with this material too much, she said it looked fine and should stay on, but that she didn't really know how well.

After every cast, the casting specialist and our OT always tell us to watch the thumb. If for any reason we can't see the thumb the cast needs to be removed right away. This is because the way they are positioning the cast and circulation issues. Well, all day I was checking the cast because I knew it was loose...then tonight I watched Leah pull her thumb out and pop it back in place. She did this a few times and I started to get worried.

Also, this entire time Leah has not complained once about the cast and tonight she was definitely telling us that something was not right with it. I'm not sure if she was uncomfortable or if she thought it felt funny because it was sliding off or what. I called Lisa as soon as this all happened and she basically left the choice up to us. She said she thought it would be hard for her to slip out of the cast but since her thumb is going in we should watch it and if it goes completely in we should remove it.

After the phone call, I watched Leah for a bit and noticed that her thumb was in, so we made the quick decision to remove the cast. I was too nervous to let her sleep that way, not knowing where the cast may be cutting off circulation. Lucky for us, this material was peel off, so I grabbed the tape at the end and unraveled the whole cast.

I'm feeling pretty bummed out that we had to take it off early, but my mommy instinct is telling me that it was the right thing too do. Ideally we would get into the OT to get her casted again right away and that would be Tuesday morning, but we have a Physiatrist appointment then. Hopefully, Tuesday afternoon--if not, we'll try for Wednesday. Our OT has assured me that these couple of days without it, won't effect Leah overall. I'm just upset because she was doing so well. I'm looking forward to getting her casted again...asap!

What A Sight!

2009-05-21T20:27:00.002-05:00

Today Leah got her cast removed and a new one placed on. At first I was pretty disappointed that we had to remove it and I really wanted it to just be left on for the whole time. But today, I was very happy we removed it, it was really smelly! Plus, once removed we noticed that Leah had a bit of a heat rash under the cast. We were able to wash her arm (with lots of soap!) and then we put some baby powder on it to help with the rash. It went away pretty much, so we decided to go ahead with the casting.

The casting specialist and our OT have been using Leah as a guinea pig and trying out some different materials. The first round we used a thinner material, which made removing the cast very easy with scissors! So, we didn't have to use the saw...woo hoo! The material we used this time, is peel-off. So next week when we are ready to remove it, they will literally just unravel the whole thing! Works for me, again I'm thrilled with no saw!

So, Leah got the cast removed and I took her to wash her stinky arm. While we were there she started playing in the sink, she took her left (effected) hand and started washing her right with it! She was playing in the water with 2 hands, but mainly using her left! It was the best sight!! I mean after ONE week, that is the results we are seeing--AMAZING! I am fully aware that had she been out of the cast longer she may not continue to use it that much, but even the awareness she has been gaining is HUGE! I'm so impressed with constraint induced movement therapy right now! This is so exciting!!!

CIMT, Videos and Update

2009-05-20T21:30:00.009-05:00

Well, we are one day away from Leah having the cast on for a week! Yay, we made it a week! Tomorrow, the cast will come off, we will uni-valve it, wash Leah's arm (WOO HOO!) and put a new cast on! We'll see how Leah does with the saw, should be interesting. I'm looking forward to a new non-smelly cast. We have been playing at the park everyday and Leah has certainly been sweating, so the cast is not pretty. Bath time has been hard, Leah wants to play and we want to make sure the cast doesn't get wet.
Other then bath our biggest challenge is eating. Leah is working so hard on her grasp and she just doesn't have it yet. Which makes eating challenging for her. She does well holding something, and tries to bring it to her mouth. Therapy has been great. Leah had an extra OT session on Monday where her therapist, Lisa, was super impressed. We also had our regularly scheduled OT session today. Lisa, was even more impressed and said she saw total improvements from Monday! Leah's focus is incredible. She is trying so hard to get things done. She does well with only a bit of assistance. You can really see how determined she is in her face. I am so unbelievably proud.

Here are some short videos of OT, then a cute video of Leah being Leah!

You can see in this video the pieces for the toy were a bit too big for Leah to hold. Leah gets easily frustrated when she can't do something right away, that's why she says "all done". Although, her movements were focused with just a little help from Lisa...Leah did a great job of turning the handle, which is annoyingly on the wrong side!

Leah did great closing this toy...she had some trouble opening it, but eventually did it herself! Yay!

The play-doh is very motivating for Leah (most of the time). She was too funny looking in the cup! She was able to grab the play-doh to play with it! It was great!

My favorite thing that Leah is doing thus far, is really using her left hand to do things! She now blows kisses with that hand, but struggles with supination. She will also give you a high five with lefty! It's great because just last week NONE of this was happening. She has gained SO MUCH awareness already. We are looking forward to seeing how she progresses in the next couple weeks! I'm thrilled already with the things she is doing! And as you can see in the video, the cast does not stop her!

CIMT--Day 3

2009-05-16T23:21:00.004-05:00

I'm so glad people still check in here, thanks for all the comments!

The past 2 days have gone well. Leah is not really doing much with her left hand, but she's not complaining about the cast so that is positive.

Our OT pretty much told me I need to "chill out" (but wayyyy nicer) about Leah getting a grasp. I've been really uber-paranoid that it's just not going to happen and really stressing out about it to our OT. I was talking to her on Friday and told her that I was concerned (yet again) about the grasp and she said that we need to not focus on the grasp this week and work on Leah's overall awareness. It's hard for me because so many of the blogs I read have hemi-kids really using there effected hand and Leah does not...ever. I know she is still so young and that it can happen, but I'm so afraid that it may never happen.

As far as the casting, Leah has been doing well. Her balance is great and she is not falling at all, which is something we were really worried about. Leah had a fantastic PT session on Friday, I thought it was going to be awful because she had gotten up at 5:30 that morning. Thankfully, she was her happy self. After PT was another story as she was exhausted and quite a handful!

Eating is something we are really struggling with. She does not feed herself with the cast on. She will try and get something to her mouth if I put it in her hand, but needs a lot of help. Doing this she gets so frustrated because she is hungry and she knows it's hard for her. I'm constantly trying to help her, but also trying to make sure she is eating enough! She had a rough night last night, so I'm hoping tonight is better. I'm not sure if she is uncomfortable with the cast on or it's just that she is teething. Either way, it's no fun for any of us!

This afternoon we went to the park and Leah had a great time! She was really afraid of the swing, which she normally loves. I think because she did not have the security of her right hand she was nervous on it.

This video was taken about 2 hours after Leah was casted. She got a sticker from her OT, that I decided to put on the cast to see what she would do!

I can't wait to see the other things Leah does! I'm going to try to stop stressing about the grasp and just see what happens. Our OT says she thinks she will get some sort of grasp, but it may not be for a little while longer. So, we'll see!!

CIMT--Day 1

2009-05-14T20:19:00.005-05:00

Not sure if anyone really checks this anymore, but for my own records I'm gonna write Leah's progress!

The cast was put on at 2:00 today! I was so nervous about them putting it on her, thankfully it went REALLY well! Leah only cried twice for very short periods of time! I was thrilled!!

After the cast was finished she wanted to walk around. So I put her down and she walked away and proceeded to fall...which made us all really nervous! She only fell that once, so that was good. She was great with the cast on and didn't complain at all.

The rest of the afternoon we went to go get ice cream and went to the park. It was great, Leah did a really good job.

Dinner tonight was very difficult, but Leah was extremely exhausted. She hardly napped today and was tired from the cast, so I didn't force her to work as hard. I did help her put the sandwich in her left hand and she did a nice job getting it into her mouth, except for the supination! Grr! After dinner, she was pretty upset. She would look at me and go "Mama, all done, all done" while showing me the cast. She was really tired so I put her to bed early and she didn't fight me one bit.

I'm hoping tomorrow is a bit easier for her, she is a bit frustrated but I'm hoping with a good nights sleep things with be ok.

I'm so proud of her and how she is reacting. It's great to see!

10 on Tuesday!

2009-05-12T20:05:00.003-05:00

1) I'm feeling good about casting Leah this week. Nervous, very very nervous but overall good. The hardest part will be getting the cast on, I know Leah is going to hate it.

2) I'm praying that after this round we get some sort of active grasp. She is so close and I'm so afraid that we are going to hit the point where it's too late for her to develop a grasp. Our OT has assured us that it is not too late...but I can't help but be worried.

3) I'm loving that Leah is walking and am looking so forward to summer! We already go to parks and ice cream all the time and it's just so much fun!

4) Leah does not want to sit in the stroller or cart anymore, this makes shopping VERY difficult!!

5) Leah loves to run! I must say while I am thrilled with her gait while walking, her gait while running is far from graceful. It's almost as if you can see her mind working faster then her legs which usually results in her falling! Lots of scraped knees and boo-boos already!

6) Leah loves to march and jump these days!! She can't exactly get off the ground when she jumps, but boy is it funny to watch!

7) We have settled nicely into our new place. We are living in a condo building now and we are right across the hall from our good friends who have a daughter a bit older then Leah. They are adorable together!

8) Leah is doing great in her braces. I keep them on for most of the day. I find that she falls so much more without them.

9) I need to update my blog more frequently! Maybe it's the nicer weather (or the fact that everyone is on facebook!), but I just haven't been in the mood to update lately!

10) Mother's Day was great! We took Leah to see Sesame Street Live. It was great!! Leah LOVED it!!! She was screaming with excitement! Then we went to a BBQ with my family, where Leah and Avi got me a new laptop! Yay!

Wish us luck with the casting!! I'll update after we get the cast! Ahhh, I'm nervous...but excited!

Major Bummer!:(

2009-05-05T21:20:00.001-05:00

Turns out Leah will not be getting casted this Thursday... :(

There was a scheduling conflict at the clinic and her casting needs to be post-poned until next week!

I was getting excited and nervous today and then got the call from Leah's OT!

Bummer, I was ready for it! Oh well, now we wait until next week!!

Round 2, here we come!

2009-04-30T21:17:00.002-05:00

Well, it has been decided today that Leah will be casted in one week! We will be going in to get her casted next Thursday and they will keep it on for one week, remove it an place a new one on.

I begged our OT to let us keep it on for longer, she considered it and talked to a few other OT's in the clinic and the casting specialist and they all voted against it. I'm bummed about that for sure. They said that their policy is to remove the cast after a week and then put a new one on. I can't argue with them, I trust our OT completely and if this is the way she wants to do it then it is ok with me.

I'm excited and nervous at the same time! My one and only goal for this casting period is to get some sort of grasp. That's it.

I'm hoping it goes better then our first round and I'm certain it will!!

Oh, meet our new pets, Barney, Baby Bop and BJ! Leah is obsessed with them, she walks around all day "ishhy, ishhy" and she loves to give the fishes kisses!! It's adorable!

Running!!!

2009-04-28T20:49:00.002-05:00

This was a couple of weeks ago...but I think it's too funny!! She has gotten very fast and falls much less these days!

We're back!!

2009-04-24T10:08:00.002-05:00

Wow. It's been awhile since I've blogged! I now have to get back into blogging mode and get everything together!

After a wonderful trip to Florida and a move, life has been crazy!

Leah has been great through-out! She is not worlds best traveler and while in Florida had a hard time sleeping, but once we got home she went right back into her schedule! Then a week later we move and she is once again thrown off! We are slowly trying to get back on schedule!

Leah is now 100% walking, in fact she has taken a liking to running recently! She still falls a lot and has a noticeable limp without her braces on, but once in the braces she looks great!

We have definitely seen some carry-over from her time spent in her AFO/SMO and she is not locking her knee as much or toe-walking, which is wonderful! She has been doing A LOT of squating, kicking and climbing lately! I'm thrilled with her large motor progress! I, of course, worry about the limp not getting better but I'm hopeful that with time it will!

We have not had much in the way of OT lately. Leah's OT went out of the country on vacation for 2 weeks, then we went away, then we moved and in between all of that we've gotten to see Lisa once! :( I'm hoping next week to get back to our regular schedule!

I know when I see her next week we are going to really be discussing Constraint Induced Movement Therapy. I'm thinking we will probably be casting Leah as soon as the following week! Wow! I'm excited and nervous! I'm just hoping we have a more positive experience then the first time! I CAN'T wait to see the results! Leah is just SO close to an active grasp that my only hope with the CIMT this time is to get even a little bit closer (if not get it completely!).

Leah is 19 months old this week and I can't believe it! She is really not a baby anymore! She talks up a storm and definitely has quite a personality! She knows what she wants, when she wants it and is not afraid to let us know! She's an absolute red head! But she is also so loving and caring! I'm really enjoying watching her play with her baby dolls. She feeds them, rocks them and my favorite gives them kisses! It's so sweet and I love seeing her imagination! It's great!!

I hope to be back to regularly posting now that things are a bit more settled down!

My computer is not working and Avi's has no pictures or recent videos on it, so hopefully soon I'll be able to post some new ones!

Update!

2009-04-16T20:54:00.001-05:00

Sorry I've been gone so long, life is crazy around here!!! I may not update for a little while, as we are moving next week so we have a lot to do!!!

Keep checking in and soon you'll see posts about Leah's walking, talking and our upcoming plan for constraint induced movement therapy!!!

A Little Note...

2009-04-06T19:32:00.002-05:00

We will be heading to Florida on Wednesday, so I probably won't get to update the blog until next week!!

We'll be back soon, so keep checking in!!!

Off too the beach!!!

~Amanda

Who would have thought!?

2009-03-30T14:07:00.002-05:00

A year ago, I cried that Leah would have to wear braces. I cried a lot and even when we got them and tried them on her, I fought back the tears. It hurt my heart to know that she needed these braces.

But today...I love the braces!!! It still makes me sad that she needs them, but it makes me smile like I've never smiled before to see her walking everywhere!!!! The tears I cry now are of pure joy, because Leah is walking! She is really walking!!

Since 15 months she's been taking steps and we kept wondering when it would happen and boy oh boy has it happened!! I begged Leah's PT to help her get to his point and she kept telling me, that once she was walking I would be begging her to slow down!! Haha, today we had that first real experience with that. I took Leah out to lunch, with a couple of my girlfriends and their kids...Leah sat for maybe 10 minutes and then wanted out of the high-chair. After that I got in about 2 more bites of my sandwich and my lunch had officially ended. Leah was walking circles around the restaurant, which was luckily empty!! She even walked into the Men's bathroom...yikes, that was embarrassing!

Her gait is looking so much better in the braces, she is not hyper-extending nearly as much. She has a beautiful knee bend when in standing and her feet are both nicely flat. When I don't have her in the braces I can see how different her gait is and how her balance is not as good. We still only have them on for 5 hours a day maximum, and while she walks without them on...I really see the difference they make!

Who would have thought I'd be sitting here so excited about braces!?!

18 Months!

2009-03-29T20:17:00.001-05:00

Shoes!

2009-03-25T21:06:00.004-05:00

Well, we've had Leah's braces for about a week and half now. She is been doing very nicely in them. She was in them today for the longest period of time yet, about 4 hours. We probably won't do more then 5 hours a day, but right now we are still watching for any skin breakage or blisters. Thankfully there have been none, so I'm hoping we are good to go with that! Leah now has 2 new pairs of shoes for her braces...one standard gym-shoe and one cute little mary-jane style gym-shoe. I LOVE the mary-jane style because it is incredibly lightweight and super easy to slip on over the braces. The gym-shoe is a bit more bulky and heavy! The only issue with the mary-jane is that Leah is able to get them off herself and once she gets them off she starts to un-do the braces. Props to Nordstroms for having a wonderful sales lady who was knowlegable about fitting braces and to them for having sizes that fit braces!!

Here she is in her braces...eating lunch! Yum!

These are the mary-jane style:
And the gym-shoe:

Here's a video of her walking with them. As I start to say in the end of the video, I probably should have moved back further!!

Evaluation Time!

2009-03-19T21:21:00.005-05:00

The past couple of OT and PT sessions have consisted of Leah being tested for her yearly Early Intervention evaluation. There was no question in any of our minds that she would of course qualify for services, but this is just something EI has to do.

Both her OT and PT used the Peabody Developmental Motor Skills (2nd Edition) to test Leah.

I have to say, I was terrified for the results, but am feeling much more relieved after hearing them!

Last week her PT tested her, here are her scores...

Age tested at: 17 months

Stationary Skills (This sub test aims to measure the child’s ability to maintain balance or equilibrium.): 18 Months!

Locomotion Skills (This sub test evaluates the child’s ability to move): 14 Months.

Object Manipulation (In this sub test, the object that is manipulated is the ball. This 24-item sub test involves activities such as throwing, catching, and kicking balls.): 13 Months.

I was pleasantly surprised that she scored as high as she did. Although, I must admit that I think these tests are ridiculous. They are based on a typically developing child and I can't expect Leah to be on that same level! With that said, she would have scored much higher overall had she been walking fully. She is still so close! Another reason, I think this test is ridiculous is because during the testing the PT had Leah stand while holding a ball, then she told her to throw the ball...Leah threw it but didn't extend her arm fully so she did not get the full amount of point. Uhhh, so ridiculous! Then she had Leah standing while holding the ball, told Leah to throw it and wanted her to take steps after. Well, Leah stood there threw the ball and proceeded to loose her balance and fall. She did not get any points. Ugh! Such a dumb test! Oh and she only got half a point because she needed some help going down the stairs (on her tummy), yeah well a day later she was doing it all the time with no help! Anyway, I'm happy with where she is at. All over the 12 month point! Her PT had only good things to say about her.

As for the OT testing, this was even more ridiculous! The tasks on the Peabody Developmental Motor Scales are mostly unilateral at this age. Which means Leah scoring was amazing! It's crazy because every task the OT had her do, Leah was allowed to do with her non-effected hand! Here are the results:

Age tested: 17 months

Grasping: 28 Months

Visual Motor Integration (This sub test evaluates the child’s eye and hand coordination): 19 Months.

So, you can see that she scored REALLY well and that she is actually quite advanced with her right hand. Our OT, did say that by the next evaluation things are going to get a little bit more bilateral and require her to use 2 hands. Bilateral play comes around 2 years old.

Again, the OT had wonderful things about Leah. The overall evaluation went perfectly, I can't ask for better therapists to work with! They are so great!

Stay tuned for a post about shoes! My little monkey now got 3 new pairs of shoes in a week!! Two that actually work with the braces (and are super cute!) and one for her non-brace time! Yay!

They are HERE!

2009-03-17T19:08:00.004-05:00

Leah got fitted for her braces today! YAY! Finally!

She was great during the fitting, a little fussy...but she had only had a 45 minute nap prior, so that was to be expected! The braces turned out so adorable! They are so cute and little! We learned that the shoes we just bought will not work with the braces (of course, just my luck!). So, tomorrow we will go pick out some new shoes at Stride Rite! Leah had both braces on and took off! She has been walking so much anyways, but having them on she just started walking all over. Even though she shouldn't be in them without shoes.

Liz the physical therapist who did the braces, mentioned that Leah's heel cord was very tight today, which I thought was very interesting. Leah's heel is always the tightest part of her leg, but I was surprised to hear how tight Liz thought it was. Nadine, our weekly PT, hasn't mentioned it being that tight in a long time--if ever. I'm wondering if it's because of the new shoes and all the walking she has been doing that she is becoming tighter. Anyway, Liz mentioned that she thinks we should probably get Leah a strap for the top of the AFO (the bigger brace) to ensure that her heel stays down in the brace. She said that shouldn't take long to get and Leah can still wear the braces how they are for now. She also mentioned that we might want to think about Leah wearing the AFO at night to stretch her heel out. These are all things that need to be discussed with our PT.

So, our schedule is to start wearing the braces for a half hour tomorrow, then an hour the next day and to build up to 5 hours a day. Again, we need to discuss with our PT, but this is what Liz recommends.

Aren't they so cute!?!

Really?!?

2009-03-16T13:09:00.003-05:00

Today, I decided enough is enough, Leah needs shoes! We've been waiting (and waiting, and waiting) for the darn braces to come so that we didn't have to buy 2 pair of shoes! The braces were supposed to be in last week! Anyway, we decided that since she won't be in the braces 24/7 we should get her some shoes that fit her for the times she's not wearing them.

Leah is 17.5 months...it was time she got some REAL shoes. Enough with those darn robeez! So, today I took her over to Stride Rite and got her the cutest pair of shoes! She has never been fitted and it turns out her foot is already wide, the lady said we are going to have a heck of a time fitting shoes with the braces. Great.

We picked out the shoes, tried them on and decided to leave them on her while we paid. She took off! She was walking down the halls of the mall! It was adorable.

While we were trying on shoes and I was talking to the saleswoman (who was great, if anyone lives near me, email me and I'll give you her name!), about Leah getting braces and that we'll need to come back to get her another pair of shoes. She mentioned they were having a buy 1 get on 50% off and then she told us to keep the recipet and come see her when we have the braces! She said she'd give us our next pair for half off! Yay!

As we were walking out of the mall, I get a phone call from Leah's physical therapist...guess what she said?? THE BRACES ARE HERE!

Really!?!? 1) We have been waiting months for them and 2) We just bought Leah a brand new pair of shoes and haven't even left the mall yet!

I knew the second we gave in and bought her shoes the braces would come! Just my luck!

Oh well, She looks too darn cute in her new shoes and is walking so nicely in them!

Butterfly Girl!

2009-03-12T15:56:00.002-05:00

General Update!

2009-03-03T17:14:00.004-06:00

Age: 17 months

Physical abilities: Crawls extra fast, Takes approximately 15-18 steps at a time, Balance has improved immensely, Learning to walk and turn corners, Climbs on the couch/bookshelves, Can stand on one foot and kick with the other, Dances by lifting legs independently, throws balls.

Speech/language,vocabulary, sentence length, etc.: Has approximately 10 consistent words

Reading/pre-reading: Reads books to us and/or her dolls, Runs her finger along the words (like we do) while 'reading.' Helps to turn the pages.

Number stuff: Counts/shows on her fingers 1-2-3.

Other cognitive stuff: puzzles, reasoning, etc.: Can do puzzles with the pegs on them, will put things in the correct place without help but cannot always get them in their spot the correct way without our help.

Imagination:Pretends to eat food that's not there, also pretends to feed it to others, has stuffed animals make animal noises though not always the right noise for the right animal

Social: Interested in playing with other children, will follow them around trying to get their attention. She will also get upset when a toy is taken away from her.

Character/personality: Very loving and always willing to give a hug or a kiss, she is also incredibly friendly and says 'hi' to everyone she sees. She has recently developed a bit of a temper and is not a fan of the word 'no'.

Anything else/other: Leah is a very happy toddler. She is doing just beautifully. We are still waiting on her AFO/SMO and are hoping once she gets those her walking will improve even more. We hope they provide her with a bit of security and stability. She often relies on holding our hands when she wants to walk, we believe that she has a hard time trusting her body, but once she is up and going she often does well.

OT/PT: Leah is in OT once a week and PT once a week. We will soon be going back to OT twice a week. We are also going to be adding on Water Therapy sometime in the summer. (We tried last month and Leah didn't enjoy it). Leah loves her therapists and enjoys playing with them. They are thrilled with her progress.

Constraint Induced Movement Therapy: We are planning our second round of CIMT for April(ish). We will reevaluate then and make sure that it is the right time. We are also hoping to enroll Leah in a Constraint Camp this summer. She would be the youngest they've ever done, but the OT's think she will be ready. This is all pending the progress she makes in the next couple months.

Bathtime Fun!

2009-02-25T21:01:00.002-06:00

Please excuse my horrible singing!!! But enjoy her adorable singing! :)

Play-Doh Therapy!

2009-02-25T20:57:00.002-06:00

Leah had a great time playing with Play-doh today! It was her first non-therapy time playing with it.

She brought some of her therapy into it, by making towers on her left hand! Too cute!

Both Hands!

2009-02-22T21:34:00.003-06:00

Leah has really been using her left hand a lot more lately! It's amazing to watch her, it's almost as if something just clicked! She had literally ignored "lefty" for 16 months and then one day realized that she had 2 hands! She still does not have an active grasp, but I think in time that will come. She really tries so hard to put things in her hand or grab things with lefty. It's fantastic!!

Awhile back, I remember reading a blog post about someone giving their child a sippy cup without handles to promote two-handed use. I thought this was great, so back then I went out and bought a sippy cup without handles. I filled it just a little bit and gave it to Leah, she FREAKED out! She couldn't figure out how to pick it up and how it worked, she ended up getting so frustrated that I decided that it was not the time to for this kind of sippy cup. Last week, I decided we should try it again. This time was much better!! She immediately tried to pick it up with one hand, but realized that it would be too difficult, so she used 2 hands! I was so excited that she was able to do it!! She has been drinking from a sippy cup without handles so nicely ever since!

And so it begins!

2009-02-19T22:09:00.003-06:00

Today Leah got casted for her braces. Like I mentioned in my previous post she will be getting an AFO on her left leg and a SMO on her right. I can't believe that I'm totally ok with all of this! The amount of time we've been waiting for them has given me a lot of time to accept it and understand it.

Leah was fantastic during the casting! She only fussed a few times! It was so nice to be able to do it out of our house. Leah was comfortable with Barney on TV, a snack and a drink! It took about a half hour from start to finish. Now we wait for the braces to get here, shouldn't take more then a couple weeks!

My favorite part--designing her braces! This will probably be the only brace I ever completely decide on my own! By the time she is ready for her next one, I'm certain she will want to choose!

Approved!!!

2009-02-18T20:09:00.002-06:00

We have FINALLY been approved for Leah's braces!!! Thankfully it didn't take too (only a month as opposed to 2 months)long! Tomorrow, Leah will be casted for the braces (AFO on her left and SMO on her right), let's hope she sits nicely for the lady. We are fortunate to be able to do it out of our house and have the PT come here to do it. So, I'll plop Leah in front of the TV and hope that Barney or Elmo takes her attention off of what the therapist is doing. I'm looking forward to picking out the patterns and colors, hey--if my baby has to wear braces you better believe they are going to be the cutest darn braces you've ever seen! After tomorrow, we wait another week or two and then the braces should be here!

I'm getting nervous about finding shoes for Leah. She has never had a pair of real shoes and my PT has warned us that finding shoes to fit over the braces could be difficult! I'm hoping that I can find some good (and cute!) shoes easily once we get the braces!

Chuck E. Cheese

2009-02-16T21:57:00.005-06:00

We went to Chuck E. Cheese today for Leah's first time! It was way crowded because of Presidents Day, but Leah had a blast! We went with my little sister, Shelby, who is Leah's most favorite person in the world!

Leah was fascinated with the dancing and singing Chuck E! She was so excited by it!!!
When she saw him start to dance and sing, she yelled: OH!!!!!!

Leah could not take her eyes off of him!

Another Baby...

2009-02-09T21:10:00.002-06:00

(Disclaimer: I am not pregnant! Just wanted to make sure that is loud and clear! :))

I feel very lucky to have found an amazing group of friends in my community. They are all young couples, with one child. Avi and I pretty much fit right in when we first moved here. I love that we get together on the weekends as families,I have playdates with the stay at home mommies during the week, our husbands play softball and basketball together and our kids will grow up together. It has just worked out beautifully.

We all have children that are different ages, ranging from 3 to 3 months. Naturally, the progression would be to start adding on to our familles. So, that is what is happening now. I have quite a few of my friends who are now expecting their second child. (In the process of writing this blog, I got a phone call that another friend is expecting!) I'm thrilled for them, but I can't help but feel a bit jealous.

Leah is 16 months now, I don't think we are in the position for another baby right now (of course, if it happened we would be thrilled). Not only do I think that we are not in the position for another baby, but I don't think that I am emotionally ready for one.

Honestly, I am terrified. I am so afraid of carrying another baby and having something happen to that child. I am so jealous that my pregnant friends don't have these fears. While, I'm certain that they have some fears, they all have typical first children, so now they are pregnant and are blissfully taken to their happy place. I loved being pregnant with Leah (minus the morning, noon and night-sickness), I enjoyed it and was at that happy place. I just don't know if I'll be able to get there with my next pregnancy. I can only imagine that my fears would get the best of me. I find some comfort in knowing that I will be high-risk and monitored closely, but the what-if's are still VERY real.

I've done testing, it all came back perfect, minus the MTHFR which my doctor said presented itself in so many people (I think 60% of people) that it wasn't a cause for concern. The only conclusion anyone has had was that Leah's stroke was a fluke. But, how do I know it won't happen again?!

On a different note, I need to take into consideration, Leah, when thinking about adding to our family. How will it effect her to have a typical (god willing) sibling close in age? Will it push her to do more or have the opposite effect? Will she resent us because she has these special needs and her sibling doesn't?

Maybe it's just going to take me more time to get used to the idea of having another baby at some point. Which is exactly the reason for us not expanding at this time, well that and Leah is only 16 months old...I want to enjoy her as my little baby for bit longer!! I just can't shake the fears and the thoughts that I have all the time. Before I had Leah, I dreamt of having a large family and slowly that idea is fading into the background. I hate that I'm letting my fears get the best of me, but I just don't know what else to do.

I know a lot of you that read this blog have thought about expanding (or have expanded) your families...so I'm curious of your thoughts? How have you gotten past the fears? What tests did you have? Before we even consider trying, I need to know that I've done everything I could to prevent this from happening again.

Thanks for letting me vent! With all the happiness that I feel for all of my dear friends, I can't help but feel that bit of sadness for us.

Anniversary

2009-02-05T13:02:00.004-06:00

One year ago, I remember thinking that something was not right. I watched my little baby play on the floor and swat things with her right hand while her left hand just stayed still. At Leah's 4 month appointment with her pediatrician I decided to ask about it. He said that he didn't think it was anything but that we should get it looked at by an OT and a PT. I'm so grateful that he didn't brush us off and promptly got us a script for a therapy evaluation.

After that day, our lives changed. We were thrown into a world of doctors and therapies, of braces and splints, of CT scans and casting. It all happened so fast. After the evaluation, I jumped on the internet and saw things that I never thought I would see. I remember calling my husband crying and telling him I thought she had some kind of genetic disease and I remember calling my mom crying and telling her I found something else that it could be. I searched and cried and searched and cried, until I couldn't search and cry anymore. That week I cried more tears then I have ever cried in my life.

After we saw the OT and PT, we were refereed to a neurologist. I've never been as scared in my life as I was to go into that appointment. Before the appointment, I remember calling our pediatrician and asking him what he thought it could be. He said so matter-of-factly, oh it could be a brain bleed or a stroke. I remember thinking, A WHAT!?! My sweet baby, bleeding in her brain or having a stroke!

The neurologist was wonderful and very reassuring, she said that she wanted Leah to either have a CT scan or an MRI. We obviously opted for the CT scan, as with the MRI she would have to be put under. The neurologist said as long as they can read the results clearly on the CT scan we wouldn't have to do an MRI. After the CT scan, we left and a few days later we go a phone call that changed everything.

"Hello, can I speak to Amanda"

"Yes, this is"

"Hi, this is Dr. H, Leah's Neurologist"

"Yes..." The tears are running down my face.

"We got the results of Leah's CT scan, it turns out your daughter had a stroke, sometime in-utero."

...breath Amanda, breath... Stop crying and form words, you new this was a possiblity and no matter how hard you prayed that it wouldn't be reality, it is...get yourself together....

"Ok, Dr., what does this mean for her?"

"We'd like for you to come in again and we can't discuss, but definitely get her into therapy as soon as possible."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Within 10 minutes of that conversation my pediatrician called us as well and told us he was faxed over the results of the CT scan.

We started OT weekly and Leah has progressed from there.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When I think about those early days, I'm filled with those early emotions. The emotions ranging from pure and utter sadness to anger and heartbreak. I was down so far and I didn't know how I would get up. My daughter had a stroke, I thought the world was ending.

Little did I know, that Leah was a fighter. She won't let a stroke stop her. My emotions have drastically changed within this year. I'm not going to lie, sometimes I cry and sometimes I'm sad, but my smiles and happiness far out way the sad times. My daughter is strong. She will be able to do whatever she puts her mind too. I can't wait to look back on the anniversary of the day we got the news, in 5 years and see how amazing Leah is doing.

Active Grasp

2009-01-31T23:34:00.002-06:00

I'm so pleased with Leah's progress lately. I truly believe she is doing great things. She has surpassed my expectations for her large motor skills and is really perfecting her walking.

She has consistently had issues with her awareness and overall use of her left hand. She just didn't really care that much and got away with doing things one-handed. Recently, she has really become much more aware, it's almost at if the light-bulb turned on and she was like, hey look at this another hand! She holds things, such as a ball, with two hands now. She is always touching her left hand with her right and the other night during dinner she was putting spaghetti onto her hand and eating it off of it. It's nice to finally see her incorporating "lefty"! I've waited a long time to see even a hint of awareness!

Now, my concern is an active grasp. Leah tries so hard to put things in her left hand and she still can't figure out the opening and closing part. It's heartbreaking to watch because I know she gets it and she'll look at me when her hand doesn't open. It's almost like she is questioning why she can't do it. We work all the time on trying to get her to open her hand and grasp something, but she still hasn't mastered it. I can honestly say that once I see her do it, I will breathe a big sigh of relief. I know I shouldn't compare but I see so many hemi-kids grabbing things with their effected hand and I can't help but wondering when and if Leah will get to that point?

We do plan to cast Leah again in about 2 months. I'm hoping that will help her with her active grasp.

So, I'm curious if anyone has any great tricks to help us help Leah, we'd love to hear them! Also, any recommendations for amazing two-handed toys that help with grasp, would be great!

Gym Class!

2009-01-25T21:47:00.005-06:00

Leah started taking gym class about 2 weeks ago, at a place called My Gym. At first I wasn't in love with the class, but seeing all the great things they allow Leah to do, I'm sold! That and the fact that Leah LOVES it and cries every time we leave!

The class starts off with stretches (love the arm and leg stretches), then they set up different activities for the kids--bars, swings, balance beam, tumbling and so on. After the set activities, they have separation time, where the parents step back and let the kids interact with each other and the teachers. It's so cute! I love watching Leah play! To end the class they usually bring out a puppet and tell a story, then we sing our good-bye song!

I love that it's therapy without it having to be "therapy". Leah's OT and PT love that she is getting into it and really enjoying it! And Leah especially loves it, because it's fun!

Here are a couple videos of her walking into gym class last week!

Flashback Friday!

2009-01-23T10:51:00.002-06:00

Leah--2.5 months old

Potty Time!

2009-01-21T18:28:00.002-06:00

We've decided to start getting Leah used to the potty. We do NOT expect her to be potty trained yet, but we like the idea of her getting used to the potty. Our goal would be to have her fully trained by the start of the school year. The school she will be going too, will 100% take her, but that would be our goal. So, we'll see how she does with it! Right now, she loves to sit on the potty! Our basement bathroom is monkey themed (when we moved, I made it monkey themed especially for potty training!) and Leah loves to see the little monkey that holds the toilet bowl brush! She sits on the potty, which faces the monkey, and just talks to him the whole time! She would sit there forever telling the monkey a story! No pressure for Leah, but she seems to enjoy it and I think she looks too cute sitting there! :)

"Look Mom, TWO hands!"

2009-01-19T22:08:00.003-06:00

Last week, Leah had the best OT session in a long time! Her OT kept saying that once she walking more her OT sessions would get better and sure enough they did! Let's hope it continues to progress! I've been seeing "lefty" do some pretty awesome things lately, so that is great!

As for walking--I'm still hesitant to call it that--Leah is doing great though! She has amazing control of her balance! She will go about 10-15 steps before loosing control! I love watching her walk! It's just too cute!

Videos

2009-01-12T11:40:00.005-06:00

This video is of Leah from PT on Friday...

Here is the video of her "crying", she was done with therapy!

Here she is this morning, standing back up! If you listen closely, you can here her say "ah, ah, ah, ah-boo", she is pretending to sneeze! :)

Another one from today...I think the pj's make it hard for her, she keeps slipping in them!!

I know these aren't the best videos and they don't show the distance she can go, but I'll keep trying to get better ones!

In other news, Leah had her second speech evaluation and the ST said she is right on track! Yay!!!!

Tears of Joy!

2009-01-11T18:57:00.002-06:00

I've cried many tears this past year, many many tears! Sad tears, tears of fear, happy tears, tears of relief, you name it, I've felt it and probably cried about it.

Tonight, I can't stop crying the absolute best tears I've ever felt. This morning I watched my sweet Leah stand up her in ball pit--holding nothing, then I watched her do it in the middle of the floor, and then again in the ball pit. Then this evening I watched her stand up in the middle of the floor and walk across the room, she fell, put her hands down and got herself right back up!! My heart is filled with pride and sheer joy!!!!

I think she's there! On Friday, our PT said she thinks in a month she'll be fully walking--while I can't believe I'm admitting this...I think it will be MUCH, MUCH sooner!!!!

Update...

2009-01-09T12:52:00.002-06:00

Ok, here is the last and final update on the brace situation. I appreciate all of your feedback--It's been really helpful!

After a ton of stress and a few tears we have decided not to buy the brace ourselves. We will in fact be going through the state.

We have discussed this thoroughly with Leah's PT and OT and we all have decided that it will not make much of a difference right now. Leah is not walking yet, so that would mean that she would only be in the brace for an hour a day. The brace will only really "work" when Leah is more upright anyway. We are pretty convinced that Leah will be fully walking in the next month or so (she took 10 independent steps today!!!!), and we will get the brace from the state within 2 months. Our PT has pushed for us to get it within 2 months, rather then 4! We feel confident that our choice is the right one for us and for Leah. This was one of the hardest decisions we've had to make! It was a lot of money--but we would have found a way to make it work. We have decided that if in a month she is fully walking, then we can revisit buying the brace if we have not received it yet.

Leah's a superstar and is rocking out this taking steps thing! It's such a pleasure to see her take steps across the room! I took a video at PT today, but I waited until the end and she was not happy! She was crying while walking towards me! I'll try to get it up later!

Brace Yourselves...It's another post about "The Brace".

2009-01-05T21:28:00.003-06:00

If I didn't like the idea of the brace months ago, you better believe that after dealing with this for so long and continuing to deal with it--I still don't like the idea of it!

This brace will be the end of me...

I know, I know--once we have it,everything will be good! It's the getting it part that is driving me batty!

You see, my state apparently is dysfunctional (Blago anyone?!). Our PT was telling me that the Illinois State programs are notoriously S-L-O-W when it comes to certain things. Lucky (note the sarcasm) for us, one of those things is braces and orthodics. So, like I mentioned in my previous post we will be waiting for 3-4 months from NOW, if we go through the state. Well, we can't do that. We can not sit and wait for something, knowing that time will pass and we will have done nothing to correct the issues Leah is having. Since our insurance won't cover any of it--we've decided to foot the bill. Oh yeah, remember how I said it was going to be around $350--yeah, double that--that's what we will be paying. Happy freaking New Year!

Turns out that when the PT who does the casting gave me the price, she failed to discuss with me what Leah would need on her right foot. So, on top of a rather large brace on her left (effected) leg, she needs a smaller yet, still up to the ankle, brace on her right leg. :( I prepared for months for the left brace, I was finally ready--let's do it--and now I have to think about another brace. I thought we would just be able to get away with an insert--but nope, she is overcompensating too much and turning in her right foot. That's our story. I've made our PT promise me that the next brace Leah needs that we will start the state process well in advance.

Ugh. The Brace.

The Last Post of 2008...

2008-12-31T17:00:00.006-06:00

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!

I Knew You Could!

2008-12-29T20:40:00.003-06:00

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?

You will!"

One Foot in Front of the Other....

2008-12-26T15:25:00.003-06:00

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.

Why can't they make things a little easier?

2008-12-23T22:57:00.004-06:00

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.

Leah and her Aunt Shelby!

2008-12-23T12:18:00.004-06:00

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!!

Happy Holidays!

2008-12-22T09:54:00.004-06:00

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!!!!

Winter is here!!!

2008-12-16T22:17:00.001-06:00

YOU get it!

2008-12-16T21:59:00.005-06:00

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.

BABY STEPS!!!

2008-12-12T13:42:00.003-06:00

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!!

What's New?

2008-12-02T20:41:00.001-06:00

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!

Letting Go

2008-11-24T19:46:00.002-06:00

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!

Pigtails!

2008-11-20T15:10:00.002-06:00

YEEE--TAHHHH!

2008-11-16T11:29:00.002-06:00

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!?!

Physiatrist Appointment

2008-11-13T14:54:00.002-06:00

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!

Lots O' Videos!

2008-11-10T20:31:00.009-06:00

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.

Sunny Days!

2008-11-09T09:20:00.004-06:00

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.

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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...

CIMT--Update.

2008-11-03T22:30:00.007-06:00

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!

Let's try this again!

2008-11-02T21:11:00.003-06:00

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!

The "B" Word...

2008-10-27T19:19:00.003-05:00

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...

CIMT--pics and videos! (Finally!)

2008-10-23T21:18:00.005-05:00

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...

AHA Start! Walk

2008-10-23T14:28:00.003-05:00

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

Sorry...

2008-10-15T20:32:00.002-05:00

...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.

Casting Update!

2008-10-10T15:39:00.003-05:00

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!!

Preschool, Already!?

2008-10-08T10:17:00.002-05:00

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!!!!

A New Day, A New Cast!

2008-10-06T20:40:00.002-05:00

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!

Casting?? --Day 3

2008-10-05T11:20:00.007-05:00

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!?!

Casting-Day 2

2008-10-04T21:01:00.005-05:00

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.

Casting: Day 1

2008-10-03T17:25:00.005-05:00

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.

Casting: The first few hours.

2008-10-02T18:51:00.004-05:00

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.

Tomorrow is the day

2008-10-01T21:12:00.004-05:00

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!

Happy Birthday!!!

2008-09-25T08:31:00.004-05:00

HAPPY FIRST BIRTHDAY, LEAH!!!!!

What Lies Ahead!

2008-09-23T22:20:00.004-05:00

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!

Happy Birthday...

2008-09-22T10:11:00.003-05:00

TO ME!

(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!!

Casting Nerves

2008-09-16T21:31:00.005-05:00

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. :)

Cruisin'...Really!?!

2008-09-12T17:34:00.005-05:00

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)

Water Therapy...fun?

2008-09-11T20:45:00.003-05:00

Today was Leah's first day of water PT. I really had high hopes that she was going to love it...yeah, not so much. In fact she screamed about 98% of the time. We arrived at the pool--Leah in her bikini--and Lisa the therapist took Leah into the water. Literally the second she hit the water the tears came pouring out! Lisa asked me to sit at the edge of the pool, so I did. Leah still screamed! Lisa asked me to step out, to see if then she would calm down. So, I did and she continued to scream. I spent the rest of the 45 minute session standing outside watching my baby cry in the pool. She did calm down every once in awhile, but it always ended with tears. It was not enjoyable for me to watch her be so upset, but I want this therapy to work. I know that in time she will really love water therapy. She loves the water, I just think it was the new environment and new people. Next week, I will get in the water with her, we will see how it goes!

P.S. Does anyone come around here anymore?? Let me know your visiting! I'd love to hear from you! :)

We Have A Date!!!

2008-09-08T14:58:00.002-05:00

We are officially doing Constraint Induced Movement Therapy on...October 2!! I'm really looking forward to it, but I am SO nervous! We are going to cast her fully for 1 week, then we will most likely bi-valve it and make it removable. It will be kind of fun to have her casted for the American Heart Association Walk! (Sarah and Erin--you'll get to see it first hand!)

I can't believe we actually have a date! It's exciting!! I hope Leah responds well too it! If anyone has any advice, we welcome it!!

Lots and Lots of Giggles!!!

2008-09-04T13:59:00.003-05:00

Ups and Downs

2008-09-02T13:56:00.005-05:00

I knew this would happen. The past few weeks Leah has been a rockstar, she has done so many amazing things. I'm one proud Mama! BUT, whenever she has a few REALLY good weeks and I'm feeling so UP about her progress comes the DOWN part. That's now. I hate the down part, the part where I get sad, the why my baby part.

This is my down right now, Leah is pulling up on everything! I walk into her room after every nap and in the mornings when she wakes up and there she is standing. It's great to see her there, but then I've been really watching her and she is entirely using her right side. Lefty is nowhere to be seen when pulling up. I know that she doesn't have the strengh in that arm, but I would like to see her using it a little bit more.
Then yesterday we went to a picnic with all of our friends who have children 2 and under. I was watching one of the little girls and she was eating corn on the cob, one hand on each side perfectly supanted. Yes, this made me sad. Leah has a hard time with supanation and at that moment I just couldn't imagine her eating the corn the way that little girl was. I know Leah will find a way to eat the corn, but it was just that moment that my heart hurt a little. After the corn incident, my friend (who knows about Leah's hemi) was holding her and was asking for high fives, Leah happily obliged with righty, my friend said "can you do it with your left" in which Leah did nothing. I feel like the complete non-use of lefty is becoming more apparent. I know she can use lefty--she just chooses not too, it's just too much work right now.

I love the ups but hate knowing there is going to be down soon after.

Time to Baby Proof!!!

2008-08-28T17:13:00.007-05:00

Leah has had a skill explosion in the past 2 weeks!

*She mastered four point crawling (still army crawls about 20% of the time)

*She has started babbling a ton, Dada, Baba, Gaga, Hi...yet no Mama!!

*She has started pointing at things.

*She says "Hi" when she waves. She loves to wave to everyone in the store! The older ladies in the store love when she waves to them and they think it is an invitation to come and talk to her, this makes grocery shopping impossible! Although, I do love all the great compliments I get! ;)

*She is totally pulling up everywhere now.

*As of today, she has mastered the stairs! We have been working on the stairs in PT for a couple weeks now. Leah's PT kept saying that she doesn't expect Leah to be able to climb the stairs yet. Well, I'm pretty sure Leah heard that and was out to prove her wrong, because she mastered 8 stairs on her own today! The baby gate is now UP and there to stay!!

Sorry about the video being all over the place! I was super afraid of her falling!! Oh and just turn your head to the side while watching half of it! :) I have no idea why I turned the camera!! Again, Sorry!!

MMR Vax

2008-08-25T14:34:00.007-05:00

Well, Leah is 11 months old today!

One more month until a year!

This has gotten me thinking a lot about her 12 month vaccinations. I have always gotten all of vaccines for Leah and I'm not anti-vaccine, but I am really worrying about the MMR vaccine. I have done a bit of research on it and some of the things make me a little nervous. One thing is the obvious one, Autism. I know that people waiver on whether this vax really does cause Autism. There is a bit of information that it is linked and that's enough for me to be concerned. Leah already has one thing going on--do I really want to put her at risk for another? I wouldn't be as worried about this, but I did just hear a story about someone who my family knows personally. His son was very typical and on track developmentally, he got the 12 month vaccines and completely stopped babbling and would sit and stare into space. They eventually diagnosed him with Autism.

The second thing that freaks me out is that one of the side effects could be brain swelling. This is a VERY small percent, but it has happened. I worry mainly about this one, because we already know that Leah does not have a fully functioning brain. There is a part of it that was damaged by the stroke. So, what does this side effect mean for her? Would she be more at risk because of her stroke? What are the possibilities that she could have another stroke because of this?

The third thing that makes me nervous is the risk of seizures. There is a percentage of children who have a reaction the the MMR that have seizures--yes they are febrile seizures--which are often not harmful to the average child, but where does that put Leah? She is already at a higher risk for seizures, so if she reacted with febrile seizures would they be harmful to her? Could it lead to regular seizures?

I guess at the end of the day my question is...Is Leah at more of a risk then a typical 12 month old? If it is the same risks then I think it would be a risk we are willing to take. If her risk for any of these side effects is higher then I just don't know if we can knowingly do that. Then if we decide not to do the MMR, how will the schools be when she needs to go to school!

I'd love to hear what some others have done in the this situation. Did you choose to go through with the vax and why? Did you choose not to vax? Did any of you address your doctors with any concerns regarding this or any other vaccinations? Please share your thoughts with me.
Thanks!!

A week of firsts...in video!

2008-08-18T21:28:00.006-05:00

First Ice Cream! She LOVED it!!

Crawling on all fours!!!

First spaghetti at a resturant! Again, she LOVED it!

Go Leah!!

2008-08-14T09:41:00.003-05:00

Yesterday was OT day...

When Lisa got here we were talking about how Leah's week was and if there was anything new. While we were talking I put Leah on the floor to play. I told Lisa about Sunday when Leah went a few small moves forward on all fours. She was very excited! All the sudden we look at Leah and there she goes on all fours!!!! It was like she heard what we were talking about and wanted to prove it too Lisa!!! Lisa was amazed! She said she didn't expect Leah do be 4-point crawling this soon!! AWESOME!!! GO LEAH!!

Then this morning, I was checking my email and Leah was playing on the floor with her toys. I look over to check on her and I see her standing up on her laugh and learn toy table!!! I definitely put her down sitting!! She pulled herself to standing!!!

What a week!! Yay for Leah!!!

Today we had a speech evaluation. The speech therapist would like to see Leah weekly! I was somewhat relieved and somewhat sad. I so badly wanted her to say that she didn't need ST! But, I'm glad that we are doing it sooner rather then later. I'm certain that once Leah gets a little help she will be talking my ear off! I can't wait!

Childhood Stroke In The News Again!

2008-08-12T10:14:00.004-05:00

Just thought I would share the link. It's a decent article, not the best--but it's getting the word out there, so that is good!!
http://www.chicagotribune.com/features/lifestyle/chi-0812-health-strokeaug12,0,4530329.story

Awesome!

2008-08-11T11:05:00.004-05:00

I know this blog is supposed to be all about Leah, but I just had to give a nod to one of the best moments I've ever seen on TV!!!!

The US team won the 400 meter freestyle relay, after the French talked smack earlier in the day! Ha! That is right! I've never been that into the Olympics, but my goodness this year I'm addicted and it's because moments like the one last night!!

When the last swimmer, Jason Lezak dove into the pool for the last lap he was trailing behind Frances Alain Bernard, the world record holder. With 20 meters to go, he pulled out from behind to win by 0.08 seconds. The reaction of the rest of the US team, including Michael Phelps was amazing!! We were all screaming in my house, I'm surprised Leah slept through it!! It was a great moment!! If you weren't able to catch it I would definitly try to find it on Youtube! It's worth it!!

On the other hand...US womens gymnastics leaves a bit to be desired. They are the best we have in the US? Ugh.

All fours

2008-08-10T21:52:00.005-05:00

Today, Leah was so much better! I think the sickness had left our house, finally!!

We didn't do too much today. It was a fast day for us, so we didn't eat or drink anything for 24 hours. Not so fun, but that was the point of the holiday. Anyway, we hung around and played with Leah in the house.

She has been getting up into 4-point (crawling) position for awhile now, she will just get up and rock. When she wants too move she will go to her one armed army crawl, which she has gotten down pat. She moves so fast when she army crawls. Today though, she got up into 4-point and was there for awhile. My heart litterally stopped and I was like oh my gosh, she is going to do it!! I really thought she was going to just take off in 4-point!! Well, she didn't exactly take off, but she did move a few little 'steps' forward!! I was so excited! I'm not sure if it was a fluke or if she is really ready to continue. I guess we will see as the week goes on. Either way, it was a very exciting moment!

Hope you all like the new look! :) I thought it was time for something a little more fun!

Oh and the picture above is when Leah got stuck underneath her toy table! Too funny!!

A Losing Battle?

2008-08-07T10:19:00.005-05:00

Leah is still sick, although I do think she is on the tail end now! Of course, I caught what she has, but oh well--life goes on! I'm feeling ok, just congested! Anyway, I posted a few weeks ago about Leah loving bathtime. Oh boy, she loves it! She splashes, kicks and chases her ducky around. I love giving her a bath, she is so funny! EXCEPT, now she has started making bathtime very difficult for us! The only bathtub in our house has glass sliding doors, definitly not our first choice and if we buy this house they will be the first to go. The doors make is hard to give her a bath, but worst of all there is a little ridge on the side of the tub. This ridge is so annoying, 1) because it hurts to lean on, therefore making it almost impossible to wash Leah without being in pain and 2) because Leah has discovered that is makes the perfect handle to pull up on! Now the entire bathtime Leah tries to pull to up and I am constantly saying no and putting her back down. I feel like this is a losing battle and that it's only going to get worse! Once she is able to pull into standing, I have no idea how I'm going to beable to stop her! She's only 10 months and well she just doesn't care that "no" has a meaning. Leah is a smart cookie--she understands so much of what we say...except for no. Or, she understands and is just ignoring it!! The pulling up in the bath makes me so nervous! She will pull to her knees and then start to tip over. UGH! I even thought about putting her back into her baby bathtub, but that wouldn't be fun for either of us! I guess we will just have to keep telling her no and hope that she understands!!

This video is from last week, for some reason I couldn't upload it then. Anyway, I just think her "silly face" is too funny!! Please excuse the messy face, she had just ate blueberry applesauce!