Baby!

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

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?

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!!!

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!!!

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.

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?

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!