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!

OT Struggles

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."

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!

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!