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!

Happy Father's Day!!!

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

Vacation!!

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.

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

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!