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!!
Friday, November 20, 2009
Leah is going to be a BIG SISTER!
Posted by Amanda at 11:12 AM
Thursday, October 22, 2009
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!
Posted by Amanda at 9:53 AM
Thursday, August 27, 2009
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!
Posted by Amanda at 9:59 PM
Friday, August 14, 2009
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!
Posted by Amanda at 11:36 AM
Monday, August 10, 2009
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!
Posted by Amanda at 9:18 PM
Tuesday, July 14, 2009
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.
"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.
Posted by Amanda at 8:54 PM
Sunday, June 28, 2009
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!
Posted by Amanda at 11:09 PM
Saturday, June 20, 2009
Posted by Amanda at 11:32 PM
Tuesday, June 16, 2009
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...
Posted by Amanda at 9:06 PM
Thursday, June 4, 2009
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!
Posted by Amanda at 1:57 PM
Monday, June 1, 2009
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!
Posted by Amanda at 7:36 PM
Sunday, May 24, 2009
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!
Posted by Amanda at 10:21 PM
Thursday, May 21, 2009
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!!!
Posted by Amanda at 8:27 PM
Wednesday, May 20, 2009
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!
Posted by Amanda at 9:30 PM
Saturday, May 16, 2009
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!!
Posted by Amanda at 11:21 PM
Thursday, May 14, 2009
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!
Posted by Amanda at 8:19 PM
Tuesday, May 12, 2009
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!
Posted by Amanda at 8:05 PM
Tuesday, May 5, 2009
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!!
Posted by Amanda at 9:20 PM
Thursday, April 30, 2009
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!
Posted by Amanda at 9:17 PM
Tuesday, April 28, 2009
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!
Posted by Amanda at 8:49 PM
Friday, April 24, 2009
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!
Posted by Amanda at 10:08 AM
Thursday, April 16, 2009
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!!!
Posted by Amanda at 8:54 PM
Monday, April 6, 2009
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!!!
Posted by Amanda at 7:32 PM
Monday, March 30, 2009
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!?!
Posted by Amanda at 2:07 PM
Sunday, March 29, 2009
Wednesday, March 25, 2009
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!!
Posted by Amanda at 9:06 PM
Thursday, March 19, 2009
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!
Posted by Amanda at 9:21 PM
Tuesday, March 17, 2009
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!?!
Posted by Amanda at 7:08 PM
Monday, March 16, 2009
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!
Posted by Amanda at 1:09 PM
Thursday, March 12, 2009
Tuesday, March 3, 2009
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.
Posted by Amanda at 5:14 PM
Wednesday, February 25, 2009
Please excuse my horrible singing!!! But enjoy her adorable singing! :)
Posted by Amanda at 9:01 PM
Posted by Amanda at 8:57 PM
Sunday, February 22, 2009
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!
Posted by Amanda at 9:34 PM
Thursday, February 19, 2009
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!
Posted by Amanda at 10:09 PM
Wednesday, February 18, 2009
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!
Posted by Amanda at 8:09 PM
Monday, February 16, 2009
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!
Posted by Amanda at 9:57 PM
Monday, February 9, 2009
(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.
Posted by Amanda at 9:10 PM
Thursday, February 5, 2009
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.
Posted by Amanda at 1:02 PM
Saturday, January 31, 2009
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!
Posted by Amanda at 11:34 PM
Sunday, January 25, 2009
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!
Posted by Amanda at 9:47 PM
Friday, January 23, 2009
Wednesday, January 21, 2009
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! :)
Posted by Amanda at 6:28 PM