tag:blogger.com,1999:blog-32443661200692122782024-02-20T07:28:38.485-06:00Princess Leah's Journey“To get through the hardest journey we need to take only one step at a time, but we must keep on stepping”Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.comBlogger133125tag:blogger.com,1999:blog-3244366120069212278.post-85971657638735377072010-06-11T09:34:00.005-05:002010-07-27T21:33:40.079-05:00Welcome Baby Zach!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizT7kNATlLOmXLUqtSFM5NmGT9sw9adqg9LoNwkSu3is1pQsC2m_SOSLDmwW9KKAUdfwyFq-klhITWsZlmquoTM4qn7AK83vHWpP1YDxP0duq4JKoqcM6GNXxEsBKho3i8mc3_P0Yy73U/s1600/Baby+Boy!+037.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizT7kNATlLOmXLUqtSFM5NmGT9sw9adqg9LoNwkSu3is1pQsC2m_SOSLDmwW9KKAUdfwyFq-klhITWsZlmquoTM4qn7AK83vHWpP1YDxP0duq4JKoqcM6GNXxEsBKho3i8mc3_P0Yy73U/s320/Baby+Boy!+037.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5481525098296018178" /></a><br /><br /><br />Tuesday June 1, at 8:07pm...we welcomed our beautiful baby BOY into the world! What a wonderful surprise that it was a boy! <br /><br />After a 12 hour labor and virtually no pain meds (my epi didn't take) our baby was born! <br /><br />Leah is loving Zach! She's a great big sister! <br /><br />We are just taking things one day at a time, trying to get used to being a family of four!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com4tag:blogger.com,1999:blog-3244366120069212278.post-15505930036297539012010-04-01T19:15:00.002-05:002010-04-01T19:27:05.802-05:00Botox and Casting!A brief update for the 2 of you that still come to this blog! :) <br /><br />Last Friday Leah had her first round of botox. I have to admit that I was horribly nervous about it, to the point where when the doctor walked into the room I broke down in tears. I often HATE that Leah has to go through these painful things, but I have to remember that in the end 9 times out of 10 they are worth it. I had spoken to many parents who were very pleased with the outcome of botox with their hemi-kids, the therapists were encouraging it and I completely trust our physiatrist. So, with all that said we went and did it. It was over in about 20 seconds, Leah sat on my lap, got one botox shot in her calf and one shot in her forearm. She screamed, I cried, then I gave her a large chocolate lollipop and all was forgotten! Thankfully, she had no reaction to the botox and no pain. We started to see results 2 days later. Her hand has a beautiful relaxed position--the tone is almost completely gone. We are now able to stretch her foot into a neutral position, where before we could only get it to a 90 degree angle. She looks great and her therapists are overall very happy with the way she is looking. <br /><br />When we decided to do the botox, Leah's doctor suggested that we do a round of casting right after the shots. So, today Leah started another round of Constraint Induced Movement therapy. I always get incredibly anxious before the casting happens because I never know how he is going to react. She is so amazing! She sat through the casting process beautifully, laughing and talking the whole time. She has had the cast on for about 7 hours now and has not complained once. She is such a trooper! I'm looking forward to seeing how the therapists work with the botox and casting together! Hopefully, this will have great results! <br /><br />As for me, I'm now almost 8 months pregnant and getting ready for the baby! Leah is SO excited and loves kissing my tummy and telling the baby "I love you". When we ask her if she wants the baby to come out she lifts up my shirt and tells me she wants to pick up the baby, while trying to lift my tummy. She's going to be a great big sister! <br /><br />I know I say this every time, but hopefully I'll update sooner rather then later! Thanks for the few of you who still come and check up on us!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com6tag:blogger.com,1999:blog-3244366120069212278.post-25705315857329313202010-01-21T21:53:00.003-06:002010-01-21T21:58:35.345-06:00Baby!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8OYusfNy1EsGlzxDEH8xiZBGa8kKm6ohK5nft-ZoRhLaNjpEUkqHpREY3KV4tN6oestMMUUZWv7tnY5VK4yFQIexf-N29PJz-ET_c_T0ogesuIKx-c6sHRUwdjN-rPAO_MmU3U6mAN98/s1600-h/baby+007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8OYusfNy1EsGlzxDEH8xiZBGa8kKm6ohK5nft-ZoRhLaNjpEUkqHpREY3KV4tN6oestMMUUZWv7tnY5VK4yFQIexf-N29PJz-ET_c_T0ogesuIKx-c6sHRUwdjN-rPAO_MmU3U6mAN98/s320/baby+007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5429408627520518706" /></a><br /><br /><br />We had our "big" level 2 ultrasound on Tuesday, thankfully everything looks great! We are so relieved, but we still know that in the 20 weeks I have left things could happen. The doctor has decided that we are going to do monthly ultrasounds just to keep an eye on things and then at 34 weeks we'll do another Level 2 ultrasound. <br /><br />The level 2 ultrasound was the coolest thing ever! We saw every single detail of the baby--well, almost every detail--we're still keeping the sex of the baby a surprise! <br /><br />I'm feeling a weight lifted as I was very nervous about this ultrasound. Until the next ultrasound, then I'll be nervous again!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com5tag:blogger.com,1999:blog-3244366120069212278.post-55020691127719523272010-01-12T16:30:00.002-06:002010-01-12T16:39:06.480-06:00Physiatrist AppointmentToday Leah had her appointment with her physiatrist. It went really well! I really like the Dr we see, she is always so positive! <br /><br />She thinks Leah looks great and loves seeing her improvements! She does feel like her leg is getting a bit tighter and thinks that is because she is growing. She feels like Leah could benefit from some botox in her leg, within the next couple of months. She also said that she recommends if we are going to go ahead with the botox in the leg, that we do a bit in her arm as well. She wants the arm botox to be followed by Constraint Induced Movement Therapy (Casting), she believes we will see the best results by doing it that way. <br /><br />I did get a chance to discuss my questions about Cord Blood. We didn't bank Leah's cord blood, but thought we'd look into banking this babies. I wanted to discuss banking this babies cord blood and possibly using it for Stem Cell Therapy for Leah. She said that she has not seen results from doing the Stem Cell Therapy on someone as high-functioning as Leah. She encourages us to research and make the best decision, but she went on to say that we really need to weigh the amount of time, the travel, the expense etc. She said that she has seen many parents go into the SCT thinking that their child will be "cured" and in turn the results are very minimal. She believes that Leah will be able to do everything a typical person can and at this point in time does not believe that stem cell therapy is the way to go...although she highly encourages banking the cord blood. Anyone have any thoughts? Or experiences with any of this? I'd LOVE to hear it!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com5tag:blogger.com,1999:blog-3244366120069212278.post-80359166122254646442010-01-07T19:58:00.002-06:002010-01-07T20:20:39.988-06:00What's The Word?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS5iaHj8MprsFM2nJYPn_IhCgUdLBlBrIbgNRm-AVJ7vty6kVUxQoAFYtDaeZz7JwIypnxrBvVmAjhIPHalIttyKWkm_-oBcHj4kgAlDvMa7UuRr-fKSqCfwYKY5CKPa3YemSpVtjcXRM/s1600-h/Thanksgiving+2009+045.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS5iaHj8MprsFM2nJYPn_IhCgUdLBlBrIbgNRm-AVJ7vty6kVUxQoAFYtDaeZz7JwIypnxrBvVmAjhIPHalIttyKWkm_-oBcHj4kgAlDvMa7UuRr-fKSqCfwYKY5CKPa3YemSpVtjcXRM/s320/Thanksgiving+2009+045.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5424188168935218610" /></a><br /><br /><br />Well, it's been a little over forever since I've last posted! Many things have gone on in since I last updated, so I'll try to recap! <br /><br />Leah is little miss personality these days! She is talking SO much lately. She did start speech therapy about a month ago--but missed 3 weeks due to the holidays, so she really only had two sessions of speech. Today was her third session. In the first two the speech therapist said she is talking a lot, but that she needs to work on putting two words together. Well, the three weeks she was off she started on her own putting two words together and is doing it consistently now. The ST, Christine, was thrilled to see the progress today, and now said to work on putting three words together! It's always something...oh good you got this, now work on this! Anyway, Leah is non-stop talking to us, but her teachers are still not hearing her talk, which is frustrating since I know she can do it! Hopefully soon she'll open up to them! <br /><br />OT is going well, we have been taping Leah's hand in knesio tape for the past couple of months and I LOVE (LOVE, LOVE) the way she looks in it! Her movements are so natural and precise when taped! She still has no active grasp, but she does have full use of her arm and uses it as an assit. Just this week she started to initiate a grasp which is definite progress! We plan on casting again in the next month or two. <br /><br />PT is fantastic! Leah is incredibly on point with her gross motors, which is always great. She is still wearing an AFO on her left leg and an SMO on her right. I had a lot of concerns in the beginning in regards to how she looked in the AFO, because she was turning her foot in SO much, but thankfully in the past couple weeks she has self-corrected and is almost not turning in at all anymore! <br /><br />All of Leah's therapists have kicked me out of the room. We realized that she was using me as a crutch and actually does a lot better without me in the room! She goes to her OT and PT without hesitation, but her ST she is a little more weary of. I think once we get on a routine with the ST she won't be as upset to go without me. <br /><br />We have an appointment with Leah's physatrist next week, so I always look forward to hearing what she has to say. <br /><br />As for me, I'm now just about 19 weeks along and feeling good! We go in soon for our big level 2 ultrasound which is exciting and VERY scary at the same time. I'm praying for only good news. We won't be finding out the sex of the baby, so this ultrasound is strictly to make sure everything is looking good. As it gets closer, I get more nervous. I just don't know how I feel to find out if something (god forbid) is wrong. We already turned down all the prenatal testing, because I want to just enjoy the pregnancy and I worry enough without knowing what's going on. I'm praying for only good news...please keep us in your thoughts in the next couple weeks! <br /><br />Other then that, I'm loving feeling the baby move all the time! I'm convinced that he or she is going to be born with dreadlocks all the way down to their ankles, with the amount of heartburn I've been having! (You know what they say, heartburn=a full head of hair!). We've been checking out double strollers and planning on getting the room in order soon (basically just cleaning it out!). We want to move Leah into a big girl bed in the next month or two, so we'll need a place for the crib and the dresser! We are also hoping to get Leah potty trained and RID OF THE PACI before this baby comes! God help us as the paci ridding is no easy feat! She's obsessed...anyone have any good tips? All day she asks for her "Faci"...she hasn't quite gotten the "p" sound down yet. So, lots to do before the baby is born in June! <br /><br />That's about it for now!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-36923495676019396482009-11-20T11:12:00.003-06:002009-11-20T11:13:58.104-06:00Surprise!!!Leah is going to be a BIG SISTER! <br /><br />We couldn't be more thrilled to welcome a new baby into our lives! <br /><br />So, June 2010 we will be a family of four!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com5tag:blogger.com,1999:blog-3244366120069212278.post-69164771559723238282009-10-22T09:53:00.003-05:002009-10-22T14:31:15.362-05:00Yikes...it's been awhile!!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3818W-CbkRtfqWDmi0oBgq1Hh1RwccJp_A7CGLtZxyNhW9AOmMC9Kbd5BWHQUp9nWZiTYwyUfc38XKj1Hij83az95qHYVLcZYOiXjeco5-IigM_iglUlwHLPLgff-11lihTZ_p-UoVk/s1600-h/Bday+party!+022.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3818W-CbkRtfqWDmi0oBgq1Hh1RwccJp_A7CGLtZxyNhW9AOmMC9Kbd5BWHQUp9nWZiTYwyUfc38XKj1Hij83az95qHYVLcZYOiXjeco5-IigM_iglUlwHLPLgff-11lihTZ_p-UoVk/s400/Bday+party!+022.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5395442240619471058" /></a><br /><br /><br /><br />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! <br /><br />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! :)<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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! <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com4tag:blogger.com,1999:blog-3244366120069212278.post-48480420293802114442009-08-27T21:59:00.003-05:002009-08-28T13:59:13.498-05:00The 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! <br /><br />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. <br /><br />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. <br /><br />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! <br /><br />I knew it! <br /><br />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! <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com5tag:blogger.com,1999:blog-3244366120069212278.post-46513868769024231252009-08-14T11:36:00.003-05:002009-08-14T11:39:56.972-05:00E-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. <br /><br />Has anyone ever done E-Stim before? Or heard anything positive or negative before? <br /><br />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. <br /><br />I'd love to hear of any experiences with E-Stim! Thanks!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com4tag:blogger.com,1999:blog-3244366120069212278.post-45592781071577493842009-08-10T21:18:00.002-05:002009-08-10T21:35:37.382-05:00OT Struggles<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5AP4-9vsMVOeMfpQezqooeLdhJxQNBriiTp4OuOp6hngmwVkspI7wLymdkLNg1gowyIBwLlWbqxFVKKod7Gdk3ze2GeVeI_fVJ88a7GvzPVTNeWgXw8CxUBlG-VIarlm6szC-fJiN3LQ/s1600-h/August+2009+007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5AP4-9vsMVOeMfpQezqooeLdhJxQNBriiTp4OuOp6hngmwVkspI7wLymdkLNg1gowyIBwLlWbqxFVKKod7Gdk3ze2GeVeI_fVJ88a7GvzPVTNeWgXw8CxUBlG-VIarlm6szC-fJiN3LQ/s400/August+2009+007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5368529207032758306" /></a><br /><br />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. <br /><br />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. <br /><br />Sounds great, right? Right!<br /><br />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. <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-86448090786608500802009-07-14T20:54:00.004-05:002009-07-14T21:53:44.771-05:00"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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />A direct quote from the doctor, who worded it much better then just a fluke, is: <br /><br /><strong><em> "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"</em></strong><br /><br />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. <br /><br /><br />He went on to write: <br /><strong><em>"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."<em></em><strong></strong></em></strong><br /><br />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! <br /><br /><br />I have to say that speaking to him and knowing that he knows his stuff was very interesting. <br /><br />He writes: <br /><strong><em>"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." </em></strong><br /><br /><br />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". <br /><br />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. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7avhRuu_rb76Z6of1WYMWlyuuCfgXuQVGrPMIw20ed8TMlDJCMIKEheIzHuiD8r9azXpQj4fVodKzQW9Kf8Mp_2YNSB-y7Y-QkMS3X3ke5Hpz0MWcrnFyJ_opTcimfum4Lrjk_IgC7kQ/s1600-h/Princess+Leah+013.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 204px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7avhRuu_rb76Z6of1WYMWlyuuCfgXuQVGrPMIw20ed8TMlDJCMIKEheIzHuiD8r9azXpQj4fVodKzQW9Kf8Mp_2YNSB-y7Y-QkMS3X3ke5Hpz0MWcrnFyJ_opTcimfum4Lrjk_IgC7kQ/s400/Princess+Leah+013.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5358514456661914098" /></a>Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com2tag:blogger.com,1999:blog-3244366120069212278.post-42064099854187607322009-06-28T23:09:00.003-05:002009-06-28T23:20:20.555-05:00Summer Fun!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiWmuIJ127irh-0v8XR0ogJELP7PB0jkZjYM9SRz4FasaBGYJd_f_4iXwb_pUmbQ3p96MrOfNuNhEib2PcMXz3T2sXxoaOIaWApmZRt3eW7wyWYgGjVdfyx_7EZjPmsBHJS-zNMhfu-aQ/s1600-h/Father's+Day+042.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiWmuIJ127irh-0v8XR0ogJELP7PB0jkZjYM9SRz4FasaBGYJd_f_4iXwb_pUmbQ3p96MrOfNuNhEib2PcMXz3T2sXxoaOIaWApmZRt3eW7wyWYgGjVdfyx_7EZjPmsBHJS-zNMhfu-aQ/s320/Father's+Day+042.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5352599576320019154" /></a><br />Sorry for the lack of blog posts!! We've been enjoying summer!! <br /><br /><br />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! <br /><br />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! <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com1tag:blogger.com,1999:blog-3244366120069212278.post-83903049893959404072009-06-20T23:32:00.005-05:002009-06-20T23:45:58.698-05:00Happy Father's Day!!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg21qKlNbTSP-aUD95S8WQ7d-CYzV29b2u70qonkGap-qEABUYFoqn6_jeDGJkJP0B0WEoGyiKP0B2xxsJyrUqNwOCH0ooU656nib0pmJzhak_x1t8f_OuS8-w3fypkjG61VFJeCGmRIxo/s1600-h/avileah.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg21qKlNbTSP-aUD95S8WQ7d-CYzV29b2u70qonkGap-qEABUYFoqn6_jeDGJkJP0B0WEoGyiKP0B2xxsJyrUqNwOCH0ooU656nib0pmJzhak_x1t8f_OuS8-w3fypkjG61VFJeCGmRIxo/s320/avileah.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636707132230962" /></a><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2cvYPNL30QeP4K7V8FHh5RyeOLj0gQ75vT7fdJLODNVUXhh06EqDlXkorIs-eWVEt49_Css8m-obD4enqjdAt_PlJJjvhkTjMR9jJqdvgeYB3d9UGPH5v6y9i3_ubg8vAlrJbnsrTuVc/s1600-h/avileah1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2cvYPNL30QeP4K7V8FHh5RyeOLj0gQ75vT7fdJLODNVUXhh06EqDlXkorIs-eWVEt49_Css8m-obD4enqjdAt_PlJJjvhkTjMR9jJqdvgeYB3d9UGPH5v6y9i3_ubg8vAlrJbnsrTuVc/s320/avileah1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636704999851010" /></a><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRFNwrgjGC_n-37xsS3iP0wo64MDvtj3jGMzZ00NkxXvIh_fmida3-Tenl_BFlLhAVi0Vr4mVOWZDI8dtIjWWynkRdaiEtgt0PU9Y3iSL4la4rV26yPK9qCE9DtRuE5GThBpz1SBkNpyY/s1600-h/avileah2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRFNwrgjGC_n-37xsS3iP0wo64MDvtj3jGMzZ00NkxXvIh_fmida3-Tenl_BFlLhAVi0Vr4mVOWZDI8dtIjWWynkRdaiEtgt0PU9Y3iSL4la4rV26yPK9qCE9DtRuE5GThBpz1SBkNpyY/s320/avileah2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636709529700402" /></a><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5a8BK6qqaK8qz4lV5HgDgsQzBy5EIc64ixxX2HmUSadWMJexdJUGqLENEpwHrP1Cy1euGYxDRDbpOolD49C7BZjuBjHNkutaZOrMfCPTdTwBbXlhmruQXVkikTMRlLCj2cPgnNqst5s/s1600-h/avileah5.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5a8BK6qqaK8qz4lV5HgDgsQzBy5EIc64ixxX2HmUSadWMJexdJUGqLENEpwHrP1Cy1euGYxDRDbpOolD49C7BZjuBjHNkutaZOrMfCPTdTwBbXlhmruQXVkikTMRlLCj2cPgnNqst5s/s320/avileah5.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636716275569154" /></a><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitbYmlR9MHQzsM3D-WlUD1wUNYBBiZsxOui2hNfelhslgv0AmT-yrdRKlB5rb07AjYZ-qLlEsnBSTfye2V6V3-q52hQa4p0y-bAXzfy4-LxEIp4vuOItUeqXQj9enc2iUU0qMuWQ0DiVg/s1600-h/avileah6.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitbYmlR9MHQzsM3D-WlUD1wUNYBBiZsxOui2hNfelhslgv0AmT-yrdRKlB5rb07AjYZ-qLlEsnBSTfye2V6V3-q52hQa4p0y-bAXzfy4-LxEIp4vuOItUeqXQj9enc2iUU0qMuWQ0DiVg/s320/avileah6.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636719578217346" /></a><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1cNOAHWGzFplpAjepiff7rIjWazBVD0YAmBKslOABUeHObUJ0gcQoga1F1uJ3X9m7n9W4hYILTwa8nzX4dPzHlRvqpYNRo7r0wxQlQupVelvC2AWnuviwZco1GrpRWk4xLkFH-S97Dqo/s1600-h/avileah4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1cNOAHWGzFplpAjepiff7rIjWazBVD0YAmBKslOABUeHObUJ0gcQoga1F1uJ3X9m7n9W4hYILTwa8nzX4dPzHlRvqpYNRo7r0wxQlQupVelvC2AWnuviwZco1GrpRWk4xLkFH-S97Dqo/s320/avileah4.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636912754393330" /></a><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSTxTYy_Ys7BkttWRWvC0PRk4zoKzf0FfU9uwFGK9EtlT81VM39FargPXyPE1Gy6I5VpTB8xpsVJYLzrB5WvF9wnx33yA0VAzkaKZDdbTjO1l3qy7OIJ6_mArJiWUmzD68VqZLskJzdE/s1600-h/avileah3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSTxTYy_Ys7BkttWRWvC0PRk4zoKzf0FfU9uwFGK9EtlT81VM39FargPXyPE1Gy6I5VpTB8xpsVJYLzrB5WvF9wnx33yA0VAzkaKZDdbTjO1l3qy7OIJ6_mArJiWUmzD68VqZLskJzdE/s320/avileah3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5349636914338827266" /></a><br /><br />Happy Father's Day to the best "Abba" out there!!! We love you!!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com0tag:blogger.com,1999:blog-3244366120069212278.post-27470791558180582922009-06-16T21:06:00.004-05:002009-06-16T21:18:27.610-05:00Vacation!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJ7_QTP5CXDPUtOxsKWC0nlDcpD3e3-O6JksxcB6nH-OjDrBwD_QAaX8QYoGCZyNKCJPrt-XNRLndrsZ2fO_FFdf_AyL3ENDRaHKbmKlsAXgTP6FAEbBA5yjTnHNGe9QIR6MUCbW5VKk/s1600-h/Wisconsin+Dells+056.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJ7_QTP5CXDPUtOxsKWC0nlDcpD3e3-O6JksxcB6nH-OjDrBwD_QAaX8QYoGCZyNKCJPrt-XNRLndrsZ2fO_FFdf_AyL3ENDRaHKbmKlsAXgTP6FAEbBA5yjTnHNGe9QIR6MUCbW5VKk/s320/Wisconsin+Dells+056.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5348115120110363010" /></a><br /><br /><br />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...<br /><br /><OBJECT class=BLOG_video_class id=BLOG_video-8394e19cfb97cd73 height=266 width=320 contentId="8394e19cfb97cd73"></OBJECT>Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-8268124586926670732009-06-04T13:57:00.005-05:002009-06-04T20:23:24.590-05:00Leah--20 Months.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3FKyJyTp9eCDMKsTTGG7E1IW-n6BicgaqSAFhFQ6yj3aaoos3Qx1I53uSFEaI7xEYj23_bxM3SYp01TpzqaVPyMP2s0Es2byBZhtI4oJmGEPvmC8EoioICB6r_DL2ZVKqvkm61qrzziY/s1600-h/Zoo--2009+027.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3FKyJyTp9eCDMKsTTGG7E1IW-n6BicgaqSAFhFQ6yj3aaoos3Qx1I53uSFEaI7xEYj23_bxM3SYp01TpzqaVPyMP2s0Es2byBZhtI4oJmGEPvmC8EoioICB6r_DL2ZVKqvkm61qrzziY/s320/Zoo--2009+027.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5343548819277954370" /></a><br /><br /><strong>Age (in months, or years and months):</strong> 20 months<br /><br /><strong>Physical abilities</strong>: jumping climbing everything, perfecting kicking and throwing using both legs, marching, starting to walk up steps (holding on), running<br /><br /><strong>Speech/language: vocabulary, sentence length, etc:</strong> 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.<br /><br /><strong>Other cognitive stuff: puzzles, reasoning, etc:</strong> 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. <br /><br /><strong>Creativity:</strong> loves coloring and art. She can draw circles and loves to put stickers on paper or herself! <br /><br /><strong>Imagination:</strong> plays wonderfully with her baby dolls/stuffed animals. Talks to them, kisses them and puts them to bed. <br /><br /><strong>Social:</strong> 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. <br /><br /><strong>Character/personality:</strong> 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<br /><br /><strong>Therapy:</strong> Leah is receiving PT once a week and OT twice a week right now<br /><br /><strong>CIMT:</strong> 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! <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-78099422145526332872009-06-01T19:36:00.003-05:002009-06-01T19:50:59.191-05:00Update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgojNEOLwW2GMCNKv8NzIdXqt2bSrXRteRMJ9_1vjkjO5SQvUeTNpYv3_pj-LlzFLwYk7Ur752yERK1vvZlOygDNa0FsA9WRGa7pC3n6pwLbzEUcTyyefGsB0zmsEbxDDu8eE6ZAooLLA8/s1600-h/Zoo--2009+007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgojNEOLwW2GMCNKv8NzIdXqt2bSrXRteRMJ9_1vjkjO5SQvUeTNpYv3_pj-LlzFLwYk7Ur752yERK1vvZlOygDNa0FsA9WRGa7pC3n6pwLbzEUcTyyefGsB0zmsEbxDDu8eE6ZAooLLA8/s320/Zoo--2009+007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5342525996956817442" /></a><br /><br /><br />Sorry for the lack of blogging, we've been very busy! <br /><br />1) Leah got recasted last Thursday. This time we used regular casting material, so that we can cut it off and bi-valve it. <br /><br />2)Leah is doing amazing with the cast, I can't say enough how happy we are doing CIMT this round! <br /><br />3)We saw our Physiatrist last week--she was very impressed with all that Leah was doing and said she is right on track. <br /><br />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. <br /><br />5)The cast comes of on Thursday--we are looking forward to seeing the crossover that comes after CIMT!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-60766008766734002292009-05-24T22:21:00.002-05:002009-05-24T22:32:49.043-05:00A Quick Decision...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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com2tag:blogger.com,1999:blog-3244366120069212278.post-576154046151732732009-05-21T20:27:00.002-05:002009-05-21T20:38:42.851-05:00What A Sight!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. <br /><br />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! <br /><br />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!!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com4tag:blogger.com,1999:blog-3244366120069212278.post-53699373907354770702009-05-20T21:30:00.009-05:002009-05-20T22:32:56.907-05:00CIMT, Videos and Update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyoFmGVjjuhyNqpjVXl9sk7d66nZ636psYZ14AhdSxV_q0K9cg_Fnl3Ixnv9iL79pfaS8Chy1nldqxMy1OziSo-_Rw0c2jXaPsnmBSPtOWg8EVMd8Fo7hmDBqnNYcYN7xNsCLnHncSouk/s1600-h/Leah+CIMT+005.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyoFmGVjjuhyNqpjVXl9sk7d66nZ636psYZ14AhdSxV_q0K9cg_Fnl3Ixnv9iL79pfaS8Chy1nldqxMy1OziSo-_Rw0c2jXaPsnmBSPtOWg8EVMd8Fo7hmDBqnNYcYN7xNsCLnHncSouk/s320/Leah+CIMT+005.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5338113930186642306" /></a><br /><br /><br />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. <A href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmN4ddSyvQVxAM7Zuu5K9-xBcHr_jT_6XJ39EUM4JUdJeQWRnYhoUnPmVjGp9fo6kMg0ixZecLUwuXpkmoef_XCWVjWaDmH_7Taw4ROMPrskic8re7VTFQg9lr8Sarkh0wJToc-hhRBIs/s1600-h/Leah+CIMT+002.JPG"><IMG id=BLOGGER_PHOTO_ID_5338103975270820706 style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmN4ddSyvQVxAM7Zuu5K9-xBcHr_jT_6XJ39EUM4JUdJeQWRnYhoUnPmVjGp9fo6kMg0ixZecLUwuXpkmoef_XCWVjWaDmH_7Taw4ROMPrskic8re7VTFQg9lr8Sarkh0wJToc-hhRBIs/s320/Leah+CIMT+002.JPG" border=0></A> <br />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. <br /><br />Here are some short videos of OT, then a cute video of Leah being Leah!<br /><br /><br /><OBJECT class=BLOG_video_class id=BLOG_video-32f27d78779fc0da height=266 width=320 contentId="32f27d78779fc0da"></OBJECT><br />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!<br /><br /><OBJECT class=BLOG_video_class id=BLOG_video-7451f287133b8355 height=266 width=320 contentId="7451f287133b8355"></OBJECT><br />Leah did great closing this toy...she had some trouble opening it, but eventually did it herself! Yay! <br /><br /><OBJECT class=BLOG_video_class id=BLOG_video-396500a5b35e58aa height=266 width=320 contentId="396500a5b35e58aa"></OBJECT><br />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! <br /><br /><OBJECT class=BLOG_video_class id=BLOG_video-ed23bc50b2d1a739 height=266 width=320 contentId="ed23bc50b2d1a739"></OBJECT><br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-72640907268609674682009-05-16T23:21:00.004-05:002009-05-16T23:48:36.403-05:00CIMT--Day 3I'm so glad people still check in here, thanks for all the comments! <br /><br />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. <br /><br /><br />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. <br /><br />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!<br /><br />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!<br /><br />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.<br /><OBJECT class=BLOG_video_class id=BLOG_video-f17669a26bcb04ef height=266 width=320 contentId="f17669a26bcb04ef"></OBJECT><br /><br />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! <br /><br />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!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com6tag:blogger.com,1999:blog-3244366120069212278.post-81209339755072123492009-05-14T20:19:00.005-05:002009-05-14T20:34:02.289-05:00CIMT--Day 1<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhv3gFGYqEKSBPpXdbc9g7sKzFBjiMSC7gjtbxpzZqYgXZFmWRzz11Eq40fnYnT2aMwQ6uEfEu8b5q3Vt5aDGgFgndR-1w45oWa6lvzpKJvKR4_UewwSdpo2A3mDmqngCa0tRh7NGpsYk/s1600-h/leah2+008.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhv3gFGYqEKSBPpXdbc9g7sKzFBjiMSC7gjtbxpzZqYgXZFmWRzz11Eq40fnYnT2aMwQ6uEfEu8b5q3Vt5aDGgFgndR-1w45oWa6lvzpKJvKR4_UewwSdpo2A3mDmqngCa0tRh7NGpsYk/s320/leah2+008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5335856968638106146" /></a><br /><br />Not sure if anyone really checks this anymore, but for my own records I'm gonna write Leah's progress!<br /><br /><br />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!! <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />I'm so proud of her and how she is reacting. It's great to see! <br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD8hipg9OEmw5Ua8OYmuxVTPePPV4pDZJvUM7s9ouX_3b6wnpnhXtA4FK2MYP1_Lvd2QUU9G7GKfrhwEdGP79ulT8yKP41C2YlHpyR87M8gN2VrPsj4tr_vfT3slLpN0zPbUIDYKuWHKs/s1600-h/leah2+004.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD8hipg9OEmw5Ua8OYmuxVTPePPV4pDZJvUM7s9ouX_3b6wnpnhXtA4FK2MYP1_Lvd2QUU9G7GKfrhwEdGP79ulT8yKP41C2YlHpyR87M8gN2VrPsj4tr_vfT3slLpN0zPbUIDYKuWHKs/s320/leah2+004.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5335856969462176194" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMD65igGZKplSneTvJ0Zxy0DezQ4SZoOfDV1kO3x6HaXGVDY2NgKMAkc6QUg83Md6c5pjzMjOBCSPukXbyUCERRssdFCwQtpwK06YilpW9Nuhc03vdwh4x5oLm-mbbIDWwO1S-BP-jtK8/s1600-h/leah2+007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMD65igGZKplSneTvJ0Zxy0DezQ4SZoOfDV1kO3x6HaXGVDY2NgKMAkc6QUg83Md6c5pjzMjOBCSPukXbyUCERRssdFCwQtpwK06YilpW9Nuhc03vdwh4x5oLm-mbbIDWwO1S-BP-jtK8/s320/leah2+007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5335857552351510882" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdbJXcyWdiLH8WDGrBGiWhBlGLedmbCrgXDJyIp4e2d5VCzZT-Vq0RM6GBZrBKcl2ab8IpN8nm3c3yjmSTz34Nfjf0VrDWmUWgVvJoUQ8lObJBkL97ydacul8Al9eIofjgpewvm6IxIX0/s1600-h/leah2+006.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdbJXcyWdiLH8WDGrBGiWhBlGLedmbCrgXDJyIp4e2d5VCzZT-Vq0RM6GBZrBKcl2ab8IpN8nm3c3yjmSTz34Nfjf0VrDWmUWgVvJoUQ8lObJBkL97ydacul8Al9eIofjgpewvm6IxIX0/s320/leah2+006.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5335857550373070146" /></a>Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com7tag:blogger.com,1999:blog-3244366120069212278.post-33066952599734470492009-05-12T20:05:00.003-05:002009-05-13T16:45:16.687-05:0010 on Tuesday!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5T_nS2IKTQoae8BRfLqKrdKnyyiuxq9im33NaijGZiRslS_K2TgT8a0GCpYNwYC55QYp0E_fK8Tix-youPjdP5z_zIIzEdo3YbCZdipOC_vCcLQ3YKoSOG9EzOMXaTTigQeZDqVcLPgg/s1600-h/Leah+001.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5T_nS2IKTQoae8BRfLqKrdKnyyiuxq9im33NaijGZiRslS_K2TgT8a0GCpYNwYC55QYp0E_fK8Tix-youPjdP5z_zIIzEdo3YbCZdipOC_vCcLQ3YKoSOG9EzOMXaTTigQeZDqVcLPgg/s320/Leah+001.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5335112151166500866" /></a><br /><br /><br /><br />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. <br /><br />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. <br /><br />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! <br /><br />4) Leah does not want to sit in the stroller or cart anymore, this makes shopping VERY difficult!! <br /><br />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! <br /><br />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! <br /><br />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!<br /><br />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. <br /><br />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! <br /><br />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! <br /><br />Wish us luck with the casting!! I'll update after we get the cast! Ahhh, I'm nervous...but excited!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com1tag:blogger.com,1999:blog-3244366120069212278.post-35932720884835619692009-05-05T21:20:00.001-05:002009-05-05T21:21:50.405-05:00Major Bummer!:(Turns out Leah will not be getting casted this Thursday... :( <br /><br />There was a scheduling conflict at the clinic and her casting needs to be post-poned until next week! <br /><br />I was getting excited and nervous today and then got the call from Leah's OT! <br /><br />Bummer, I was ready for it! Oh well, now we wait until next week!!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com4tag:blogger.com,1999:blog-3244366120069212278.post-10114173263037026352009-04-30T21:17:00.002-05:002009-04-30T21:26:25.780-05:00Round 2, here we come!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT1biCz0T3p-sfB0HNZ8EmmSdNhvvhZG0N0XYQbdicCVm_u_dPH_tZ95Z2vhSd-LO7th2IqQeGTe_oUizQLkOzbb-uc9L9Zk6Hx91VzIQy4n6Hag0ei6pMetkYLnLmlT7BlaozVhwHK24/s1600-h/032.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT1biCz0T3p-sfB0HNZ8EmmSdNhvvhZG0N0XYQbdicCVm_u_dPH_tZ95Z2vhSd-LO7th2IqQeGTe_oUizQLkOzbb-uc9L9Zk6Hx91VzIQy4n6Hag0ei6pMetkYLnLmlT7BlaozVhwHK24/s320/032.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5330674105445606370" /></a><br /><br />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. <br /><br />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. <br /><br />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. <br /><br />I'm hoping it goes better then our first round and I'm certain it will!!<br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com3tag:blogger.com,1999:blog-3244366120069212278.post-70745558661431994892009-04-28T20:49:00.002-05:002009-04-28T21:06:46.035-05:00Running!!!<OBJECT class=BLOG_video_class id=BLOG_video-5fbc02607362d699 height=266 width=320 contentId="5fbc02607362d699"></OBJECT><br /><br />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!Amandahttp://www.blogger.com/profile/08560197630505666740noreply@blogger.com2