I'm sitting here watching my two boys play Bayblade in the loft with one dog in my lap and one at my feet and I am realizing what a perfect moment this is. I had a post on Facebook that reminded me to really take a step back and enjoy the little things. It's also the reason for my 'this too shall pass' tattoo, to remind me stop and smell the roses. I think it may be a downfall of a lot of moms especially those of us special needs mommas, we look so often at all the hurdles we have to overcome and not enough of these good moments. The kids are always growing and reaching for new things, I get so busy trying to keep up that I forget to look at the little things. Clay is a ball of energy, stories, and kindness all rolled into one. He's coming into his own right now so he is challenging our patience as parents at times but he is becoming such a good little man. Jude is about half done with the robotics program here at Riley Children's Hospital and he is progressing so well. Sometimes he amazes me, he only uses righty as a helper hand yet he is sitting here playing Bayblade (which is just a glorified and 'boy-ified' game of tops in case you haven't heard of the craze!) with his big brother. It really makes me thankful for what I have and all the work we put into these little members of society! Enjoy the little times!
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Tuesday, November 15, 2011
Tuesday, October 11, 2011
Adapted school tray
Today I wanted to share a struggle and a solution I had with my son. My 6 year old, right hemi son, went to kindergarten this year and w having difficulty with lunch. He wanted to buy hot lunch some of the time but didn't feel like he could do it because he has to hold, balance, and grip hard enough on the tray to get from the lunch line to his table. He felt embarrassed because he couldn't confidently do it all alone so the teacher had to do it for him or he'd risk dropping his entire lunch in the middle of the cafeteria. There solution was this:
For him to put his affected hand under the tray which opens a whole can of problems like improper habits, carryover from it, and maybe he could
So I asked the school and they allowed me to adapt the tray. And I was able to but a Velcro strap so he could feel confident carrying the tray (our rule is righty has to look just like lefty) but not fear loosing it.
Email me if I can if this would work for you too! Drhuns@yahoo.com
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For him to put his affected hand under the tray which opens a whole can of problems like improper habits, carryover from it, and maybe he could
So I asked the school and they allowed me to adapt the tray. And I was able to but a Velcro strap so he could feel confident carrying the tray (our rule is righty has to look just like lefty) but not fear loosing it.
Email me if I can if this would work for you too! Drhuns@yahoo.com
Posted using BlogPress from my iPad
Tuesday, September 13, 2011
School decision
Well, it's official, Hamilton Southeastern school system made the wrong decision today, that's for sure. Back in May they stated that because Jude was too intelligent he didn't qualify for services through the school. I disagreed with them and was able to get an independent evaluation done so that at least they could look at the things I thought were important and difficult for Jude. So we did that and waited for the school committee to come back to say that indeed Jude is "too advanced" to require services from the school system. (But truthfully those school therapists he worked with were only supervising Jude, not ever really providing therapy)
But I honestly believed they would do the right thing, despite how well Jude is doing in school, his disability lies in his physical capabilities not his mental capabilities. The thing is they are cutting out the bridge between what he mentally can do and what he can physically do. They say he is at a high reading level but who is going to hold those advanced books for him to read because he can't physically do it. An iPad they say works great for problems like this but do you think there's a chance that the school would provide this to Jude, I'd bet not. They're just so focused on making these kids cookie cutter kids so it's easier but they aren't thinking about the kids individually.
Though Jude is a pretty lucky guy, he seems to have a fantastic teacher who cares about Jude more than just a number. I feel really confident she's a great asset to Jude's team, I just wish she had the support from the school. She hasn't been able to do his assessments because he's been at therapy both times his group was evaluated. This week he was upset that he had such easy homework but that's only because his teacher hasn't had the time to assess and then challenge him. He's missing out on school success because he's gaining at therapy. Where do we fix this?
I probably shouldn't fight over this he has so many advantages that others don't and I should be grateful for that. But he has such potential. He has the ability to do great things and BECAUSE of his disability he has the drive to work hard and excel. I just want him to do what he wants to do whatever it is, no limitations. I thought that used to be a common goal but it doesn't seem like the case. At least not here in this school system.
Anyway, the subject seems to be tabled right now, at least unless we have a truancy problem because of the therapies. Not sure of my next step, I'm still a bit shocked at their decision. I'll start on that tomorrow maybe.
"This too shall pass"
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But I honestly believed they would do the right thing, despite how well Jude is doing in school, his disability lies in his physical capabilities not his mental capabilities. The thing is they are cutting out the bridge between what he mentally can do and what he can physically do. They say he is at a high reading level but who is going to hold those advanced books for him to read because he can't physically do it. An iPad they say works great for problems like this but do you think there's a chance that the school would provide this to Jude, I'd bet not. They're just so focused on making these kids cookie cutter kids so it's easier but they aren't thinking about the kids individually.
Though Jude is a pretty lucky guy, he seems to have a fantastic teacher who cares about Jude more than just a number. I feel really confident she's a great asset to Jude's team, I just wish she had the support from the school. She hasn't been able to do his assessments because he's been at therapy both times his group was evaluated. This week he was upset that he had such easy homework but that's only because his teacher hasn't had the time to assess and then challenge him. He's missing out on school success because he's gaining at therapy. Where do we fix this?
I probably shouldn't fight over this he has so many advantages that others don't and I should be grateful for that. But he has such potential. He has the ability to do great things and BECAUSE of his disability he has the drive to work hard and excel. I just want him to do what he wants to do whatever it is, no limitations. I thought that used to be a common goal but it doesn't seem like the case. At least not here in this school system.
Anyway, the subject seems to be tabled right now, at least unless we have a truancy problem because of the therapies. Not sure of my next step, I'm still a bit shocked at their decision. I'll start on that tomorrow maybe.
"This too shall pass"
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Tuesday, September 6, 2011
Future looks bright
Great news, we were called by the Riley Children's Hospital to see if Jude would participate in their robotics program! They just opened this study within the last year and we are so excited to be a part of it. I may be putting the cart before the horse because we have not done the actual evaluation but he should have no problem qualifying. It is 18 sessions of therapy on his upper affected extremity (right) twice per week. It is almost like a game simulation where he will have to move a joystick to the proper movements while playing a game. I am not all together positive about how it works, I assume it will all be explained on Thursday and I will let you all know!
We finally scheduled the case conference for Jude's IEP (individual education plan) so we are looking forward to next week. Then we will all take a look at my independent evaluations compared to what the school therapists saw. At least twice at the case conference in May his physical therapist admitted that what she wrote in the report was not actually correct. She said there was not a significant gait difference when he walked but was when ran. That's the total opposite of what is really going on, when Jude runs he looks symmetrical. He does hold his hand in a flexed position but his legs look perfect. But when he walks you there is a significant limp. That is just one of the errors in her report. I understand that they have a lot of kids they see and a short time to assess them but if it's not correct then why write that in your evaluation.
One of my biggest concerns about this year were things like opening packages and markers and glue sticks but was assured that he would be assisted if he needed it. I was told that people would watch out for him just like they would for every other kindergartener. I've found out this is not necessarily true especially in the lunchroom. His teacher seems wonderful, he doesn't say a bad thing about the classroom. But when we talk about the lunchroom he says he is sad and embarrassed. Sad because one of the two times he took hot lunch he barely made it to his table with his tray before it fell, luckily it was on the table that he dropped it and nothing spilled so he didn't feel bad. But now he is sad because he wants to carry his tray but the lunch lady said she has to do it for him. Why can't she assist him in carrying it, be there in case it slips instead of doing it for him. How will he ever get strong enough to do that on his own or will she be following him every day until high school? As of right now they won't guarantee someone will do that because he doesn't qualify for services. He also feels embarrassed because he has spilled his fruit cup twice when trying to open it. Friday he came home with a stain on the front of his shirt from his peaches and today he told us he couldn't eat his fruit cup because the lunch lady opened it a little bit and told him to do the rest and he couldn't do it in time. I've already changed the way I pack his lunch, anything that I can repackage (like lunchables) I do so in a ziploc bag and any packages I tear a start in the bag but what else am I supposed to do? So tomorrow morning I have a meeting with his principle to talk about these things and how we can make sure Jude is taken care of. If I have to be there every day for lunch I will definitely do that. But he wants to be independent, who wants your mom coming to open your lunch bags in front of all his friends, certainly not Mr Independent Jude! Hopefully tomorrow will bring good news.
We have a lot of hills in our little road but I am confident that we are at least traveling on the right road. My hope is that I can address these things with Jude so that hopefully someone with the same issues doesn't have as many bumps in their road. If I can do that I'd consider it a success.
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We finally scheduled the case conference for Jude's IEP (individual education plan) so we are looking forward to next week. Then we will all take a look at my independent evaluations compared to what the school therapists saw. At least twice at the case conference in May his physical therapist admitted that what she wrote in the report was not actually correct. She said there was not a significant gait difference when he walked but was when ran. That's the total opposite of what is really going on, when Jude runs he looks symmetrical. He does hold his hand in a flexed position but his legs look perfect. But when he walks you there is a significant limp. That is just one of the errors in her report. I understand that they have a lot of kids they see and a short time to assess them but if it's not correct then why write that in your evaluation.
One of my biggest concerns about this year were things like opening packages and markers and glue sticks but was assured that he would be assisted if he needed it. I was told that people would watch out for him just like they would for every other kindergartener. I've found out this is not necessarily true especially in the lunchroom. His teacher seems wonderful, he doesn't say a bad thing about the classroom. But when we talk about the lunchroom he says he is sad and embarrassed. Sad because one of the two times he took hot lunch he barely made it to his table with his tray before it fell, luckily it was on the table that he dropped it and nothing spilled so he didn't feel bad. But now he is sad because he wants to carry his tray but the lunch lady said she has to do it for him. Why can't she assist him in carrying it, be there in case it slips instead of doing it for him. How will he ever get strong enough to do that on his own or will she be following him every day until high school? As of right now they won't guarantee someone will do that because he doesn't qualify for services. He also feels embarrassed because he has spilled his fruit cup twice when trying to open it. Friday he came home with a stain on the front of his shirt from his peaches and today he told us he couldn't eat his fruit cup because the lunch lady opened it a little bit and told him to do the rest and he couldn't do it in time. I've already changed the way I pack his lunch, anything that I can repackage (like lunchables) I do so in a ziploc bag and any packages I tear a start in the bag but what else am I supposed to do? So tomorrow morning I have a meeting with his principle to talk about these things and how we can make sure Jude is taken care of. If I have to be there every day for lunch I will definitely do that. But he wants to be independent, who wants your mom coming to open your lunch bags in front of all his friends, certainly not Mr Independent Jude! Hopefully tomorrow will bring good news.
We have a lot of hills in our little road but I am confident that we are at least traveling on the right road. My hope is that I can address these things with Jude so that hopefully someone with the same issues doesn't have as many bumps in their road. If I can do that I'd consider it a success.
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Wednesday, August 31, 2011
Wow, what a summer.
They say time flys when you're having fun, I think time just plain flys. This summer went by in the blink of an eye. Of course it didn't help that school started mid August either! Clay and Jude are at the same school this year and they ride the bus together. This year Jude is in kindergarten all day and seems to love it. Every day his brother Clayton sits at the kitchen table for a mock spelling test. Now that Jude is in school I've had to buy another dry erase board and try to think of sight words for Jude to spell!
Summer was a blast, it was wonderful to be able to be with the boys every day. We, as a family, have decided that my time is better served at home with the boys than working outside the home. That way we insure Jude is able to go to therapies and is reminded about things like use two hands and breakfast and lunch are righty tasks, etc. And now that he is school I realize how beneficial that was. I am not there for 8 hours and I honestly don't know if he uses righty at all during those times. I have to have faith that (because of all the therapies we have done!) he will use it spontaneously and consistently, I wish I could be a fly on the wall.
Maybe I will have to delegate that job to Jude's Great Grandma, unfortunately we lost her this year after 94 wonderful years. Rose Eiting was a wonderful woman, full of happiness and love. It's a sad thing to go through and takes longer than the couple weeks it's been to forget. There is comfort in knowing she is looking out for her sweet Jude, maybe she will have to remind him now.
Jude spent a lot of time out of his AFO (a brace for his drop foot) and little by little those things help build his muscle. I asked the orthopedic doctor about that this year, there seems to be a visible difference in the size of his calves. He said because there is less neurological input it grows at a slower rate. Right now the only solution he saw was a calf implant and that's definitely not a decision I should ever make for Judian. But he also gave us some great news, another round of Botox has been deferred for 6 months. Jude's range and stretch look great so his Doctor doesn't see the need right now. I have no doubt it is because of the DynaSplint. He actually asks me to put his brace on because he knows that when he wears that consistently he doesn't need Botox.
The DynaSplint was a wonderful find from his physical therapist. After researching it she realized it may be beneficial for Jude so we tried it. So far he has avoided an entire year of Botox and is less tight than before! We are so lucky to have such a wonderful team of doctors and especially THERAPISTS. Without them we would be lost and Jude certainly wouldn't be where he is today without them. They are always looking for things that would benefit Jude. I love doing play therapy but am not near as good as those on team Jude and for that I am forever grateful.
This year brings several new challenges and changes. We are still fighting the insurance company to get payment for the Constraint Induced Therapy (CIT), we have been denied on 3 appeals now. They say that now CIT is not considered experimental like they said back in April but the 6 hours of intense therapy is not necessary. It seems that whenever we have something to prove their statements wrong they come up with some new reason. I am now looking into lawyers and external review boards, hopefully one of them will help. We are also still fighting the school system to get Jude the safety precautions that he needs. He cannot supinate his wrist (turn it over) so carrying the lunch tray is very difficult. He has already had to skip his snack at lunch because no one was there to help him open it. Although they say there are people walking around to help open things for the little ones and carry their trays, on day 1 he could not eat what I packed him for lunch because no one was there to help him open it. He is not one that asks for help easily, he really wants to try to do it himself, so many times time runs out on him because he took longer than average to do something. That is exactly my fear, that he will be pushed around and go without because he is a bit slower than his peers. The school says I shouldn't worry about that, there will always be someone to "help him out if he needs it". But they don't know if Jude doesn't ask for help or someone takes an interest in him and so far that isn't the case that I know of. So I will definitely write about it at a later time so hopefully I can help others.
Cheers
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Summer was a blast, it was wonderful to be able to be with the boys every day. We, as a family, have decided that my time is better served at home with the boys than working outside the home. That way we insure Jude is able to go to therapies and is reminded about things like use two hands and breakfast and lunch are righty tasks, etc. And now that he is school I realize how beneficial that was. I am not there for 8 hours and I honestly don't know if he uses righty at all during those times. I have to have faith that (because of all the therapies we have done!) he will use it spontaneously and consistently, I wish I could be a fly on the wall.
Maybe I will have to delegate that job to Jude's Great Grandma, unfortunately we lost her this year after 94 wonderful years. Rose Eiting was a wonderful woman, full of happiness and love. It's a sad thing to go through and takes longer than the couple weeks it's been to forget. There is comfort in knowing she is looking out for her sweet Jude, maybe she will have to remind him now.
Jude spent a lot of time out of his AFO (a brace for his drop foot) and little by little those things help build his muscle. I asked the orthopedic doctor about that this year, there seems to be a visible difference in the size of his calves. He said because there is less neurological input it grows at a slower rate. Right now the only solution he saw was a calf implant and that's definitely not a decision I should ever make for Judian. But he also gave us some great news, another round of Botox has been deferred for 6 months. Jude's range and stretch look great so his Doctor doesn't see the need right now. I have no doubt it is because of the DynaSplint. He actually asks me to put his brace on because he knows that when he wears that consistently he doesn't need Botox.
The DynaSplint was a wonderful find from his physical therapist. After researching it she realized it may be beneficial for Jude so we tried it. So far he has avoided an entire year of Botox and is less tight than before! We are so lucky to have such a wonderful team of doctors and especially THERAPISTS. Without them we would be lost and Jude certainly wouldn't be where he is today without them. They are always looking for things that would benefit Jude. I love doing play therapy but am not near as good as those on team Jude and for that I am forever grateful.
This year brings several new challenges and changes. We are still fighting the insurance company to get payment for the Constraint Induced Therapy (CIT), we have been denied on 3 appeals now. They say that now CIT is not considered experimental like they said back in April but the 6 hours of intense therapy is not necessary. It seems that whenever we have something to prove their statements wrong they come up with some new reason. I am now looking into lawyers and external review boards, hopefully one of them will help. We are also still fighting the school system to get Jude the safety precautions that he needs. He cannot supinate his wrist (turn it over) so carrying the lunch tray is very difficult. He has already had to skip his snack at lunch because no one was there to help him open it. Although they say there are people walking around to help open things for the little ones and carry their trays, on day 1 he could not eat what I packed him for lunch because no one was there to help him open it. He is not one that asks for help easily, he really wants to try to do it himself, so many times time runs out on him because he took longer than average to do something. That is exactly my fear, that he will be pushed around and go without because he is a bit slower than his peers. The school says I shouldn't worry about that, there will always be someone to "help him out if he needs it". But they don't know if Jude doesn't ask for help or someone takes an interest in him and so far that isn't the case that I know of. So I will definitely write about it at a later time so hopefully I can help others.
Cheers
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Friday, June 17, 2011
Our start of home therapy
Well we've started to do our own therapy at home and I've had so much fun getting ready and trying to make things fun for us. I really want to keep up all the progress Jude made in Alabama and that means really focusing on home therapy. I've had some crazy ideas on how to make it fun so Jude will be excited to do it. I love to do crafty things and to make things especially if that will make doing the task easier!
So during our 4 hour therapy session on Wednesday I brainstormed a ton of ideas on how to make this more fun. This was what we started out with for our therapy at home on Wednesday.
We had a lot of fun playing in a way that practiced all his newly acquired skills. Loads of board games, magnets, and Play-doh.
Something I really want to focus on was holding things like trays and board games because it is something he will be doing a lot of in school. Jude likes to have a little extra time to do things so he feels comfortable. So one idea I had was to make him his own tray that he can use for coloring stuff, his marbles, or anything he wants it for! Here's how it turned out, he really likes it and I hope he'll want to practice with it.
Some families are all about princesses and dolls but we're more of a flame and pirate family! It was fun and turned out OK I think. I'll update with any more Fun-Therapy!
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So during our 4 hour therapy session on Wednesday I brainstormed a ton of ideas on how to make this more fun. This was what we started out with for our therapy at home on Wednesday.
We had a lot of fun playing in a way that practiced all his newly acquired skills. Loads of board games, magnets, and Play-doh.
Something I really want to focus on was holding things like trays and board games because it is something he will be doing a lot of in school. Jude likes to have a little extra time to do things so he feels comfortable. So one idea I had was to make him his own tray that he can use for coloring stuff, his marbles, or anything he wants it for! Here's how it turned out, he really likes it and I hope he'll want to practice with it.
Some families are all about princesses and dolls but we're more of a flame and pirate family! It was fun and turned out OK I think. I'll update with any more Fun-Therapy!
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Location:Fishers,United States
Tuesday, June 14, 2011
Back to normal
It feels good to be home. We've been home now since Friday night and it's been nonstop since then. I went back to work and the boys went back to being spoiled by grandma. It's so nice to have my mom watch the boys while I work, I know they are well taken care of then!
We had a party on Friday night when we got home and again on Saturday, it was a great weekend for Jude. I don't know how many times I heard Jude say on Friday, this is my day. It was Jude's day. He worked so hard in Alabama. 21 days, 6 hours a day of intense therapy. No one did it for him, it was entirely Jude and you can see the results. It was the hardest thing I have ever done. I see Jude and CJ now and I think about how much they missed each other. So people would not push themselves to give things up like we did. For a month we put our family on hold. Our unit of 4 was never all together since may 16 but we come back together and you say this is what we did it for. I watched CJ run outside the second I pulled into the garage and give each other the biggest hug I have ever seen. Last night we were basically outsiders in the Clayton and Jude world. We were able to watch but to them we didn't exist. It was great. But now we're back to normal which means bickering and annoying each other. It couldn't last forever!
So it's back to the daily grind. Work this week and tomorrow Clayton and daddy leave for cub scout camp, it's overnight now! Aim glad Ryan is able to go with him, I don't think I am ready for overnight without one of us! Jude and I are really going to hit the home program hard this weekend, it will be fun!
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We had a party on Friday night when we got home and again on Saturday, it was a great weekend for Jude. I don't know how many times I heard Jude say on Friday, this is my day. It was Jude's day. He worked so hard in Alabama. 21 days, 6 hours a day of intense therapy. No one did it for him, it was entirely Jude and you can see the results. It was the hardest thing I have ever done. I see Jude and CJ now and I think about how much they missed each other. So people would not push themselves to give things up like we did. For a month we put our family on hold. Our unit of 4 was never all together since may 16 but we come back together and you say this is what we did it for. I watched CJ run outside the second I pulled into the garage and give each other the biggest hug I have ever seen. Last night we were basically outsiders in the Clayton and Jude world. We were able to watch but to them we didn't exist. It was great. But now we're back to normal which means bickering and annoying each other. It couldn't last forever!
So it's back to the daily grind. Work this week and tomorrow Clayton and daddy leave for cub scout camp, it's overnight now! Aim glad Ryan is able to go with him, I don't think I am ready for overnight without one of us! Jude and I are really going to hit the home program hard this weekend, it will be fun!
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Location:Fishers,United States
Thursday, June 9, 2011
Happy birthday Uncle Pete!
Well you know the age old saying, when you assume you make... Well I assumed, I figured therapy would be just like last time and Friday would be only be the post-test, boy was I wrong! Tomorrow will still be a full day of therapy but since I already told Jude we get to go home tomorrow Jackie is going to start early. So we can make the 8 hour treck home after our 6 hours of therapy. So my sweet baby Jude gets to go homme tomorrow and say hi to his puppies. He is so excited. This whole month he has worked towards one goal and that is to pick up Otis, our 25lb puggle. He misses those dogs so much. And although we won't be home until about 10 we won't be able to keep grandma away, she is dying to see him. I know I will lose all love when we get home because he will be superglued to Grandma so I am getting all the cuddles I can in tonight. Jude and my mom love to make jello together so I am sure she already bought out all the jello from The grocery in anticipation. I hope Grandpa is hungry!
Today Jude worked extra hard on buttoning. It is still very difficult for him to button his pants when they are on him but he works and works until he gets it. He also has a shirt that buttons all the way down the front that he is becoming a rock star at. Maybe I didn't need to get him the economy size Sweettarts from the movie today. (I am so mean that I make him pull them out of a coffee can top that we slit to mimic the button holes. He loves it though, and what better motivation than Sweettarts!) He also got to throw water balloons at Ms Jackie today at the end of the day which he loved! She was such a good sport to let him even though she had to go to the store dripping wet after work! He was breaking the balloons on her using two hands and when he wasn't using righty it still looked great with a straight wrist. After "work" we continued with the wet theme and went to the pool yet again. We have been every day this week but I have to say what else can we do when it is 99 degrees outside? We've loved having the pool right here, I wonder how long it would take to convince Daddy to get a pool in the backyard, wink wink.
So I asked Jude what his favorite thing about Alabama was and I was shocked to hear his answer. Of course it was swimming (my child!) and fishing and the zoo. But what came next shocked me, he liked buttoning the best! I didn't ask why he included that in his top things, I want to run with it for a long time, the more he likes it the easier it is for me. I know it could be a byproduct of the Sweettarts but I really think he is excited to be like his friends. I always bought elastic waistbands for him because before ACQUIREc therapy he could not manipulate buttons especially on himself. Also, everything he does is to be just like his big brother so I am not sure if this was the motivation or the new Tony Hawk camo shorts that have a zipper and button. But like I said, I am going to run with it, makes my job much easier. He has come so far. Buttoning, zipping, tying, typing and he has little muscles now! It all comes back to the strength, without it none of that would be possible.
Jude gave Ms Jackie a gift today. He made her a Build-A-Bear puppy that sings "Who Let The Dogs Out" when you push his right (of course!) hand. She is a Mississippi grad (mascot is the Bulldogs) so she loved it. Since everything revolved around Blake and Otis during our time here we thought it would be a fitting way for her to remember how far he has come with her help. She did a fantastic job working with him. He are some photos of him building Otis.
We want to give a big shout out to Uncle Pete, it's his birthday today. We miss you very much Uncle Pete and we have thought about you at every BBQ joint in Alabama! Hope your day is as great as you are! Gracie, Jackson and Julie better give him tons of kisses and hugs from us! Cheers.
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Today Jude worked extra hard on buttoning. It is still very difficult for him to button his pants when they are on him but he works and works until he gets it. He also has a shirt that buttons all the way down the front that he is becoming a rock star at. Maybe I didn't need to get him the economy size Sweettarts from the movie today. (I am so mean that I make him pull them out of a coffee can top that we slit to mimic the button holes. He loves it though, and what better motivation than Sweettarts!) He also got to throw water balloons at Ms Jackie today at the end of the day which he loved! She was such a good sport to let him even though she had to go to the store dripping wet after work! He was breaking the balloons on her using two hands and when he wasn't using righty it still looked great with a straight wrist. After "work" we continued with the wet theme and went to the pool yet again. We have been every day this week but I have to say what else can we do when it is 99 degrees outside? We've loved having the pool right here, I wonder how long it would take to convince Daddy to get a pool in the backyard, wink wink.
So I asked Jude what his favorite thing about Alabama was and I was shocked to hear his answer. Of course it was swimming (my child!) and fishing and the zoo. But what came next shocked me, he liked buttoning the best! I didn't ask why he included that in his top things, I want to run with it for a long time, the more he likes it the easier it is for me. I know it could be a byproduct of the Sweettarts but I really think he is excited to be like his friends. I always bought elastic waistbands for him because before ACQUIREc therapy he could not manipulate buttons especially on himself. Also, everything he does is to be just like his big brother so I am not sure if this was the motivation or the new Tony Hawk camo shorts that have a zipper and button. But like I said, I am going to run with it, makes my job much easier. He has come so far. Buttoning, zipping, tying, typing and he has little muscles now! It all comes back to the strength, without it none of that would be possible.
Jude gave Ms Jackie a gift today. He made her a Build-A-Bear puppy that sings "Who Let The Dogs Out" when you push his right (of course!) hand. She is a Mississippi grad (mascot is the Bulldogs) so she loved it. Since everything revolved around Blake and Otis during our time here we thought it would be a fitting way for her to remember how far he has come with her help. She did a fantastic job working with him. He are some photos of him building Otis.
We want to give a big shout out to Uncle Pete, it's his birthday today. We miss you very much Uncle Pete and we have thought about you at every BBQ joint in Alabama! Hope your day is as great as you are! Gracie, Jackson and Julie better give him tons of kisses and hugs from us! Cheers.
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Location:Birmingham,United States
Wednesday, June 8, 2011
Only one more therapy day!
We are on the countdown, only 1 more day of therapy then we have a post test on Friday and will be out of Birmingham by noon! The end is near! It's been a long road but an incredibly beneficial one.
Jude is excelling at his bilateral tasks, today he worked on typing and it was even better than yesterday. Pretty soon he will be writing this blog by himself! They worked on a lot of strengthening and made himself an exercise video that he can take home. I know Clayton will get a kick out of it, they will both love seeing Jude on his very own video. It will be fun for us all to try to do some of the things he does like crab walking and planks. I am sure you would all love to be a fly on the wall for that! Maybe I can finally start to lose this baby weight...
I have been thinking a lot lately about when Jude was born and had to stay for a week in the NICU. For that week time stood still. Clayton was four at the time and my mom flew in the minute I went into labor so I didn't worry at all about him. I stayed in the hospital for the week because all 3 times I tried to leave I cried the entire time. After carrying a child for nine months, leaving the hospital without them is the hardest thing to do. I don't wish it on my worst enemy. Unfortunately time has not stood still for this month, it feels like our vacation to Florida was a million years ago. I miss Clayton, I miss Ryan, my parents, the dogs, I miss Indiana. I hear Jude talk to Clayton and I can hear their bond over the phone, they miss each other. But Friday we will head home and this time I drive to Fishers I won't feel like half of my heart was left behind. I can't help but think I will be better for it. I can't wait to wake up in the morning (yes, I said morning!!) with those two monkeys together. To hear them trade pokemon cards, play Legos, even bicker! It will be music to my ears. All these bumps in the road look like mountains without my family but ant hills with them. I am very grateful for what I have.
This month I've watched a beautiful little girl grow and progress so much, it reminds me of how far Jude has come, just like her. I've seen Jude be 100% boy, fishing and playing on playgrounds with his little buddy. I've actually listened and felt so much pride when someone told me I am doing a good thing by Jude. I have made friends here in Alabama, ones I am sad to leave. I have cried a million tears and smiled a million smiles. I have watched my son improve and impress me every day over again. I am happy our time here is coming to an end but I am so thankful for this opportunity. When Jude was first diagnosed with a stroke we didn't know if he would walk or talk, and just look at this child now. We have a lot to be thankful for, starting with being a part of Jude's life. I don't know who I rubbed the right way to get this family I have now but I wouldn't change it for the world.
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Jude is excelling at his bilateral tasks, today he worked on typing and it was even better than yesterday. Pretty soon he will be writing this blog by himself! They worked on a lot of strengthening and made himself an exercise video that he can take home. I know Clayton will get a kick out of it, they will both love seeing Jude on his very own video. It will be fun for us all to try to do some of the things he does like crab walking and planks. I am sure you would all love to be a fly on the wall for that! Maybe I can finally start to lose this baby weight...
I have been thinking a lot lately about when Jude was born and had to stay for a week in the NICU. For that week time stood still. Clayton was four at the time and my mom flew in the minute I went into labor so I didn't worry at all about him. I stayed in the hospital for the week because all 3 times I tried to leave I cried the entire time. After carrying a child for nine months, leaving the hospital without them is the hardest thing to do. I don't wish it on my worst enemy. Unfortunately time has not stood still for this month, it feels like our vacation to Florida was a million years ago. I miss Clayton, I miss Ryan, my parents, the dogs, I miss Indiana. I hear Jude talk to Clayton and I can hear their bond over the phone, they miss each other. But Friday we will head home and this time I drive to Fishers I won't feel like half of my heart was left behind. I can't help but think I will be better for it. I can't wait to wake up in the morning (yes, I said morning!!) with those two monkeys together. To hear them trade pokemon cards, play Legos, even bicker! It will be music to my ears. All these bumps in the road look like mountains without my family but ant hills with them. I am very grateful for what I have.
This month I've watched a beautiful little girl grow and progress so much, it reminds me of how far Jude has come, just like her. I've seen Jude be 100% boy, fishing and playing on playgrounds with his little buddy. I've actually listened and felt so much pride when someone told me I am doing a good thing by Jude. I have made friends here in Alabama, ones I am sad to leave. I have cried a million tears and smiled a million smiles. I have watched my son improve and impress me every day over again. I am happy our time here is coming to an end but I am so thankful for this opportunity. When Jude was first diagnosed with a stroke we didn't know if he would walk or talk, and just look at this child now. We have a lot to be thankful for, starting with being a part of Jude's life. I don't know who I rubbed the right way to get this family I have now but I wouldn't change it for the world.
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Location:Birmingham,United States
Tuesday, June 7, 2011
day 1 with no cast
Today was the first full day with no cast and of course, Jude was a rockstar. He worked on a lot of school activities today like cutting and writing. He is a lefty and we are not trying to make him use his right hand as his dominant hand, we are trying to make him use it like a helper hand. When he concentrates the tone in his hand and arm kick in and cause him to keep righty in a fist. So when he writes his helper hand stays fisted which makes it difficult for him. Things like cutting and opening backpacks are almost impossible to do using only one hand. I am really glad he got the cast off so Jackie could work with him. She is teaching him how to do all those things the correct way so we will have all summer to practice those good habits.
It's too bad that I have zero confidence in the school Jude is supposed to be going to next year, they spent the last year observing not helping. It floored me when I went into the case conference and was told he traps a bottle or jar with his right arm and opens it with his left. I would think that an occupational therapist would teach him the correct way to hold a bottle in his helper hand but I was told that is the "educational model versus the medical model" that happens in private therapy. Don't get me wrong, I know there will come a time that Jude does this, I will not be around him 100% of the time to correct it. But I need him to learn how to do it the correct way then adapt to his body. The case committee that assessed him believes that he is functional therefore does not need services. I don't consider that functional but I certainly do have high expectations for him. BECAUSE HE CAN DO IT! People are wondering if a parochial school would serve him better because generally it has smaller class sizes and more time to help. So I looked into that today. I can't believe that me of all people is thinking of putting my kids in catholic school. Part of me thinks they are correct, maybe he would get more assistance in that setting but I am skeptical. Currently Clay is in the gifted and talented program at the public school and I have no doubt Jude will follow in his footsteps. But at that school they do not have a special program for advanced kids. That concerns me. They say all their children are taught to the G&T curriculum but when Clay was in the regular classrooms he was bored. He played when they were supposed to be learning because he understood it and didn't need the extra explaining. It caused some people to think he had ADHD which was not the case. So I think I am going to keep my options open and look into other places. I am still hoping that the school will come to their senses and carry Jude on the program, I already have the appeal started. He had his occupational therapy evaluation before we came to Alabama and will have his physical therapy evaluation when we get home. At the very least he will be eligible for a 504 plan. I appreciate all the help people have given me with this, I promise it will go to good use! I haven't thought about it just yet because our trip here to Birmingham has taken up all my mental capacity! I am sure I will be bugging you all so much your sick of me soon enough, have no fear! But for now I am going to go snuggle with my little man without the fear of being clubbed in the middle of the night with a cast. I only have to stay away from his legs, he is still wearing his metal splint and it hurts! Good night all.
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It's too bad that I have zero confidence in the school Jude is supposed to be going to next year, they spent the last year observing not helping. It floored me when I went into the case conference and was told he traps a bottle or jar with his right arm and opens it with his left. I would think that an occupational therapist would teach him the correct way to hold a bottle in his helper hand but I was told that is the "educational model versus the medical model" that happens in private therapy. Don't get me wrong, I know there will come a time that Jude does this, I will not be around him 100% of the time to correct it. But I need him to learn how to do it the correct way then adapt to his body. The case committee that assessed him believes that he is functional therefore does not need services. I don't consider that functional but I certainly do have high expectations for him. BECAUSE HE CAN DO IT! People are wondering if a parochial school would serve him better because generally it has smaller class sizes and more time to help. So I looked into that today. I can't believe that me of all people is thinking of putting my kids in catholic school. Part of me thinks they are correct, maybe he would get more assistance in that setting but I am skeptical. Currently Clay is in the gifted and talented program at the public school and I have no doubt Jude will follow in his footsteps. But at that school they do not have a special program for advanced kids. That concerns me. They say all their children are taught to the G&T curriculum but when Clay was in the regular classrooms he was bored. He played when they were supposed to be learning because he understood it and didn't need the extra explaining. It caused some people to think he had ADHD which was not the case. So I think I am going to keep my options open and look into other places. I am still hoping that the school will come to their senses and carry Jude on the program, I already have the appeal started. He had his occupational therapy evaluation before we came to Alabama and will have his physical therapy evaluation when we get home. At the very least he will be eligible for a 504 plan. I appreciate all the help people have given me with this, I promise it will go to good use! I haven't thought about it just yet because our trip here to Birmingham has taken up all my mental capacity! I am sure I will be bugging you all so much your sick of me soon enough, have no fear! But for now I am going to go snuggle with my little man without the fear of being clubbed in the middle of the night with a cast. I only have to stay away from his legs, he is still wearing his metal splint and it hurts! Good night all.
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Location:Birmingham,United States
Monday, June 6, 2011
NO CAST NO CAST LA LALA LALA LA
Jude got his cast off today, YEAH! He says it feels weird but he had no problem using it again! And best part was that he didn't have any sores like the serial casting he still has a scar from on his foot, thank you to his therapists! But boy oh boy was his arm stinky! So we spent the entire afternoon in the pool to wash it off. Even after that and a 45 minute soak it still smells a bit! But it's good to have it back. After all that I am pretty beat so I'm going to make this short. Jude is doing amazing, buttoning his own shorts and even starting to type on the computer. I am so excited to have these next couple of days to work on bilateral tasks. Here's some photos of my rockstar.
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Location:Birmingham,United States
Sunday, June 5, 2011
Back in the Birm
Well, I finally made it back to Birmingham. It was a nice break and I keep thinking to myself, this is the last Sunday I will spend in this apartment. Next Sunday maybe I will even get to resume my mom's night off if I am lucky. Although I am sure that next week this time I will be enjoying my wine at home and that's good enough for me.
Today was a pretty uneventful day, we drove back from Nashville so a lot of time was spent in the truck. On the way home we stopped at the McWane science center and played for a couple hours. I really like it there, everything is interactive and I love just watching Jude play with everything. His wrist is so straight! They just opened a new exhibit that has giant foam tinker toys so Jude spent a lot of time in there today. The smaller balls like tennis balls used to be very difficult for him to hold because they require the whole hand to extend and grasp. But now he can walk around holding a ball that size no problem and it's all because of how much stronger he is now. Before he couldn't get his hand around it to grip because it was so hard for him to open his hand all the way. Now he's a rockstar!
Tomorrow is the big day, the cast is (hopefully!) coming off for more than just an hour. As long as Jude works hard with therapy tomorrow, Jackie is going to take off the cast before she leaves. Then he will get all week to focus on building good habits for too handed tasks. So hopefully we won't have to say "fix your wrist" or "use both hands" quite so much when we come home. I swear it feels like I say that 50 times a day! In people with strokes there is so much compensation that sometimes the brain almost forgets the affected extremity is really there. It's a catch 22, you want them to be independent but they need to be reminded to use all extremities. These poor little babes, so much to remember! I will let you all know about cast removal tomorrow but I assume it will be uneventful until the pool afterwards! Good night!
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Today was a pretty uneventful day, we drove back from Nashville so a lot of time was spent in the truck. On the way home we stopped at the McWane science center and played for a couple hours. I really like it there, everything is interactive and I love just watching Jude play with everything. His wrist is so straight! They just opened a new exhibit that has giant foam tinker toys so Jude spent a lot of time in there today. The smaller balls like tennis balls used to be very difficult for him to hold because they require the whole hand to extend and grasp. But now he can walk around holding a ball that size no problem and it's all because of how much stronger he is now. Before he couldn't get his hand around it to grip because it was so hard for him to open his hand all the way. Now he's a rockstar!
Tomorrow is the big day, the cast is (hopefully!) coming off for more than just an hour. As long as Jude works hard with therapy tomorrow, Jackie is going to take off the cast before she leaves. Then he will get all week to focus on building good habits for too handed tasks. So hopefully we won't have to say "fix your wrist" or "use both hands" quite so much when we come home. I swear it feels like I say that 50 times a day! In people with strokes there is so much compensation that sometimes the brain almost forgets the affected extremity is really there. It's a catch 22, you want them to be independent but they need to be reminded to use all extremities. These poor little babes, so much to remember! I will let you all know about cast removal tomorrow but I assume it will be uneventful until the pool afterwards! Good night!
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Saturday, June 4, 2011
Nashville
Today was a day! I finally got to see Jude after the. Longest. And. Most. Fun. Week. Of. My. Life. I had so much fun with Clayton, he is such a great young man. We had a ton of fun playing with friends and relaxing being a half normal family. Clay really misses Jude, I found that out which I was home. When you're away from it, it's easy to think he's doing fine but when I am able to really talk to him I realize how much he misses Jude. He was able to bring a friend over on Friday for our (now annual) end of school party and decided against the sibling exchange program which would switch his friend for his brother. Instead he decided to keep Jude AND Carter, my poor refrigerator! With how much they fight I never thought I'd hear that coming from Clay!
After a week with Clayton I had to say goodbye again, I am getting so sick of I will see you soon excuses. He is being so strong not having his mom there, s often we forget about how much he has to deal with and only focus on the special needs. It's forever a struggle, give too much to your special needs kid and the other kids suffer but don't give enough and everyone suffers. I feel for all special needs parents.
Today Ryan and I met in Nashville, TN to switch Jude and although I would have loved coming here with my cousins, we had a great time. Clay was with Grandpa today and got to go to the end of the year camp out for Cub Scouts. Considering I have not had a response from my texts I think they're having fun! My mom drove up to Green Bay today to go see my grandma. 94 years young and still going strong, she is an amazing woman! She unfortunately just had a stroke thi year and it has brought her so much closer to Jude. It was one of those unfortunate events that make you stronger for going through, Jude thinks of Gram as his little ally. It crazy ti believe (shameless plug) KIDS HAVE STROKES too!
So the country music capital of the world was not lost on me, I had a couple of moments where music overtook me today. While we visited the Grand Ole Opry Darius Rucker was playing Don't Think I Don't which is near and dear to my heart then Van Halen reminded me of the good ole times of middle school. Nashville is a pretty cool city. We spent most of the evening with the folks at Hard Rock Cafe which was awesome! Johnathin and Dana at the Hard Rock Cafe Nashville are the best. They took a shining to Jude and he got 2 pins and guitar strap to start a collection. He was in high heaven!
On a functional standpoint, Jude gained so much stretch while I was gone. He worked really hard! He had a four pawed therapy visitor named Dylan that he loved. He misses the dogs so much it must have been a great break from therapy. But no rest for the weary, Ryan has a photo of Jude throwing the toy to Dylan overhead and with a straight wrist, amazing! When I put Jude to sleep I laid with his hand on my cheek and I loved how open and not tense his hand was. I laid there for an extra ten minutes easy because of that! We promised to go back to the apartment and have a reading night for at least an hour tomorrow.
In one week from today we will be done with therapy and back home to Indy. I will be so glad. The results that Acquire therapy are AMAZING. But it's a struggle for all of us. Being half the US away is tough on any family. Insurance so far has declined to pay the fee but we are still fighting that decision. We are so lucky to have our family, they have made up the difference that we couldn't. This therapy is so important now because his brain is still willing to accept the retraining. It is amazing what the brain can do. We will keep fighting for the insurance, the school services, and anything else we think Jude will benefit from because that's our job as parents. In a perfect world our children will get what the need no matter the cost, until then I will be Jude's voice like all parents do. For our children we will do anything.
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After a week with Clayton I had to say goodbye again, I am getting so sick of I will see you soon excuses. He is being so strong not having his mom there, s often we forget about how much he has to deal with and only focus on the special needs. It's forever a struggle, give too much to your special needs kid and the other kids suffer but don't give enough and everyone suffers. I feel for all special needs parents.
Today Ryan and I met in Nashville, TN to switch Jude and although I would have loved coming here with my cousins, we had a great time. Clay was with Grandpa today and got to go to the end of the year camp out for Cub Scouts. Considering I have not had a response from my texts I think they're having fun! My mom drove up to Green Bay today to go see my grandma. 94 years young and still going strong, she is an amazing woman! She unfortunately just had a stroke thi year and it has brought her so much closer to Jude. It was one of those unfortunate events that make you stronger for going through, Jude thinks of Gram as his little ally. It crazy ti believe (shameless plug) KIDS HAVE STROKES too!
So the country music capital of the world was not lost on me, I had a couple of moments where music overtook me today. While we visited the Grand Ole Opry Darius Rucker was playing Don't Think I Don't which is near and dear to my heart then Van Halen reminded me of the good ole times of middle school. Nashville is a pretty cool city. We spent most of the evening with the folks at Hard Rock Cafe which was awesome! Johnathin and Dana at the Hard Rock Cafe Nashville are the best. They took a shining to Jude and he got 2 pins and guitar strap to start a collection. He was in high heaven!
On a functional standpoint, Jude gained so much stretch while I was gone. He worked really hard! He had a four pawed therapy visitor named Dylan that he loved. He misses the dogs so much it must have been a great break from therapy. But no rest for the weary, Ryan has a photo of Jude throwing the toy to Dylan overhead and with a straight wrist, amazing! When I put Jude to sleep I laid with his hand on my cheek and I loved how open and not tense his hand was. I laid there for an extra ten minutes easy because of that! We promised to go back to the apartment and have a reading night for at least an hour tomorrow.
In one week from today we will be done with therapy and back home to Indy. I will be so glad. The results that Acquire therapy are AMAZING. But it's a struggle for all of us. Being half the US away is tough on any family. Insurance so far has declined to pay the fee but we are still fighting that decision. We are so lucky to have our family, they have made up the difference that we couldn't. This therapy is so important now because his brain is still willing to accept the retraining. It is amazing what the brain can do. We will keep fighting for the insurance, the school services, and anything else we think Jude will benefit from because that's our job as parents. In a perfect world our children will get what the need no matter the cost, until then I will be Jude's voice like all parents do. For our children we will do anything.
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Location:Church St,Nashville,United States
Friday, June 3, 2011
Operation Last Day of School
It was Clayton's last day of the 3rd grade today. I can't believe he will be in 4th grade next year. And Jude will be in kindergarten. Oh, it's all starting too soon! Our school system is going to offer a limited number of all day kindergarten rather than just the half day option available now. They will have two classrooms and are using a lottery system to choose 50 children to go full day. I signed Jude up only because I know he would do great at it and it would give him the extra practice he needs. Athough I won't be too upset if he is not chosen as one of the full day kids because then I would get more time with him! It will be very difficult for him to do two handed tasks like carrying a lunch tray and playing on the playground. If he can get a little more practice in before all his peers it would benefit him so much. I don't know if his motor planning is delayed because of the stroke or if it is in his personality but he is very calculated. He wants to know what he is doing before he does it and he likes to think things through.
I reminded Jude that next year it will be he and Clay getting destroyed after school on the last day. I don't think he liked that idea too much. It's OK, he has about a year to warm up to it. We had a blast after school today. I made enough balloons to keep all 5 of us in water balloon ammunition for about 15 minutes which felt like an eternity!
I did the old distraction trick. I made the new water slide the first thing they saw.
While they were busy looking at that we drenched them with super soakers when they got off the bus. We had 5 huge buckets filled with water balloons and water guns for everyone complete with a fill up station. I came in soaked, apparently they thought getting the adults would be more fun!
It was great fun. These are the after shots
To finish it all up we had sno-cones on the front porch. My little man is no longer a third grader, it's crazy!
Tomorrow I head back on my trip to Birmingham. Ryan and I are planning to stay downtown Nashville tomorrow night then Jude and I head back to the apartment on Sunday. I am looking forward to seeing him. I have enjoyed my time home with Clayton so much. I can't wait for next week to be done and us on our way back home with a stronger little boy. Happy summer!
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I reminded Jude that next year it will be he and Clay getting destroyed after school on the last day. I don't think he liked that idea too much. It's OK, he has about a year to warm up to it. We had a blast after school today. I made enough balloons to keep all 5 of us in water balloon ammunition for about 15 minutes which felt like an eternity!
I did the old distraction trick. I made the new water slide the first thing they saw.
While they were busy looking at that we drenched them with super soakers when they got off the bus. We had 5 huge buckets filled with water balloons and water guns for everyone complete with a fill up station. I came in soaked, apparently they thought getting the adults would be more fun!
It was great fun. These are the after shots
To finish it all up we had sno-cones on the front porch. My little man is no longer a third grader, it's crazy!
Tomorrow I head back on my trip to Birmingham. Ryan and I are planning to stay downtown Nashville tomorrow night then Jude and I head back to the apartment on Sunday. I am looking forward to seeing him. I have enjoyed my time home with Clayton so much. I can't wait for next week to be done and us on our way back home with a stronger little boy. Happy summer!
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Location:Fishers,United States
Thursday, June 2, 2011
Preparing for the last day of school
Tomorrow is the last day of school for Jude's big brother Clayton. His last day as a 3rd grader. On Clayton's last day of 2nd grade I waited until he was getting off the bus then soaked him with over 150 water balloons. So this year naturally I had to out do that. I have a 10 gallon bucket almost full of water balloons but tomorrow I will add to that number. Unfortunately I used the old water balloons from last year and broke about half of them. Lesson learned, balloons should have expiration dates or you will get as wet as your sink.
I went on a mission today to Toys-R-Us to find the best super soaker. I came home with a water slide and a super soaker that shoots 40 feet! I also told Clayton he could bring a friend home with him so I get to soak 2 birds with one water balloon. Photos of the destruction will come soon!
I was going through some photos of Jude and I am starting to get excited about going back to Alabama. It will be hard to leave Clayton again, that's why I'm trying to make tomorrow as fun as possible. On Saturday I leave for Nashville but it starts our last week of therapy. One week closer to starting our summer. I see the pool, water slide, driveway drinks, catching fireflys, and picnics in our future! Here's some photos from last week at Jude's new favorite BBQ joint because their ribs "taste just like Grandpa's" and the Galleria mall.
Jude got some good news today. If he works hard tomorrow and Monday then he will get his cast off early. He is doing so great Jackie thinks he would really benefit from some practice with bilateral tasks. This means we will get to make use of our two pools and southern weather. I am really looking forward to having a lot of time to see how Jackie teaches him to do things. Because of the stroke Jude has to relearn how to do everything with his right hand. He has learned to compensate so much that if you looked at him without knowing he had CP you would never guess it. Jackie does a great job at breaking down each task to simple instructions so that Jude learns what the movement is supposed to be. Even taking a plate into the kitchen requires him to think each part through. Without any help he is able to pull the plate to the edge of the table, grip the plate, lift it up and walk with it over 10 feet. That's tough for any child to do but imagine it using only the non dominant hand. When we break down every move, we realize what goes into each movement. Jude has to retrain all those pathways that were damaged due to his stroke and then strengthen every movement to do it. And he does a great job at it! That's another benefit of the Acquire program at UAB, he has the time to retrain and strengthen those pathways. It's hard but worth it.
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I went on a mission today to Toys-R-Us to find the best super soaker. I came home with a water slide and a super soaker that shoots 40 feet! I also told Clayton he could bring a friend home with him so I get to soak 2 birds with one water balloon. Photos of the destruction will come soon!
I was going through some photos of Jude and I am starting to get excited about going back to Alabama. It will be hard to leave Clayton again, that's why I'm trying to make tomorrow as fun as possible. On Saturday I leave for Nashville but it starts our last week of therapy. One week closer to starting our summer. I see the pool, water slide, driveway drinks, catching fireflys, and picnics in our future! Here's some photos from last week at Jude's new favorite BBQ joint because their ribs "taste just like Grandpa's" and the Galleria mall.
Jude got some good news today. If he works hard tomorrow and Monday then he will get his cast off early. He is doing so great Jackie thinks he would really benefit from some practice with bilateral tasks. This means we will get to make use of our two pools and southern weather. I am really looking forward to having a lot of time to see how Jackie teaches him to do things. Because of the stroke Jude has to relearn how to do everything with his right hand. He has learned to compensate so much that if you looked at him without knowing he had CP you would never guess it. Jackie does a great job at breaking down each task to simple instructions so that Jude learns what the movement is supposed to be. Even taking a plate into the kitchen requires him to think each part through. Without any help he is able to pull the plate to the edge of the table, grip the plate, lift it up and walk with it over 10 feet. That's tough for any child to do but imagine it using only the non dominant hand. When we break down every move, we realize what goes into each movement. Jude has to retrain all those pathways that were damaged due to his stroke and then strengthen every movement to do it. And he does a great job at it! That's another benefit of the Acquire program at UAB, he has the time to retrain and strengthen those pathways. It's hard but worth it.
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Location:Fishers,United States
Wednesday, June 1, 2011
Why
Today was Ryan's first day in Alabama. Jude got his cast changed today and did a lot of 2 handed tasks. He did some weight bearing, buttoned his pants, and tied his own shoes again. Ryan really enjoyed being there with Jude.
Clay and I went to the movies tonight. I got to see Kung Fu Panda 2 again, it's a good movie! It's really good to spend time with just him. He is such a sweet young man. It's hard to believe he will be 10 this year, he's getting so old. I love the man he is becoming.
Today I wanted to tell everyone why I did this blog. I wanted to let everyone know what was going on with Jude while we were in Alabama. He has aunts and uncles and cousins and friends all over the world. We are very blessed. Buti also wanted to let everyone know how strong Jude is. Sometimes being a parent if a special needs kiddo is difficult. I often feel guilty about feeling this way because as much as I have to deal with, Jude has 10 times more. Sometimes I feel guilty because I don't have it as bad as others. But Jude is his own person, he has his strengths and his weaknesses and none are better or worse than another. The best I think I can do is support. I can't change what happened to Jude but I can make his life a little easier. Hopefully by telling this blog I will help others that are in a situation like this. Hopefully it helps someone.
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Clay and I went to the movies tonight. I got to see Kung Fu Panda 2 again, it's a good movie! It's really good to spend time with just him. He is such a sweet young man. It's hard to believe he will be 10 this year, he's getting so old. I love the man he is becoming.
Today I wanted to tell everyone why I did this blog. I wanted to let everyone know what was going on with Jude while we were in Alabama. He has aunts and uncles and cousins and friends all over the world. We are very blessed. Buti also wanted to let everyone know how strong Jude is. Sometimes being a parent if a special needs kiddo is difficult. I often feel guilty about feeling this way because as much as I have to deal with, Jude has 10 times more. Sometimes I feel guilty because I don't have it as bad as others. But Jude is his own person, he has his strengths and his weaknesses and none are better or worse than another. The best I think I can do is support. I can't change what happened to Jude but I can make his life a little easier. Hopefully by telling this blog I will help others that are in a situation like this. Hopefully it helps someone.
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Location:Fishers,United States
Tuesday, May 31, 2011
Fun day with Clay
Today Clayton had to go back to school so I had my first day alone. Ryan went to work in Kentucky today but is on his way to Alabama right now. Tomorrow ends Grandpa's reign on camp Jude. I think both Jude and Grandpa had fun this week but I think it was a little difficult for my dad to see how hard Jude works. Ryan is going to work while he is out with Jude, we are lucky that he works for a great company. On Saturday Ryan, Jude, and I are going to meet up in Nashville, TN for the weekend. If anyone reading this blog has any ideas on where to go in Nashville, leave me a comment!
I pampered myself today, after Clayton went to school I laid in bed and pet the dogs for a while. I miss them so much when I am gone, it's hard to believe they are just dogs. I no longer have 2 automatic vacuums picking up everything Jude drops. Jude is the same as me, he misses them a ton. He uses Blake and Otis as motivation and his goal when coming home from Alabama is to be able to pick up all 25 lbs of Otis. I'm so glad my kids are animal lovers like me.
So tonight got to be a Clayton and mom night and I couldn't have asked for more. Sometimes I think Clay feels lost in the shuffle because we are always doing different therapies for Jude and stuff. He knows he is loved very much but sometimes it's easy to feel like you don't get enough time. We made son-cones then slushies with our new electric son-cone maker. This year we upgraded because moms hand was getting sore from cranking the manual one so often last year. Then we played Sorry and he beat my pants off. Now we are upstairs reading before bed. He said that he is really glad I'm his mom because I have shared my love for reading with them. He's so sweet.
Tomorrow I will be planting flowers all day, it's the little things in life! I think I am procrastinating on the things that I have to do a little bit. Before we left for Acquire therapy the school system told us Jude didn't qualify for their special needs program next year in kindergarten. So I need to start my research on the appeal. Better get an early start, good night all!
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I pampered myself today, after Clayton went to school I laid in bed and pet the dogs for a while. I miss them so much when I am gone, it's hard to believe they are just dogs. I no longer have 2 automatic vacuums picking up everything Jude drops. Jude is the same as me, he misses them a ton. He uses Blake and Otis as motivation and his goal when coming home from Alabama is to be able to pick up all 25 lbs of Otis. I'm so glad my kids are animal lovers like me.
So tonight got to be a Clayton and mom night and I couldn't have asked for more. Sometimes I think Clay feels lost in the shuffle because we are always doing different therapies for Jude and stuff. He knows he is loved very much but sometimes it's easy to feel like you don't get enough time. We made son-cones then slushies with our new electric son-cone maker. This year we upgraded because moms hand was getting sore from cranking the manual one so often last year. Then we played Sorry and he beat my pants off. Now we are upstairs reading before bed. He said that he is really glad I'm his mom because I have shared my love for reading with them. He's so sweet.
Tomorrow I will be planting flowers all day, it's the little things in life! I think I am procrastinating on the things that I have to do a little bit. Before we left for Acquire therapy the school system told us Jude didn't qualify for their special needs program next year in kindergarten. So I need to start my research on the appeal. Better get an early start, good night all!
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Monday, May 30, 2011
Back in Indy
I am back in Indy for the week and it is a great thing to be back with Ryan, Clayton and the dogs. Jude spent the day with Grandpa fishing and then having a BBQ with some friends of my dad. Clay caved pretty quickly after I got there, he said the words he'd never admit to, he missed me! He has been spending a lot of time with some of his really good friends, thank you to the Heitkamp's and Griffin's for all the play times! It was great just listening to him, a good thing since he talked the whole night. It's good to be home with my four guys.
In the same breath, Saturday was one of the hardest days I've had in my life. For two weeks Jude and I have been together most of every day. My heart feels like it's in two different places, Alabama with Jude and here with CJ and Ryan. Everything we do feels like it's missing a piece. We had an amazing dinner the other night but it just didn't feel right without Jude. He has called me at nights and says he misses me and wishes I could come back to Alabama. But Clay needs me here but Jude there and I'm not sure what is fair. Both of the boys are so brave and trying to make the best of the situation. I wish I could be two places.
Sunday was better than Saturday and today was even better. Jude went back to work today, there are no vacations in therapy! My dad really wanted to be there to learn more ways he could help Jude with therapy so I am sure they had a productive day. Grandpa will also be the tomorrow but then daddy gets to go to Alabama. Ryan is leaving tomorrow to work in Kentucky and will drive right from there to Birmingham. Then Ryan and Jude will drive 3 hours north on Saturday to meet me in Nashville for the weekend. I will be in Birmingham for the last week of therapy. Busy rest of the month for us.
Hope everyone had a great Memorial day weekend. Thank you to all our military and their families. Hug your kiddos extra tight tonight for the families that can't be together.
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In the same breath, Saturday was one of the hardest days I've had in my life. For two weeks Jude and I have been together most of every day. My heart feels like it's in two different places, Alabama with Jude and here with CJ and Ryan. Everything we do feels like it's missing a piece. We had an amazing dinner the other night but it just didn't feel right without Jude. He has called me at nights and says he misses me and wishes I could come back to Alabama. But Clay needs me here but Jude there and I'm not sure what is fair. Both of the boys are so brave and trying to make the best of the situation. I wish I could be two places.
Sunday was better than Saturday and today was even better. Jude went back to work today, there are no vacations in therapy! My dad really wanted to be there to learn more ways he could help Jude with therapy so I am sure they had a productive day. Grandpa will also be the tomorrow but then daddy gets to go to Alabama. Ryan is leaving tomorrow to work in Kentucky and will drive right from there to Birmingham. Then Ryan and Jude will drive 3 hours north on Saturday to meet me in Nashville for the weekend. I will be in Birmingham for the last week of therapy. Busy rest of the month for us.
Hope everyone had a great Memorial day weekend. Thank you to all our military and their families. Hug your kiddos extra tight tonight for the families that can't be together.
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Friday, May 27, 2011
Christmas in May
Tonight it was like Christmas in May only it was Grandpa coming instead of Santa. Jude told everyone he saw today that his Grandpa was coming from Ms Jackie to our waitress. Then when he did finally get here Jude was so excited he talked nonstop for over 30 minutes! He had to show Grandpa how he can tie his shoe, his new monster truck, how he can hold the bucket filled with beans, and everything in between. I had to laugh to myself because before she left today, Ms Jackie went over his "homework" to do over the weekend. That was one of the first things Jude showed him and how well he can weight bear. I have a feeling they will have fun this week.
Before I became chopped liver because Grandpa came here, Jude and had a wonderful day! For the last hour of therapy we went to the paint your own pottery place and painted so many things. Jude was especially proud of the plate he made for righty and I was amazed at how open and straight his handprints were. Then we went to the McDonald's play area for quite some time.
We finished it off with a trip to the Galleria mall to ride the carousel and build a bear. It was quite a fun day.
So I am headed home tomorrow. It will be great to see CJ, it's his last week of school so we are bound to have some fun. It will be nice to be home, sleep in my own bed and not be in an apartment! But I sure am going to miss Jude. It will be hard but I know Grandpa, Daddy, and Jude will be having the time of their lives and I will be back for the final week of therapy. I hope everyone has a wonderful Memorial day weekend, I feel bad for clayton who unfortunately will not even have school on Monday to escape my kisses and hugs!
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Before I became chopped liver because Grandpa came here, Jude and had a wonderful day! For the last hour of therapy we went to the paint your own pottery place and painted so many things. Jude was especially proud of the plate he made for righty and I was amazed at how open and straight his handprints were. Then we went to the McDonald's play area for quite some time.
We finished it off with a trip to the Galleria mall to ride the carousel and build a bear. It was quite a fun day.
So I am headed home tomorrow. It will be great to see CJ, it's his last week of school so we are bound to have some fun. It will be nice to be home, sleep in my own bed and not be in an apartment! But I sure am going to miss Jude. It will be hard but I know Grandpa, Daddy, and Jude will be having the time of their lives and I will be back for the final week of therapy. I hope everyone has a wonderful Memorial day weekend, I feel bad for clayton who unfortunately will not even have school on Monday to escape my kisses and hugs!
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Location:Birmingham,United States
Thursday, May 26, 2011
The best day
As for today, it is going down in history as one of the best days ever. Jude did great in therapy today, he started to play the keys on the piano today. It is really difficult for him to isolate his fingers to push one key. There are a lot of pieces to playing the keyboard that have to all work together at the same time. He has to hold his wrist up and open his fingers then push down with just one key with the correct finger. Thumby is really good at it and tall man does pretty well but he tends to curl his fingers when he is concentrating on something else. But he was doing well with it for the first day of trying so there is lots of work to be done. It will definitely be added to our home program when we are done in 2 WEEKS! I can't believe it has gone by so fast. Of course it feels like forever since we've been home it feels like we just started yesterday.
Today was a wonderful day for me, I met another mom who's child had a stroke just like Jude. She too is affected on her right side. I was able to go out to lunch with her without the kids and we didn't stop talking the entire 2 hours. Then her and her daughter came over for dinner tonight so the kids got to meet each other too. Jude was so excited to have someone near his size and that had a stroke and a cast on too. I am sure he is going to tell everyone about his new friend. I have a great support group that I am lucky to be a part of back in Indy, I love my CP Mom's group mommas! They are the best and it is such a wonderful thing to get away with ladies who know what types of struggles we face on a daily basis. It's hard to understand unless you have a special needs kid. But I have never met someone who had a child with CP due to a stroke. It was amazing how similar their stories of birth and diagnosis are. So it was a wonderful thing to be able to talk with a really cool woman and have the kids play with someone like them. In between all those playdates for mom and kid, Jude and I were able to go see Kung Fu Panda 2 which came out today. It was a great movie and Jude is at such a fun age for it. During the scary parts I could feel him jump and his heart race and the during the happy parts he was laughing right alone with the characters, it was fun.
So now I am sitting in the apartment with Jude snoring away thinking how lucky I am. I am lucky to have a wonderful set of boys who make me laugh daily, a great group of CP moms that I can connect with, an incredibly supportive family, and now new friends. Life has some bumpy roads I will be the first to admit that but I will be sure to enjoy the sights and experiences along the way! I hope you all do as well.
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Today was a wonderful day for me, I met another mom who's child had a stroke just like Jude. She too is affected on her right side. I was able to go out to lunch with her without the kids and we didn't stop talking the entire 2 hours. Then her and her daughter came over for dinner tonight so the kids got to meet each other too. Jude was so excited to have someone near his size and that had a stroke and a cast on too. I am sure he is going to tell everyone about his new friend. I have a great support group that I am lucky to be a part of back in Indy, I love my CP Mom's group mommas! They are the best and it is such a wonderful thing to get away with ladies who know what types of struggles we face on a daily basis. It's hard to understand unless you have a special needs kid. But I have never met someone who had a child with CP due to a stroke. It was amazing how similar their stories of birth and diagnosis are. So it was a wonderful thing to be able to talk with a really cool woman and have the kids play with someone like them. In between all those playdates for mom and kid, Jude and I were able to go see Kung Fu Panda 2 which came out today. It was a great movie and Jude is at such a fun age for it. During the scary parts I could feel him jump and his heart race and the during the happy parts he was laughing right alone with the characters, it was fun.
So now I am sitting in the apartment with Jude snoring away thinking how lucky I am. I am lucky to have a wonderful set of boys who make me laugh daily, a great group of CP moms that I can connect with, an incredibly supportive family, and now new friends. Life has some bumpy roads I will be the first to admit that but I will be sure to enjoy the sights and experiences along the way! I hope you all do as well.
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Location:Birmingham,United States
Wednesday, May 25, 2011
Almost to the downhill part
Today was another great day! Jude worked really hard and could almost turn his hand all the way over to give Ms Jackie five. He has lost the frustration, now he just deals with the cast and the fact that things take a lot longer to do. It's still difficult for him to go to the bathroom alone which I know frustrates him but he deals with it. He has such a great personality that he just pushes on and doesn't get upset when something is difficult for him.
Today Ryan sent Jude's DynaSplint and of course I had to shake my finger at him for just sending the splint, no note or anything, the nerve of him. But as he says you get what you get and you don't throw a fit! So Jude is back to being RoboJude at night. I'm thinking that I should have gotten a 2 bedroom apartment because with his brace on his right foot and a cast on his left arm I may get a little bruised sleeping with him tonight. His DynaSplint is the most wonderful thing in the world and gets the best results. It is a metal boot that gives him a passive stretch when he is sleeping so he doesn't notice it as much. When he wakes up he can push his foot out but when he relaxes it slowly stretches again. I wish he could have one for his hamstring now, it's so tight and I think that is what causes him to limp a little bit. By using the DynaSplint we have been able to avoid bottom injections for 18 whole months. That makes me so happy, the injections and serial casting is hard on him.
I am so excited for tomorrow, I am going to lunch with another mom who is here with her daughter also. I am really looking forward to it because I will get some much needed adult interaction and I have never actually known anyone who's child had a stroke as well. And Jude has already started a countdown for Friday when Grandpa comes. Grandpa told him he would get here about 10:00 and if Jude wasn't up he was going to jump on him. But Jude already has a plan to put his righty out to clothesline Grandpa if he jumps on him. I think they're both a bit excited. Poor Jude has been with only me for 2 weeks, don't know how anyone survives me for that long!
I know it's pushing it but it's almost the weekend then after the weekend we will be over the halfway bump and then it's all downhill from there. The ever optimistic look on it!
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Today Ryan sent Jude's DynaSplint and of course I had to shake my finger at him for just sending the splint, no note or anything, the nerve of him. But as he says you get what you get and you don't throw a fit! So Jude is back to being RoboJude at night. I'm thinking that I should have gotten a 2 bedroom apartment because with his brace on his right foot and a cast on his left arm I may get a little bruised sleeping with him tonight. His DynaSplint is the most wonderful thing in the world and gets the best results. It is a metal boot that gives him a passive stretch when he is sleeping so he doesn't notice it as much. When he wakes up he can push his foot out but when he relaxes it slowly stretches again. I wish he could have one for his hamstring now, it's so tight and I think that is what causes him to limp a little bit. By using the DynaSplint we have been able to avoid bottom injections for 18 whole months. That makes me so happy, the injections and serial casting is hard on him.
I am so excited for tomorrow, I am going to lunch with another mom who is here with her daughter also. I am really looking forward to it because I will get some much needed adult interaction and I have never actually known anyone who's child had a stroke as well. And Jude has already started a countdown for Friday when Grandpa comes. Grandpa told him he would get here about 10:00 and if Jude wasn't up he was going to jump on him. But Jude already has a plan to put his righty out to clothesline Grandpa if he jumps on him. I think they're both a bit excited. Poor Jude has been with only me for 2 weeks, don't know how anyone survives me for that long!
I know it's pushing it but it's almost the weekend then after the weekend we will be over the halfway bump and then it's all downhill from there. The ever optimistic look on it!
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Location:Birmingham,United States
Tuesday, May 24, 2011
My superman
Jude for sure was my superman today, he did such a great job with the cast change! He INDEPENDENTLY buttons his shirt, snapped and zipped his own pants, put on his socks, and tyed his shoes. And it's only the FIRST cast change of the treatment. I cannot believe that progress! He also did a lot of weight bearing and I was shocked to see how strong he is. It was an awesome day!
I know I already updated you today but I wanted to share his new cast with everyone. Like I said before, you can take the boy out of Wisconsin but you can't take the Wisconsin out of him!
Teach me how to Bucky
Teach me
Teach me how to Bucky!
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Location:Birmingham,United States
Unbelievable
I always had faith that there was something bringing us back to UAB. Jude had great results last time but not without struggles. It's a hard road we're on but we've been on this before, I know there is something that made all these hard times worth it. It clicked last night, Jude spontaneously stretched with his right arm. Jude was so relaxed that he woke up for a minute, reached up and straightened his elbow then went back to sleep like that. It was amazing. Now I am tired because I spent half the night watching him!
Yesterday was a hard day; we both were tired, missing home, and a bit off. Jackie (Jude's therapist) told us that sometimes we take one step back for some great gains and she could not have been more correct. Today he is able to supinate better, push and lift heavier weights, and use a pincer grasp like a pro. Such a better day and it's only half into it! I usually write about our day in the evening after Jude goes to bed but I was just so excited to let everyone know about the progress. Last night it was like a bucket of water dropped on me when I saw Jude extend his arm, it makes all the hard work worth it. I guess that is why you have to have faith in your decisions as a parent that you are doing the right thing. Last night proved that to me.
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Location:Birmingham,United States
Monday, May 23, 2011
Case of the Monday's
Today was harder than some, I think we both had a case of the Monday's. Jude had to have a lot of reminders today to keep his wrist up and watch his fingers to keep them straight. I hope it wasn't because we didn't work hard enough on our day off yesterday. Jackie said that sometimes kiddos take one step back to take three steps forward and I hope this is the case. I'm worried about leaving and seeing a lot of regression. Last time we came there was a bit of regression but we followed the rules and kept up with the home program so minimized it a bit. One of the rules was that he eat breakfast and lunch with his right hand and he still does that three years later. But he is getting over 120 hours of therapy during this 21 day treatment time and that is something I can't compete with. I'm making thousands of notes trying to remember the little cues or where Jackie puts her hand to make Jude supinate, I just hope it works.
Got a wonderful package from Granny and Gramps today and that lifted the spirits. Of course, as always, Granny picks out the best books and we read a book totally appropriate book called Courage. I told Jude how I thought he was the most courageous 5year old boy I have ever met and he gave me a big (righty!) hug. We loved it, thank you so much for sending the love.
Tomorrow is our first cast change and I am a bit nervous about it. When he had serial casting in conjunction with Botox the first time he got a cut on his little foot that is still a scar. I know they took such great care in padding the cast because I think they like Jude almost as much as we do but it just scares me. He is going to get a bit of time out of the cast to work on some bilateral tasks (like tying his shoe!) and take a bath. I hope it all goes well, I know it will, just the worrier in me! I will post photos of his new cast tomorrow!
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Got a wonderful package from Granny and Gramps today and that lifted the spirits. Of course, as always, Granny picks out the best books and we read a book totally appropriate book called Courage. I told Jude how I thought he was the most courageous 5year old boy I have ever met and he gave me a big (righty!) hug. We loved it, thank you so much for sending the love.
Tomorrow is our first cast change and I am a bit nervous about it. When he had serial casting in conjunction with Botox the first time he got a cut on his little foot that is still a scar. I know they took such great care in padding the cast because I think they like Jude almost as much as we do but it just scares me. He is going to get a bit of time out of the cast to work on some bilateral tasks (like tying his shoe!) and take a bath. I hope it all goes well, I know it will, just the worrier in me! I will post photos of his new cast tomorrow!
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Location:Birmingham,United States
Sunday, May 22, 2011
Sunday Fun Day
Jude worked so hard all week so today we got to play hard! We went to the McWane Science center downtown and it was awesome. I asked Jude was his favorite part was, it was a toss up between petting the sharks and stingrays
And the pin walls.
He said it was so hard for him to choose, he loved them all! My favorite part was the IMAX movie Born to be Wild. If you have not seen that, you need to go!
We definitely had a great time. Then we went to the Cheesecake Factory for dinner, like the day could get any better. Jude ate so much cheesecake I thought he was going to turn into a Reese's Peanut Butter cup cheesecake.
I finally got Jude to take a bath last night. His cast is not water proof and he was so nervous about getting it wet. I wrapped it in a garbage bag and not a drop got in it luckily. After several days of this Alabama heat and playing at the park I think he needed the whole half hour soak! He loves baths so much.
Tomorrow starts week #2 and after today we are totally ready to start work again. Grandpa will be coming up at the end of the week and they have some pretty fun things planned. I am getting a little nervous about leaving Jude but I know they will have a ton of fun. Luckily I have some time before that happens.
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And the pin walls.
He said it was so hard for him to choose, he loved them all! My favorite part was the IMAX movie Born to be Wild. If you have not seen that, you need to go!
We definitely had a great time. Then we went to the Cheesecake Factory for dinner, like the day could get any better. Jude ate so much cheesecake I thought he was going to turn into a Reese's Peanut Butter cup cheesecake.
I finally got Jude to take a bath last night. His cast is not water proof and he was so nervous about getting it wet. I wrapped it in a garbage bag and not a drop got in it luckily. After several days of this Alabama heat and playing at the park I think he needed the whole half hour soak! He loves baths so much.
Tomorrow starts week #2 and after today we are totally ready to start work again. Grandpa will be coming up at the end of the week and they have some pretty fun things planned. I am getting a little nervous about leaving Jude but I know they will have a ton of fun. Luckily I have some time before that happens.
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Location:Birmingham,United States
Saturday, May 21, 2011
Week #1 is done!
Well, week #1 is done and so much progress has been made. Jude can do so much more than he could do before and has so much more range of motion. Today he played with his new remote control monster truck and sword fought during therapy. It's really neat to watch although he is doing fun stuff it is 100% therapy. He made a monster jam obstacle course by squeezing out playdoh and pulling apart Legos to make this track. It took over 30 minutes of work for a 5 minute run with his new truck. Jackie does such a great job at working hard first then playing hard and it makes it fun for Jude. I've seen him trying to push his table across the room with a 20 lb bean bucket on top just to eat breakfast. And he has such a great personality that it works. He really doesn't mind the hard work because he just knows that's the deal. I think that is what will make him successful when he is older and has a choice with therapy.
After therapy we went back to the park to play with his new kite and monster truck. Jude flew a kite with his right hand only. I was so amazed! He was running all over this field and didn't drop the string once. He had a great time. Then we went to his favorite BBQ place. Last time we were in Alabama for Acquire therapy we spent the month finding the best BBQ place so we could bring the best sauce back for Uncle Pete. Full Moon BBQ took first place so we had to go back.
Tomorrow, our only day off until next week, we are going to the McWane Science center in Birmingham. We are going to watch the IMAX and check it out and I think we may even go to the Original Pancake House (sorry to make you drool Aunt Julie!) for breakfast. Fun times!
Wishing our cousin Eli a great baptism day tomorrow, wish we could be there but we are thinking of you! Have a great Sunday!
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After therapy we went back to the park to play with his new kite and monster truck. Jude flew a kite with his right hand only. I was so amazed! He was running all over this field and didn't drop the string once. He had a great time. Then we went to his favorite BBQ place. Last time we were in Alabama for Acquire therapy we spent the month finding the best BBQ place so we could bring the best sauce back for Uncle Pete. Full Moon BBQ took first place so we had to go back.
Tomorrow, our only day off until next week, we are going to the McWane Science center in Birmingham. We are going to watch the IMAX and check it out and I think we may even go to the Original Pancake House (sorry to make you drool Aunt Julie!) for breakfast. Fun times!
Wishing our cousin Eli a great baptism day tomorrow, wish we could be there but we are thinking of you! Have a great Sunday!
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Location:Birmingham,United States
Friday, May 20, 2011
You can take the boy out of Wisconsin but you can't take Wisconsin out of Jude. Today Jude frosted cookies with Ms Jackie today and he chose white and red icing, just for Wisconsin. He did a great job spreading out the icing with his right hand and putting m&ms on with a pincer grasp.
Then, much to my amazement, Jude practiced tying a shoe. Ms Jackie was his lefty and righty was looping and crossing like crazy! Snce he wears a brace on his foot Velcro shoes just don't work for him and the thought of him being to manipulate the small laces didn't cross my mind before now. So after therapy we got a new pair of Tye Dye Converse shoes with blue and checkered shoe laces. Righty will be in charge of the checkered ones while lefty will get the blue ones once he is freed. Jude is very excited!
We also watched the Sword in the Stone tonight which is a great movie. We both really enjoyed it. We ate yummy Yankees pizza which is a pizzeria here in Birmingham that we will sadly miss. Jude has already asked if we could bring a pizza home to Clayton.
Tomorrow is the only Saturday that we have therapy and it will be the only weekend I am with Jude alone. On week 3 of therapy Grandpa is coming down for a couple days then Ryan is going to be down for the rest of that week. Even though I am going to miss Jude I know he will have a really good time with the boys week. I am looking forward to seeing Clayton, I really miss him. Jude is already planning his arrival back home, he says he wants to have a bonfire and stay over at Grandma's house then have another party at our house with Lauren then have a Grandma and him only day, I think he misses her!
I am continuously talking to Jude about how we are going to carry over our therapy back to Indiana and I hope he is remembering a little bit! It's amazing how many bad habits Ms Jackie has to retrain. Jude has a lot of pronation in his wrist (where his thumb goes towards the floor rather than even with his pinky) and it's really hard for him to stop turning in. But today when I did some stretching to that muscle I lost my breath. His range in his wrist has increased so much in just one week. For all my tx friends who know what I am talking about, he increased supination probably 5 degrees in a week! So the results are speaking for itself, I have to believe all the frustration is worth it. I guess it is for now, we will keep you updated until we know for sure!
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Then, much to my amazement, Jude practiced tying a shoe. Ms Jackie was his lefty and righty was looping and crossing like crazy! Snce he wears a brace on his foot Velcro shoes just don't work for him and the thought of him being to manipulate the small laces didn't cross my mind before now. So after therapy we got a new pair of Tye Dye Converse shoes with blue and checkered shoe laces. Righty will be in charge of the checkered ones while lefty will get the blue ones once he is freed. Jude is very excited!
We also watched the Sword in the Stone tonight which is a great movie. We both really enjoyed it. We ate yummy Yankees pizza which is a pizzeria here in Birmingham that we will sadly miss. Jude has already asked if we could bring a pizza home to Clayton.
Tomorrow is the only Saturday that we have therapy and it will be the only weekend I am with Jude alone. On week 3 of therapy Grandpa is coming down for a couple days then Ryan is going to be down for the rest of that week. Even though I am going to miss Jude I know he will have a really good time with the boys week. I am looking forward to seeing Clayton, I really miss him. Jude is already planning his arrival back home, he says he wants to have a bonfire and stay over at Grandma's house then have another party at our house with Lauren then have a Grandma and him only day, I think he misses her!
I am continuously talking to Jude about how we are going to carry over our therapy back to Indiana and I hope he is remembering a little bit! It's amazing how many bad habits Ms Jackie has to retrain. Jude has a lot of pronation in his wrist (where his thumb goes towards the floor rather than even with his pinky) and it's really hard for him to stop turning in. But today when I did some stretching to that muscle I lost my breath. His range in his wrist has increased so much in just one week. For all my tx friends who know what I am talking about, he increased supination probably 5 degrees in a week! So the results are speaking for itself, I have to believe all the frustration is worth it. I guess it is for now, we will keep you updated until we know for sure!
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Thursday, May 19, 2011
Another great day
Another great day! Jude is getting so strong, I can't believe my eyes. He was doing wrist exercises today with a 1 pound dumbbell and rocked. He is pushing about 20 pound buckets around the apartment all the time, it's fun to watch. Sometimes he is working so hard that his little face gets red and you can see his neck veins, my little body builder! He is almost completely independent at holding a cup, the only help he needs it to pick it up from the table. I never expected this many gains this quickly; I should have, he's my little rockstar! After "work" today we went to the park, boy it's hot here in Alabama without any shade! Since Jude is older this time I let him answer when people ask what happened to his arm. In a brave nonchalant voice he just says oh, it's for therapy. They look at me like I'm nuts but it's much better than the answers I used to give in 2008. (I used to tell them he needed an advantage when wrestling with his brother since he was younger or something like that!)
Tomorrow he and Ms Jackie are going to decorate cookies even though Grandpa said he wasn't here to have fun he was here to work (what a joker Grandpa is!). I can't believe tomorrow is Friday. Week #1 of Acquire therapy is almost done. Monday seems like forever ago and just yesterday all at the same time. We still have therapy this Saturday so we don't get the whole weekend off but we plan to make good use of the weekend anyway. It can't come soon enough! Happy almost weekend!
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Tomorrow he and Ms Jackie are going to decorate cookies even though Grandpa said he wasn't here to have fun he was here to work (what a joker Grandpa is!). I can't believe tomorrow is Friday. Week #1 of Acquire therapy is almost done. Monday seems like forever ago and just yesterday all at the same time. We still have therapy this Saturday so we don't get the whole weekend off but we plan to make good use of the weekend anyway. It can't come soon enough! Happy almost weekend!
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Location:Birmingham,United States
Wednesday, May 18, 2011
Fun day
Today was a great day! We tried to go on a nature hike behind our apartment but the trail was covered with broken trees. About a month ago tornados ripped through the area and there is so much devastation around us. Right behind our apartment are trees broken in half and almost every house has their roof tarped. Glad we were not a month earlier. Jude also got to play wii bowling today. It's difficult for him to release it when he is rolling the ball but it was a great start.
Clayton is doing really well also, Ryan is out of town so he's hanging out at Grandma and Grandpa's house. He called me a couple of times today to ask me if he could watch some tv shows. I have to say, that kid is one of the best. I am probably one of the more strict moms in regards to the tv and unfortunately for him I said no to UFC, world's dumbest, and adventure time. He just said ok and found something else, what a guy. I think he likes his one on one time just as much as Jude does!
Tomorrow Jude is going to try to wear pants with a fastener on them. The movement for buttoning a fastener are the same as tying a shoe and pretty soon he will be starting that task. We're still doing a lot of strengthening exercises with Ms Jackie. Mary Rebekah (the head OT) brought over a ski rope and tied the chair up so he could pull it across the room. I asked him if I could sit in it and he could pullme but he looked at me like I was nuts! I told him maybe at the end of therapy but he didn't get excited! who knows what he hill be doing come June 10, at the rate he's progressing I wouldn't rule that out, he's a rockstar!
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Clayton is doing really well also, Ryan is out of town so he's hanging out at Grandma and Grandpa's house. He called me a couple of times today to ask me if he could watch some tv shows. I have to say, that kid is one of the best. I am probably one of the more strict moms in regards to the tv and unfortunately for him I said no to UFC, world's dumbest, and adventure time. He just said ok and found something else, what a guy. I think he likes his one on one time just as much as Jude does!
Tomorrow Jude is going to try to wear pants with a fastener on them. The movement for buttoning a fastener are the same as tying a shoe and pretty soon he will be starting that task. We're still doing a lot of strengthening exercises with Ms Jackie. Mary Rebekah (the head OT) brought over a ski rope and tied the chair up so he could pull it across the room. I asked him if I could sit in it and he could pullme but he looked at me like I was nuts! I told him maybe at the end of therapy but he didn't get excited! who knows what he hill be doing come June 10, at the rate he's progressing I wouldn't rule that out, he's a rockstar!
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Tuesday, May 17, 2011
The days are long but the years are short
So not sure if this is the way in every family or not but when I was a kid and we had an emergency my mom (who faints when getting her finger pricked) was always the one who held it together for as long as she had to. No matter how much blood or how gross our broken bones were she was always as strong as a rock. That is until my dad arrived, then she broke down! I tried to be like her today; shhh, don't tell anyone, I swore I'd never say that out loud! It's hard seeing your child struggle, I just want to go help him but I know it's not doing him any favors. I know at some point we, as parents, need to let them spread their wings and do things themselves. I just never knew it would be this hard or this soon. Someone pass me a brick to put on this child's head so he'll stop getting bigger!
Jude again was amazing today. He is able to hold a cup in his right hand and drink from it which I never expected this soon. He is getting stronger by the minute it seems. He was doing obstacle courses all day today and was so proud of himself when he pushed the big toy bin across the room. I hope our downstairs neighbor works during the day! After therapy we hit the mall for the movie Rio. Apparently no one else goes to the 2:30 show on a weekday so we had the theater all to ourselves. We were on a roll so before dinner we went to the grocery store for some Popsicles. Tomorrow we are going to take a walk on the hiking trail behind our apartment; I hear there may be a park we can visit. We're even going to have a home cooked dinner after.
It's been nice here in Alabama because we're not racing around we have the time to read at night. We brought The Magic Treehouse books along and Jude loves to read a couple of chapters before bed. He is so excited to hear what happens that he'll only read one page then I have to read the rest!
I can't believe next year he will be in kindergarten, we are working towards holding a tray so he's ready for that in September. There are a lot of school type skills he will be learning to do in the next couple of weeks. I will keep you posted with all the skills he's learning!
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Jude again was amazing today. He is able to hold a cup in his right hand and drink from it which I never expected this soon. He is getting stronger by the minute it seems. He was doing obstacle courses all day today and was so proud of himself when he pushed the big toy bin across the room. I hope our downstairs neighbor works during the day! After therapy we hit the mall for the movie Rio. Apparently no one else goes to the 2:30 show on a weekday so we had the theater all to ourselves. We were on a roll so before dinner we went to the grocery store for some Popsicles. Tomorrow we are going to take a walk on the hiking trail behind our apartment; I hear there may be a park we can visit. We're even going to have a home cooked dinner after.
It's been nice here in Alabama because we're not racing around we have the time to read at night. We brought The Magic Treehouse books along and Jude loves to read a couple of chapters before bed. He is so excited to hear what happens that he'll only read one page then I have to read the rest!
I can't believe next year he will be in kindergarten, we are working towards holding a tray so he's ready for that in September. There are a lot of school type skills he will be learning to do in the next couple of weeks. I will keep you posted with all the skills he's learning!
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Location:Birmingham,United States
Monday, May 16, 2011
Today Jude got his first cast on and met his therapist Ms Jackie. He was so brave getting his cast on! He was nervous about being cut by the cast saw but luckily they only use a scissors to cut it off so it made us a little less apprehensive. But he took it like a champ and picked out a bright blue color for his cast.
Today he is working a lot on form and strength in his wrist. A lot of the time he holds his hand with his wrist flexed (like a lot of stroke patients do) because he doesn't have a lot of strength. He has learned so many adaptive tricks which is not necessarily a bad thing for when he is older. I really want him to learn the correct way now and later adapt to his needs later in life. That is one core difference between my ideas and the school system too. They think it is "not their job to teach him the correct way to do it" so long as he is functional in what he is doing. They say this is the core of a "medical model" versus "educational model". I can't say I agree with that mindset, after all if the school is not there to teach what are they there for? But that's another argument which I will get into on a less eventful day in Alabama.
Jude did great in therapy, I was amazed to see how much progress he made in just a half day. But when Jackie left was when things got hard. He doesn't understand why he has to have the cast on and why it is so hard for him to do the things he could before. He is too brave to ask anyone other than me why and it breaks my heart. Needless to say, there was a lot of spoiling today. Chili cheese fries and a butterfingers shake were on the menu for dinner tonight and that was OK with me. I am a little drained from trying to hold it all together and be strong for Jude, I can only imagine how he feels. That being said, time for me to go snuggle with Jude and hopefully get some sleep. Therapy starts bright and early tomorrow at 8:00 am.
Day 1 down, 20 more to go!
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Today he is working a lot on form and strength in his wrist. A lot of the time he holds his hand with his wrist flexed (like a lot of stroke patients do) because he doesn't have a lot of strength. He has learned so many adaptive tricks which is not necessarily a bad thing for when he is older. I really want him to learn the correct way now and later adapt to his needs later in life. That is one core difference between my ideas and the school system too. They think it is "not their job to teach him the correct way to do it" so long as he is functional in what he is doing. They say this is the core of a "medical model" versus "educational model". I can't say I agree with that mindset, after all if the school is not there to teach what are they there for? But that's another argument which I will get into on a less eventful day in Alabama.
Jude did great in therapy, I was amazed to see how much progress he made in just a half day. But when Jackie left was when things got hard. He doesn't understand why he has to have the cast on and why it is so hard for him to do the things he could before. He is too brave to ask anyone other than me why and it breaks my heart. Needless to say, there was a lot of spoiling today. Chili cheese fries and a butterfingers shake were on the menu for dinner tonight and that was OK with me. I am a little drained from trying to hold it all together and be strong for Jude, I can only imagine how he feels. That being said, time for me to go snuggle with Jude and hopefully get some sleep. Therapy starts bright and early tomorrow at 8:00 am.
Day 1 down, 20 more to go!
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Sunday, May 15, 2011
Our first day in 'Bama
Well, while we are here in Alabama I am going to try this whole blogging thing, I'm not sure if I will be any good at it or if I will even have the time but I will try it to keep everyone updated on the Judian chronicles!
Today was our first day here in Alabama getting Jude and I settled into our apartment life. We decided to take a couple days off work and school to enjoy a beach vacation before we start therapy on Monday. So this morning we had to say goodbye to Clayton, Daddy, Grandma and Grandpa after a great vacation to Destin, Florida. Tomorrow we will go to UAB campus and start our 1 month long program of Constraint Induced Movement Therapy (CIMT). We are back for a second round after such a successful trip here in 2008.
Perhaps I should start with a brief history of what brought us here. Jude had a stroke on the left side of his brain at birth and was diagnosed with Cerebral Palsy Right Hemiperesis at 8 months old. No one is really sure why it happened and we don't look back, we only focus on what's ahead. He is such a handsome little 5 year old boy that makes everyone around him smile. His life and our family life revolves around therapy day and night. He has taught us all how to put our heads down and succeed no matter how high the hill is in front of us. Which brings us here to UAB.
We are here for an intense rehab therapy done by University of Alabama Birmingham called Acquire therapy.
We will go in for a pre-test to evaluate Jude's skills and after the 4 weeks of therapy they will do a post-test to see how he has progressed. I hope we have the same great results we had in 2008. Last time we came he went from a raking grasp to picking up cheerios with a pincer grasp and putting them in his mouth.
He will get a full cast from his shoulder to past his fingertips on his unaffected side which for Jude is his left side. So will be forced to do all tasks (eating, dressing, itching, etc) with his right hand. A therapist will come over to our apartment for 6 hours each day Monday through Friday and work with Jude to help build new pathways in his brain. It's a really hard thing for me as a parent to watch but even harder for him to go through. He works so hard and although he is only 5 years old I can see the determination he has to do everything he is asked. If it were me I would have given up a long time ago but not my sweet Jude, he's in it to win it as they say.
Tomorrow will bring new obstacles as it will be the first day with his cast but I am going to stay as positive as I can be and have as much fun as we can! Today was filled with shopping, coloring, Lego building, and reading and was a great time. I am sure tomorrow will be the same with as much spoiling as he can handle! He is one of the greatest boys I have ever come across. Without him, along with all the hills he has to climb, we wouldn't be the same.
We are both really lucky to have the support we have with our friends and family. He has so many people in his corner cheering him on. Without his Aunt Julie and Uncle Peter (and cousins Grace and Jack!) and his Grandma and Grandpa DeBruin our trip to UAB wouldn't be possible (as of right now insurance declined the therapy but we are appealing!) because of the cost. We have been able to focus on Jude's therapy rather than how to afford it which makes for a lot easier breathing, so thank you from the bottom of our hearts. And without my parents we would never be able to split the time between Indiana and Alabama, they have the hard job of taking care of Clayton. We as a family are forever grateful.
I will try to keep you posted with photos and notes as much as we can so you can all take this journey with us. Hopefully he can give everyone reading this as much strength as he gives me. Jude is amazing!
- Posted using BlogPress from my iPad
Today was our first day here in Alabama getting Jude and I settled into our apartment life. We decided to take a couple days off work and school to enjoy a beach vacation before we start therapy on Monday. So this morning we had to say goodbye to Clayton, Daddy, Grandma and Grandpa after a great vacation to Destin, Florida. Tomorrow we will go to UAB campus and start our 1 month long program of Constraint Induced Movement Therapy (CIMT). We are back for a second round after such a successful trip here in 2008.
Perhaps I should start with a brief history of what brought us here. Jude had a stroke on the left side of his brain at birth and was diagnosed with Cerebral Palsy Right Hemiperesis at 8 months old. No one is really sure why it happened and we don't look back, we only focus on what's ahead. He is such a handsome little 5 year old boy that makes everyone around him smile. His life and our family life revolves around therapy day and night. He has taught us all how to put our heads down and succeed no matter how high the hill is in front of us. Which brings us here to UAB.
We are here for an intense rehab therapy done by University of Alabama Birmingham called Acquire therapy.
We will go in for a pre-test to evaluate Jude's skills and after the 4 weeks of therapy they will do a post-test to see how he has progressed. I hope we have the same great results we had in 2008. Last time we came he went from a raking grasp to picking up cheerios with a pincer grasp and putting them in his mouth.
He will get a full cast from his shoulder to past his fingertips on his unaffected side which for Jude is his left side. So will be forced to do all tasks (eating, dressing, itching, etc) with his right hand. A therapist will come over to our apartment for 6 hours each day Monday through Friday and work with Jude to help build new pathways in his brain. It's a really hard thing for me as a parent to watch but even harder for him to go through. He works so hard and although he is only 5 years old I can see the determination he has to do everything he is asked. If it were me I would have given up a long time ago but not my sweet Jude, he's in it to win it as they say.
Tomorrow will bring new obstacles as it will be the first day with his cast but I am going to stay as positive as I can be and have as much fun as we can! Today was filled with shopping, coloring, Lego building, and reading and was a great time. I am sure tomorrow will be the same with as much spoiling as he can handle! He is one of the greatest boys I have ever come across. Without him, along with all the hills he has to climb, we wouldn't be the same.
We are both really lucky to have the support we have with our friends and family. He has so many people in his corner cheering him on. Without his Aunt Julie and Uncle Peter (and cousins Grace and Jack!) and his Grandma and Grandpa DeBruin our trip to UAB wouldn't be possible (as of right now insurance declined the therapy but we are appealing!) because of the cost. We have been able to focus on Jude's therapy rather than how to afford it which makes for a lot easier breathing, so thank you from the bottom of our hearts. And without my parents we would never be able to split the time between Indiana and Alabama, they have the hard job of taking care of Clayton. We as a family are forever grateful.
I will try to keep you posted with photos and notes as much as we can so you can all take this journey with us. Hopefully he can give everyone reading this as much strength as he gives me. Jude is amazing!
- Posted using BlogPress from my iPad
Location:Birmingham,United States
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