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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Location:Fishers,United States

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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Location:Fishers,United States

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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Location:Birmingham,United States

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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Location:Birmingham,United States

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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Location:Birmingham,United States

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

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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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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Location:Church St,Nashville,United States

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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Location:Fishers,United States

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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Location:Fishers,United States

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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Location:Fishers,United States