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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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!




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Location:Birmingham,United States