Jaxson’s Progress

*Top picture, he just woke up with sleepy eyes 🙂 this image was captured by my daughter two days ago with her iPhone, I wanted to share his most recent photo.

I want to thank everyone for your kind support of Jaxson over the past year. He has been making great progress and I would like to take a moment here and brag like a proud grandma. Jaxson won his first swim event!! I say first because he is like a fish in the water and we want to encourage that with additional swim lessons and swim therapy. Ok, back to his big win-he raced against other children his age (non with disabilities), he had an aid that helped to turn him over so that he could take a few breaths, other than that he beat them all by a mile-well, maybe just a few feet!!! Tears of joy ran down my face the first time I saw the video. I was away when he raced but luckily my daughter video taped it.

Jaxson’s progress has been a long, slow, drawn out process but it has been progress and every bit of it has been worth the two surgeries. For those of you that are new to the blog and want to learn more about Jaxson and his journey click here. His muscles are developing and he has had a huge growth spurt. This year he started mainstream first grade and has a few of his friends from kindergarten in his class. He enjoys school and is happy every day that he gets off the bus. Jaxson is doing great in math and he is using a tablet (instead of writing as it is laborious for him to write) so that he can keep up with the other kids. My daughter hired a tutor for extra help to make sure he is keeping up.

Right now Jaxson uses his walker and can walk about 2000 steps at a time, however at school he uses a wheelchair. I am against the use of the wheelchair but the school feels that he takes too much time getting from one class to another. I don’t want him lagging behind so I guess it is ok, not great, but ok. My main concern is once in a wheelchair always in a wheelchair… If I sound more like his mother than grandmother it is only because I love him so dearly but I am 100% his grandmother as his mother and father set the boundaries and have to be tough on him -it’s my job to spoil him and I intend to do so! During all of this we (when I say we, I mean my daughter, her husband and I) are never once forgetting Tanner (his younger brother), he gets loads of attention and is about the cutest thing in the world. He just learned to swim and is fully potty trained and very proud of it!

We have been researching Stem Cell Therapy and its benefits for children with CP. My daughter made a conference call with a Dr. in California to set up Jaxson’s first Stem Cell Therapy. My fingers are crossed, she has been following a young girl that presents like Jaxson and she has done extremely well with the therapies; each time improving just a bit. I’ll be in Kenya during the conference call but I am hopeful that she can schedule the first treatment when I am home so that I can be there. Fingers crossed!

Through this all, my family feels truly blessed. During Jaxson’s hospital stays we have seen many children that have a lot less hope than Jaxson. And believe me, we count our lucky stars daily. One of the things that we can’t help but worry about is Jaxson gaining acceptance from his classmates. The thought of someone making fun of him for the challenges he faces breaks my heart. Please if you have children and have not already spoken to them–make them aware that everyone is different and everyone is good at something. Thanks and hugs, denise

Did you like this? Share it:

45 Responses

  1. Sally Foster says:

    So very very glad to hear the news about Jaxson. He won my heart even though I have never met him.

    Hi Sally, thank you for your kind support of Jaxson.
    hugs,
    denise

  2. Nancy Bell says:

    So good to hear this positive update! And I too, loved the video clip of Jaxson winning the swim event! Your love for Jaxson and his family is so apparent and heartwarming that it makes me all the more aware of the importance of love in all our relationships with others.

    Hi Nancy, thanks for watching the video clip! I was so happy for him. He won a medal and it was the first thing he told me when I got home.
    hugs, denise

  3. Sharon Hallowell says:

    I think one time I said to you….”you would be good at whatever you attempt to do”. So glad Jaxson got that gene! It’s easy to see how much you love him through your words, and one look at his handsome little face and that beaming smile, just brings joy to my soul! I would imagine that swimming is one of the best things for him, Please tell him I’m proud of him, too! First place???? That’s just awesome!
    Thank you so much for the update, Denise!

    Some “fishy” jokes for him: What did the trout detective say?
    There’s something fishy going on here.

    How many tickles does it take to make an octopus laugh?
    Tentacles.

    What do fish use for money?
    Sand dollars.

    Hi Sharon, he loves jokes so I will share them with him! Thank you so much for your kind support.
    hugs, denise

  4. Sue Harvey Eberhart says:

    First graders have a special place in my heart and your darling Jaxson is one special little boy in so many ways. Having you as his grammy is one of them!

    Thank you so much Sue, I appreciate your kind words.
    hugs, denise

  5. JP Bruce says:

    I was thinking of him the other day so thanks for posting. Swimming is great. It was one of my favorite things. Getting free of gravity felt so good. I had endurance but not speed in the water. I know times have changed but I never had a problem with bullying or discrimination growing up. I hope he has the same luck. Looking for work was a problem in later life. My best wishes for you, Jaxson and his whole family.

    Hi JP, That is good news and gives us even more hope for his future. I am hoping that in today’s world he will be able to find good employment when he graduates college. But we have some time before we need to worry about that. One day at a time 🙂
    thanks, denise

  6. Kathy Bishop says:

    I’m so glad to hear this happy news. He certainly is a trooper.

    Thank you Kathy, yes, he is!
    denise

  7. Cindy Garnett says:

    Great news. Your love for him shines through overwhelmingly! He is lucky to have you.

    Thank you Cindy, we are the lucky ones!
    denise

  8. Catherine Costolo says:

    Wonderful news! Thanks for sharing it with us.

    Hi Catherine, thanks so much for allowing me to gush over him 🙂
    denise

  9. Luc Schoonjans says:

    Sending you and your family Love and Healing Thoughts

    Hi Luc, I hope you have been well. Thank you so much for your kind words.
    hugs, denise

  10. Thanks for sharing the update on Jaxson! So glad to hear of the progress he is making and hope he continues to make even more progress as time goes by. Wishing you and your family all the very best as Jaxson makes more progress!

    Thank you Andrew, my family appreciates it.
    denise

  11. Carolyn says:

    Wonderful Denise to have an update on Jaxson’s progress and triumphs. I had been wondering how he was progressing. Fingers crossed that he is a candidate for the stem cell procedures.

    Hi Carolyn, thank you so much for your positive thoughts.
    denise

  12. Elizabeth Lodwick says:

    What a good looking boy. I am so glad he is doing well, he deserves the best and he certainly has it in his grandmother. Thank you for sharing his story

    Hi Elizabeth, thank you so much for your kind words. Hugs to you and Steve.
    denise

  13. Evelyn Young says:

    Hi Denise. You are definitely entitled to grandmother’s bragging rights. I am so happy to hear about Jaxson’s progress. He sounds like a delight. Good luck with the stem cell therapy.

    Hi Evie, thanks so much! We appreciate everyone keeping him in their thoughts.
    hugs, denise

  14. Jackie Ross says:

    That is wonderful to hear! Will keep you all
    In my prayers!! God Bless!

    Hi Jackie, thank you so much.
    hugs, denise

  15. Sylvia Rourke says:

    Dear Denise,

    I’m so very happy to hear of Jaxson’s amazing progress so far. This is truly wonderful news.

    Thanks for the update, Jaxson is part of our lives now, keep those updates coming.

    My love to you and your family.

    Hi Sylvia, thank you kindly, it means so much! I miss your smile!
    hugs, denise

  16. Carmenza says:

    Wonderful news. Miracles are a gift from heaven, he is your little miracle!!

    Yes, he is Carmenza, thank you so much!
    denise

  17. Lynn Fulton says:

    Woot Woot! Yay Jaxson – what a great accomplishment… Jen must be so proud! Fingers crossed that all goes according to plan – he’s a tough little man, and he’s got such wonderful support behind him. Kudos to you and your family for always finding the best for him.

    Hi Lynn, Thanks, hopefully things will go well with the stem cell, but we have to try 🙂 fingers crossed.
    hugs, denise

  18. Tom Rostron says:

    Nice to hear this great news Denise. Thanks for sharing

    Hi Tom, thanks so much, it is nice to hear everyone’s cheering Jaxson on!
    denise

  19. Patti Edens says:

    So good to hear of Jaxson’s progress and hope for future progress with stem cell treatment. Buying and donating several copies of the book WONDER to the library at Jaxson’s school and one for his teacher might help with your concerns about his treatment at school. Maybe his teacher can read bits of the book to his class??

    That’s a great idea Patti! Thank you. At the start of the school year my daughter sent a letter to each of his classmates parents explaining that Jaxson has CP, etc… And all of the teachers know Jaxson (it’s a small town) I think that really helps.
    denise

  20. Wow!! Jaxson! All of your Grandmother’s friends are SO proud of you.

    Go MAN go!! Jim above is right. You’re a Champ.

    CHAMP JAX !!!! COOOOL!

    Good job, family.

    Hi Brent, I can hear you cheering through the internet!! Thank you so much! It truly does mean a lot!
    hugs, denise

  21. Genevieve Rudock says:

    That’s awesome Denise, I hope his progress grows as big as grandma’s pride.

    Awe… now don’t make me cry Genevieve! Thank you.
    denise

  22. I have been following Jaxson through his procedures and am so glad he’s doing so well. As a grandmother myself of 3 boys ages 4 through 8, my heart and soul is with you and your family. Much love.

    Hi Marilyn, thank you so much for your continued support!
    denise

  23. Muriel McClellan says:

    Thank you for sharing. Loved hearing the joys of you being a grandmother to a very special young man. Pulling for more successful moments for him.

    Thank you Muriel, much appreciated!
    denise

  24. Kathe Kane says:

    So glad to hear this wonderful update. I can just see your big, proud smile!!

    Thank you so much Kathe!
    denise

  25. Bonnie Rovere says:

    That is really great news! I am so happy for him and your family as well!

    Thank you kindly!
    denise

  26. Ron May says:

    Thanks for the update. I am happy to hear that everything is looking up for Jaxson.

    Thank you so much Ron!
    denise

  27. Deborah Kral says:

    Thanks so much for the update, Denise and sharing Jaxson’s continued progress – I had been wondering how he was doing. FANTASTIC about his win, he must have been thrilled!!

    He sure was!! We all were, thanks Deb!
    denise

  28. Carm & Judy Griffin says:

    Hey, proud Grandma, shout it out, share it, totally enjoy the moment and your darling boy!
    Wonderful news!
    All the best for Jaxon, and all of you.

    Hi Carm and Judy, thank you so much, it is so nice to know you are so supportive!
    denise

  29. James Saxon says:

    Thanks for the update. Glad he is progressing and in mainstream school. He will be fine because the attached photo shows me a happy child and that is a big part of winning in life. I don’t think he is going to let anything stop him from achieving and being happy. Safe travels.

    Hi James, thank you so much for taking the time to comment, given everything on your plate.
    hugs, denise

  30. Bill Goodhew says:

    I had a stem cell transplant 7 years ago to address my extensive multiple myeloma. It worked, and I am now clinically cancer-free. This is, of course, a well-established therapy for mm, not the same thing as Jaxson’s disorder, but it has been applied for almost 30 years and just shows what science can do.

    Go Jaxon!

    Hi Bill, that is good to know, thank you for sharing.
    hugs, denise

  31. Gretchen Cole says:

    Hi Denise, I know how much you cherish Jaxson. I am grateful he is progressing and has future treatments coming soon. Keep up the good grandmother vibes. I know that is so special to Jax.

    Unfortunately children will be and are cruel. It will be important to teach Jax to handle these times like the champ he is. Hugs for all…


    Hi Gretchen, thank you for taking the time to comment. I appreciate it.
    denise

  32. Susan Dimock says:

    Denise, Love for your grandson sure shines through! What a cutie and a champ he is! Thank you for sharing this precious story. I know he must be on your mind and in your heart all of the time!


    Thank you so much Susan, I appreciate your kind words.
    denise

  33. John Zimmerman says:

    This is amazing news. Wishing Jaxson continued success in everything he does. Denise, feel free to brag all you want we are here for you.


    Hi John, thank you so much, it sure feels good to brag about him!
    denise

  34. Jean says:

    Denise,

    I am so happy to hear about Jaxson’s progress! I think about your family every time I get one of you emails. Prayers that things will continue to go well for him!

    Hi Jean, thank you very much for your continued support and kind words.
    denise

  35. Denise,
    Thanks for sharing his amazing progress. Stem cell therapy is an excellent option. Regarding your concerns that children can be cruel, it’s less likely today because our society is learning to tolerate differences, and children are learning this faster than the older generations. Sesame Street and teacher education have really helped in this area. Thoughts and prayers always for Jaxson, you and your family!


    Hi Debbie, thank you for sharing your thoughts. My fingers are crossed about the stem cell therapy. I know that things are changing for the better and it is about time…
    denise

  36. Peggy Richter says:

    What a beautiful child and inspiring story! You’re lucky to have such a special person in your life and he is so very lucky to have such a wonderful grandma in his life. Good luck with the therapy. I will look forward to hearing how it goes. All body parts are crossed hoping it goes well!

    Thank you so much Peggy! I appreciate it greatly!
    denise

  37. Eloise Carson says:

    With a smile like his, I think he will be well accepted by his classmates, despite his physical limitations. As they get to know him, he will be a good example to all of them for their future years in not viewing people from their outside appearance but by their inner being. He’s lucky to have so much support. With love, Eloise

    Hi Eloise, thank you so much, it means a lot to hear such positive comments.
    denise

  38. Lesliediana says:

    What a wonderful update. Thank you for taking the time to let us know how he is doing. His smile is so infectious and is a lesson for us all. He remains on my prayer list.

    Hi Lesliediana, Thank you again for your continued support and well wishes!
    hugs denise

  39. Edith Levy says:

    Denise thanks of the update. I’m thrilled to hear how well Jaxson’s doing. Sleepy eyes or not Jaxson is a very handsome little boy and he’s lucky to have such a great family supporting him.

    Thanks so much Edith, I truly appreciate your support.
    denise

  40. Lynn Ellwein says:

    OUTSTANDING…Jaxson’s smile is simply contagious!! Thank you for sharing…

    Thank you so much Lynn!!
    denise

Leave a Reply


*

Content Protected Using Blog Protector By: PcDrome.