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Sarah Halstead

You are here: Home | Family | An Update On Sweet Carsyn

August 1, 2011 By Sarah Halstead

An Update On Sweet Carsyn

Filed Under: Family, Special Needs Tagged With: cerebral palsy, Holoprosencephaly

It feels like it has been forever since I have done a Carsyn update. So here is the run down.

He is still in Physical Therapy once a week and Occupational Therapy once a week. They are still waiting on Speech Therapy because he is making some progress in this area right now.

Insurance finally approved the stroller and stander. We should be getting those items in the next month. We will be able to give his loaner stander back to his Early Intervention place. The stroller is basically like a wheelchair. It gives him the extra support he needs for long rides. The stander gives him the time he needs to practice weight bearing. This will help him grow. Since normal kids his age are standing and walking. Once he starts trying to take steps they will move him up to a walker.

Both his PT and OT are so amazed by his progress. To me it seems like he is moving so slow and it takes him forever to learn something new, but they think he is doing great. I love hearing that.

He is still so happy all the time. He brings a smile to anyone’s face that he meets. I love it.

According to his Neurologist, this is a seizure. {My Opinion, I know I am not a doctor, is he had something itchy/stuck in the back of his throat. We were eating breakfast and he started doing that. It lasted for a minute or so. Then I gave him some drink and he was fine} He wants to do another EEG, but if he is not having a seizure at the time of the EEG it will just show up normal. If it does show up normal, then he just wants us to wait and see if we see another seizure. It just frustrates me. How do they expect to accurately know if he is having seizures without doing a test longer then an hour. It has been two weeks and I have not seen any signs of seizures. He said the type of seizure he thought it was, should be happening very frequently. It just seems like he is out to make money. I think we will be looking for a new neurologist soon.

Anyways if you can just keep him, Dustyn, Kenny and I in your prayers. We are just trying to take everything one day at a time. It is difficult though.

{Taken with my iPhone while driving down my driveway. ha ha.}

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Comments

  1. Ray says

    August 16, 2011 at 5:17 pm

    Love the last photo and the verse. Thanks for linking up.
  2. Erin says

    August 10, 2011 at 3:40 pm

    So wonderful to hear that he is doing so well in therapy! I know what you mean about not seeing progress very fast. It seemed at least with Lucas it would come in waves. We wouldn't see anything for a while then all of a sudden we would see a lot. It must be such a relief to have your insurance approve the equipment that he needs! And as far as the "seizure" goes, I have no advice but I think a second opinion is a good idea especially if you don't feel comfortable with your doctor.
  3. Jenn says

    August 8, 2011 at 3:26 am

    that is a fabulous verse to cling to during trials this hard and long!! ;) it is one of my favs.... and I love that God tells us with Thanksgiving... we can be Thankful ... for many of those hard things... b/c they bring blessings with them! and journeys to make us strong... and God will use your story with so many others Sarah!! ;) I know every child is different... Sammy had a "seizure" ... just one... and we waited and never saw another... ;) and most neurologists are the same... very unpleasant bedside manners... they are not my favorite docs to work with... grrr... PT and OT on the other hand... are huge blessings!! ;) keeping you in my thoughts and prayers! even when I don't visit... you cross my mind often and I wonder! ;) Keep enjoying those weekends and lovin those babies! ;)
    • NapTime MomTog says

      August 8, 2011 at 3:37 am

      Thanks so much Jenn. Thanks for your sweet comment and encouragement.
  4. Misty says

    August 5, 2011 at 8:40 pm

    AAW! My little man. Praying for you all. So happy to hear he is making progress.
    • NapTime MomTog says

      August 7, 2011 at 10:14 am

      Thanks misty.
  5. Tiffany Rhodes says

    August 5, 2011 at 1:41 pm

    My friend's daughter (I was a care attendant for her) has a seizure disorder. If you want I can give you her info and she can help you find another doctor and give you her undoctor/expert mother opinion on the video. I totally forgot about her when you asked me the other day!
  6. allison says

    August 4, 2011 at 7:39 am

    congrats on the equipment approval from the insurance. Sometimes that can be the greatest frustration, on top of an already difficult situation. Thanks for sharing your story and keeping us posted - we'll be keeping you in our prayers!
    • NapTime MomTog says

      August 4, 2011 at 1:03 pm

      Thanks. Thankfully I had a patient advocate which was a big help.
  7. Karli says

    August 3, 2011 at 8:18 pm

    that was "give" you more than you can handle... oops! {sending you an e-hug!}
    • NapTime MomTog says

      August 4, 2011 at 3:38 pm

      Thanks so much karli.
  8. Karli says

    August 3, 2011 at 8:18 pm

    Oh good! I was hoping to get a Carsyn update! It sounds like the therapists are very pleased with his progress - that's wonderful! And I can also understand the heartbreak when you think things aren't coming along fast enough. Keep your amazing attitude and strong faith in God's promise to never get you more than you can handle. I will be praying for your family right now. Love and hugs!! XOXO
  9. Kimberly says

    August 3, 2011 at 3:10 pm

    So good to hear that he is making progress! I will keep you all in my prayers!
    • NapTime MomTog says

      August 5, 2011 at 9:26 am

      Thanks Kimberly.
  10. Sarah P. says

    August 3, 2011 at 2:35 pm

    Sarah, I'm glad to hear that Carsyn is doing well and making progress. It couldn't hurt to find a new neuro if you're not happy. You need to fully trust and be happy with those that are caring for him through this. I can't even imagine what you're going through, you are an amazingly strong woman and don't ever forget it. I'm thinking of you all and hoping for more great news.
    • NapTime MomTog says

      August 5, 2011 at 9:26 am

      Thanks so much Sarah.
  11. Artistically Amy says

    August 3, 2011 at 2:19 pm

    Glad to hear that he's doing well in PT and OT! I can understand the frustration and feelings that he's progressing slowly (although only from a sibling's POV, not a parent's). My younger brother didn't walk until he was 3 or 4. It's so great that your insurance is going to cover the stroller and stander! I know my mom always had a hell of a time getting them to cover equipment. Your little family will definitely be in my prayers!
    • NapTime MomTog says

      August 5, 2011 at 9:25 am

      Thank you Amy.
  12. deb says

    August 3, 2011 at 10:52 am

    I'm glad to hear he is making progress and I love the verse you chose for the beautiful sunset photo. You are really making the most of your iPhone. I will definitely be praying for you and your family.
    • NapTime MomTog says

      August 5, 2011 at 9:25 am

      Thanks Deb.
  13. Allie says

    August 3, 2011 at 10:21 am

    He is so precious! I'm with you on the EEG stuff. We cancelled the second one. Why are good pediatric neurologists so hard to find? Sigh. Take care sweetie. Hugs.
    • NapTime MomTog says

      August 5, 2011 at 9:25 am

      Thank you Allie. They are hard to find...
  14. Janell H says

    August 3, 2011 at 3:12 am

    Praying for you and your family!
    • NapTime MomTog says

      August 5, 2011 at 9:24 am

      Thank you Janell.
  15. Melissa says

    August 3, 2011 at 1:15 am

    what a sweet little boy! He's getting so much bigger!
    • NapTime MomTog says

      August 5, 2011 at 9:24 am

      Thanks Melissa.
  16. [email protected] says

    August 2, 2011 at 11:48 pm

    oh sarah, you guys are always in my thoughts & prayers. he is such a sweet boy & is so blessed to have you as his mama.
    • NapTime MomTog says

      August 5, 2011 at 9:24 am

      Thanks Amy.
  17. Adeena says

    August 2, 2011 at 5:22 pm

    Yay for the stroller and stander! :D Glad to hear he's progressing well. :) Ethan had febrile seizures, and they were nothing like that. I don't know if it would look the same... but that didn't look like a seizure to me. Hopefully you can get a second opinion. Will keep praying for you all! :)
    • NapTime MomTog says

      August 5, 2011 at 9:24 am

      Thank you Adeena.
  18. Gina says

    August 2, 2011 at 4:33 pm

    Many prayers for you dear friend! It's so exciting to hear he is making that kind of progress!
    • NapTime MomTog says

      August 5, 2011 at 9:18 am

      Thank you Gina.
  19. Courtney says

    August 2, 2011 at 3:56 pm

    So glad to hear about the progress he is making. Presley had a febrile seizure once but it was nothing like the video you posted. If I compared Presley's to that video then in my opinion, it wasn't a seizure. However, I'm no neurologist either. Definitely have you all in my prayers!
    • NapTime MomTog says

      August 5, 2011 at 9:16 am

      Thank you Courtney. It is hard to know what is/isn't a seizure cause there are so many.
  20. chari says

    August 2, 2011 at 3:55 pm

    I'm glad he's making good progress! I'm with you about the seizure, it doesn't look like one to me.
    • NapTime MomTog says

      August 5, 2011 at 9:15 am

      Thanks Chari.
  21. Kristy Life n Reflection Photography says

    August 2, 2011 at 3:39 pm

    Love your sunset, sending a prayer for Carsyn
    • NapTime MomTog says

      August 5, 2011 at 9:15 am

      Thank you Kristy.
  22. Summer says

    August 2, 2011 at 3:35 pm

    Praying for you guys. He sure does make me smile thru pictures. What a sweetie you have.
    • NapTime MomTog says

      August 5, 2011 at 9:15 am

      Thanks so much Summer. :)
  23. Lisa says

    August 2, 2011 at 3:11 pm

    Y'all are certainly in my prayers.
    • NapTime MomTog says

      August 5, 2011 at 9:15 am

      Thank you Lisa.
  24. Robin says

    August 2, 2011 at 1:36 pm

    First of all, congrats on the insurance approval and for Carsyn's progress. Thanks so much for the update... it seems that if the OT and PT think that he's progressing (and they are probably a little bit more objective) then that's a GREAT thing. As far as the seizure... you were there and you're his mom. Moms know. Period. It is a good thing he hasn't had more like it. The neurologist may just want to cover all his/her bases (people can get pretty sue happy and they want to CYA if you know what I mean). Still praying for you and I hope you had a good week off last week. :)
    • NapTime MomTog says

      August 5, 2011 at 9:15 am

      Thanks so much Robin. :)
  25. Sue Anderson says

    August 2, 2011 at 1:28 pm

    Sending prayers to you and your family. I'm glad he is making progress and hope they will figure all of this out soon. =)
    • NapTime MomTog says

      August 5, 2011 at 9:14 am

      Thanks so much Sue.
  26. Drea says

    August 2, 2011 at 1:13 pm

    Thanks for the update. It looked to me like his throat was itchy too. But Im no Dr. Praying!
    • NapTime MomTog says

      August 5, 2011 at 9:14 am

      Thank you Drea.
  27. Courtney @ The Mommy Matters says

    August 2, 2011 at 12:28 pm

    Still sending lots of prayers and hugs your way!!
    • NapTime MomTog says

      August 5, 2011 at 9:14 am

      Thanks so much Courtney.
  28. Kelly says

    August 2, 2011 at 12:11 pm

    What a sweetheart... Bless you and your little family...
    • NapTime MomTog says

      August 5, 2011 at 9:14 am

      Thanks Kelly!
  29. Pieni Lintu says

    August 2, 2011 at 12:09 pm

    Huge virtual hug for you all!!! <3
    • NapTime MomTog says

      August 5, 2011 at 9:13 am

      Thank you! :)
  30. jenn says

    August 2, 2011 at 11:50 am

    Use that mama intuition and get a second opinion... I'm glad to hear he's making progress.
    • NapTime MomTog says

      August 5, 2011 at 9:13 am

      Thanks so much Jenn.
  31. Tara says

    August 2, 2011 at 11:07 am

    Glad to hear they think he is doing well and making progress, such a happy boy. You are all in my thoughts and prayers.
    • NapTime MomTog says

      August 5, 2011 at 9:13 am

      Thank you Tara.
  32. Secret Mom Thoughts says

    August 2, 2011 at 10:45 am

    I will keep you and the family in my prayers. Glad to hear he is making progress.
    • NapTime MomTog says

      August 5, 2011 at 9:12 am

      Thank you!
  33. Ashley Sisk says

    August 2, 2011 at 10:28 am

    You guys continue to be in my prayers. I'm so glad to hear that he's making progress though! Love the second shot/scripture.
  34. Kaitlyn says

    August 2, 2011 at 9:44 am

    That's good that he's making progress! You'll be in my thoughts and prayers. <3 In our sea of love
    • NapTime MomTog says

      August 2, 2011 at 9:56 am

      Thank you Kaitlyn.
  35. Naomi says

    August 2, 2011 at 9:22 am

    So glad he is making progress, Ill continue prayers!
    • NapTime MomTog says

      August 2, 2011 at 9:55 am

      Thank you Naomi.
  36. emily says

    August 2, 2011 at 8:52 am

    What a doll. It's hard to see improvement when you are doing things with him constantly everyday, though like Amber says, if you look through some of the photos, you can definitely see growth and stability. A second opinion sounds in order, too, since the answer he gave wasn't really an answer, especially since what he thought was happening isn't what is happening. Prayers for your family. When the going gets tough...the tough get goin'! :)
    • NapTime MomTog says

      August 2, 2011 at 9:20 am

      Thanks so much Emily.
  37. Katie Lloyd says

    August 2, 2011 at 8:50 am

    I can't think of a better verse for you! Y'all be in my prayers!!
    • NapTime MomTog says

      August 2, 2011 at 9:19 am

      Thank you Katie.
  38. Amber says

    August 2, 2011 at 8:04 am

    Hmmm.....a second opinion is often a great idea, especially in a situation such as Carsyn's. YAY!!! I am glad you will get your stroller and stander soon. I obviously can't see much in a photo, but it def. seems like he has better head and core control in sitting. That is excellent progress! YAY, for good and encouraging PT's and OT's. I pray for continued perseverance for you and Kenny.
    • NapTime MomTog says

      August 2, 2011 at 9:19 am

      Thanks so much Amber.
  39. Suzette Mahoney says

    August 2, 2011 at 6:38 am

    Praying! Love the quote!
    • NapTime MomTog says

      August 2, 2011 at 9:19 am

      Thanks Suzette.
  40. [email protected] says

    August 2, 2011 at 2:50 am

    I'll be praying for you all Sarah.
    • NapTime MomTog says

      August 2, 2011 at 9:17 am

      Thank you Rosie.
  41. Jess says

    August 2, 2011 at 1:00 am

    I'll be praying for your dear family! The verse goes perfectly with that shot and it's such a beautiful promise! :)
    • NapTime MomTog says

      August 2, 2011 at 9:17 am

      Thanks so much Jess.

Welcome

I'm Sarah and I am the writer behind this blog. I love sharing recipes, DIY projects, photos and about my everyday life. I married my high school sweetheart Kenny. We have three boys and one baby girl - Dustyn, Carsyn, Prestyn, and Annelyn. Thanks for stopping by, can't wait to get to know you more. Read More…

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