My Sweet Carsyn

Tuesday he had his Occupational Therapy appointment. It went pretty well. I will call his Occupational Therapist Jane {for the sake of privacy}. Jane got here at almost 3:30. He was ready for his nap so he was a little fussy. First thing she wanted to see how he was doing compared to the last time she was here for his evaluation. She put him on his back, belly, sitting up and gave him some toys. She also had this ribbon and crinkle paper on hair scrunchies to have him grab. Jane said that those are a lot easier for him to grasp. She did notice that he was able to grasp with his right hand better then his left. I also told her that when he was sitting up or standing he kind of leans to the left side. She said that side may be weaker.

After playing with the toys she wanted me to put him in his bumbo, but he just kept straightening his legs and arching his back. She is going to bring a special chair for him. She is going to lend that to me and also lend me some toys that will help him. So far I love Jane and the program he is in. After his bumbo she showed me some more ways to get him to react and grab toys.

The Physical Therapist Tammy {again changed her name} came today to do her part of the evaluation. First she was checking some of the things that should be gone after 6 months of age. For those he did great. The reflexes that he was suppose to develop are not present. She flew him towards the floor and he was suppose to put his arms out. He also does not try to catch himself with his hands at all when in a sitting position.

Tammy goes on to talk about how his brain is not communicating with his muscles. I kept pushing and asking questions. I guess I was still thinking that his hypertonicity could work itself out. I said so can we just do some stretching and so forth and he will be good to go? She said not exactly, that his brain is injured. She said that I should definitely get the MRI and that all of the cases she has worked like this has been concluded as Cerebral Palsy. Talk about heart shattering news. We all know that I was thinking it was this, but I was still hoping and praying that it was caused by me holding him too much and that he just need to stretch out.

She said to definitely work on floor time and that he may have to cry some. I was asking her about that because right now, if I leave him for one second he starts screaming. Of course he is upset because he is frustrated that his body isn’t doing what he wants it to do. I understand that but I was getting to my wits inn having to hold him or be with him 100% of the time unless he was sleeping. Now I just know that I need to get over my self and do as much with him as possible. Thanks again for all your thoughts, support and prayers. He goes March 14th for his MRI. So if you can pray that will go smoothly. Thanks!

I wrote this post earlier when I was really emotional and upset. I am feeling a little bit better now after venting and having support from some awesome bloggy friends. Thanks girls. I know I should be thankful that he is here and happy. His happiness is all that matters to me and if that means a lifetime of therapies and taking care of him I am willing. I love him more then anything and will do whatever it takes.

Comments

  1. says

    thinking of you often sarah.. i cant imagine how hard this is. Hes so blessed to have a mother like you tho! praying for your sweet family.

  2. Mama P says

    I will be praying for Carsyn, and for you :), I understand what you are going through, is there a chance that it could still be from holding him? I sure hope so, but even if it’s not, I know you are a strong mama, <3, If you ever need anything, I am always here.

  3. says

    Oh Sarah! That must have been so hard to hear, even though you were suspecting it. I will be praying for you and your family. You were meant to be Carsyn’s mom and will do an awesome job doing whatever it is he will need throughout the years. Hugs!

  4. Sarah P. says

    Sarah, I’m so sorry! I am thinking of you and your family while you’re going through all of this. Hugs.

  5. says

    I continue to send lots and lots of good thoughts for you guys. He’s such a sweet little guy and no matter what the diagnosis, that won’t change. We’re here for you, Sarah, whenever you need to vent, complain, curse, or cry!!

  6. marcip says

    I’m sorry ya’ll are having to go through this and if venting helps then by all means go for it! You are in our thoughts and prayers. Good luck with the MRI. Regardless of his illness he is just the cutest sweetest baby and he has awesome parents that unconditionally love him, support him and take care of him. He is so lucky to have ya’ll.

  7. says

    Carsyn is such a lucky guy to have a family who cares so much for him and is providing him treatment! Sending thoughts and prayers for an MRI that provides answers and a plan! Hang in there – and vent all you need! That’s what this community is here for!

  8. Kathy Lombard says

    Sarah…this is Wendi’s mil…I just wanted to write and say Carsyn will be in my thoughts and prayers…he’s a beautiful little boy and with the love he is shown by all that know you, Kenny and him you will get through this.

  9. says

    Little Carsyn is certainly in my prayers and you are also in my prayers. You have more love and support around you than you can probably absorb, so lean on those who love you and you will endure. Carsyn is in your arms because God knows you are the right Mommy to take care of him.

  10. Reading Allowed says

    Oh sweetie, I am so sorry you are going through this. Keeping you guys in my thoughts. Thanks for keeping us posted.

  11. says

    Sweet, sweet little guy. Sorry things are tough right now. YOU need to go easier on yourself and let yourself work through the emotions of dealing with all of this. It is a lot to take in and I’m going to keep bugging you to be nicer to yourself until you do :)

  12. says

    Your post brought me to tears. You can vent anytime. There is no doubt that you love and cherish Carsyn and will do anything for him. I pray that he improves in therapy and the MRI gives you then answers you need.

  13. says

    Aw the sweet little guy…praying for you both. Hope the mri comes back with answers, and you are able to get him the help he needs. Im sure its not easy for you or him, but I hope that it gets easier, and he makes the progress you are hoping for!!

  14. says

    oh sarah, i am hoping & praying for you that the mri will go well & you will get some answers soon. i will check back daily & will read all the venting you need to write!!

  15. says

    Vent all you want. You have every right to be emotional. He is so adorable. I really hope all goes well with the MRI and you are able to get some answers.
    Keeping you both in my thoughts.

  16. says

    Sarah, Praying for you and for Carsyn. I’m so sorry you’re having to go through this, I think not knowing is probably the worst. xxoo

  17. says

    We will be praying for you guys!! And hoping the MRI gives you more answers, knowing that each new piece can help Carsyn.

    Your heart is amazing… it’s the mother’s heart. That loves and devotes herself to caring for her children through whatever storms life come…. specially when they are hard.

    Thank you for sharing… I know better how to pray!!

  18. Chari says

    I’m sorry Sarah! I know this must be so tough to go through. I’m praying for him and for you as well!

  19. says

    Gosh….vent when you need to vent….we all need to do it sometimes. I pray that things go well with his MRI and that you’re able to see some improvement before then. I know you love him no matter what the outcome is. Stay strong! You’re a great Momma!

  20. Jason L. says

    You and Kenny are great parents and I know you guys can handle any adversity that you come across. Carsyn is such a wonderful blessing and he’s lucky to have you guys as his parents. Whatever the final outcomes of the test are, I know he will be loved and cherished. You are lucky to have him and he’s blessed to have you. These challenges are what makes life special. Wendi and I will keep you in our prayers but I know you guys will be fine. It’s obvious how much love your family shares and that alone will get you through any hard times that arise. Trust me.

  21. Andie says

    I know there is nothing I can say that will make you feel better because I am in the same boat. Trust me, I know. It’s heart-wrenching and I feel for you and baby Carsyn so, so much. I will keep you guys in my thoughts and prayers, and if you need anything at all, I’m here.

    (((hugs)))

  22. Erin says

    Sarah, I wish I could give you the biggest hug! It’s perfectly ok to be upset and emotional. I know what it’s like to be delivered the possibility of devastating news. It’s because we love our children so much that it hurts so much. You are doing the absolute best for Carsyn right now and once you know more you can go from there. I’m praying for you and know you are in my thoughts tonight. If you ever need to talk or vent, I’m here.

  23. says

    Well you know that you’ll continue to be in my prayers – I think writing your thoughts helped you better process the situation. I just hope it all works out…there’s got to be a plan that we just don’t understand just yet.

  24. says

    Tear poured for your baby when I read this. I will be praying that the MRI shows nothing of that! God can get you and Carsyn thru it! ((hugs)) Will be thinking and praying for you…seriously.

  25. says

    Oh I am soo sorry you are going through all this. If you ever need someone to talk to email me! He is such a sweet baby boy and it’s so hard when our babies are sick. I hope he’ll outgrow it and it wont be what they think it is. Good luck with everything. I’m thinking about you! xo