Thursday, July 12, 2012

To Anthony, With Love from your Mom!

Dear Little Buddy, You have been so strong over these past couple of weeks and I am so proud of you. All of your caring nurses have fallen in love with your sweet eyes, joyful smile and infectious giggle. Even though it has been hard on both of us to be away from Daddy, Gianna and Leo, as well as the comforts of home, I have loved being able to devote one-on-one time to you and your needs. I can't describe with words how it warms my heart that you have been constantly wanting to hold my hand or have me lay with you. We will have some time adjusting to having to share our attention again when we leave the hospital (but I know we are both so ready to go home!) In about 30 minutes time you will be going to the OR to have a procedure done that has been talked about for a couple of years now. You are going to have a feeding tube (called a PEG tube) placed in your stomach. You have always been under weight and your weight gain has been slow and difficult. You have always made such great and consistent progress and I am so proud of that (proud of you and me and Daddy as well!) The past couple of months you have been having a hard time eating enough and you often refuse much of anything at all. Since your seizures 2 weeks ago and the time we've spent in the hospital you have lost another 2 pounds, pounds you can't afford to lose. Also, at the beginning of the week you failed a swallow study that showed you are aspirating liquids, so you can only safety swallow puréed foods or thicker. You will likely be able to swallow liquids again, it will just take some time. You will still be able to eat by mouth, we will just be able to put any extra calories you need through the tube. I also have big plans for juicing and giving you all kinds of other healthy things you would have never let me give you before! And the part you'll probably like the best: You won't have to taste all those yucky medicines we have to give you anymore...they can all just go right in your tummy through the tube! This new journey we are embarking on will be such a positive for you. We will no longer need to worry that you are getting the nutrition you need or gaining the weight you should. We will be able to confidently stick to a dairy-free diet that has evidence to improve your syndrome. You will be stronger and healthier!! Mealtime wont be stressful, you can enjoy what you eat, and form a good and healthy relationship with food. It will be a bit of a lifestyle change for us all but like everything else, we will adapt and eventually thrive! We will do whatever it takes to do the right thing for and by you and together we can overcome anything.   I love you my sweet child. I'm so glad you're mine and I'm so proud to be your mom!

11 comments:

  1. You are such a strong Mom and a great role modle for mothers evrywhere. Your kids are very lucky to have both of you. Stay Strong Jr. The Camire and Harneys are thinking of you!! Love Amy

    ReplyDelete
  2. Thinking of you guys. Such a brave little guy and amazing mom! Sending good thoughts your way. Love, Kim

    ReplyDelete
  3. Sending my thoughts and love your way! Give Anthony a kiss for me, Eric and the kids! We love you all! Let me know if you need me. Xoxoxoxo

    ReplyDelete
  4. You are an amazing family! Thank you for sharing! Anthony is in such wonderful hands!
    The Farmer Family

    ReplyDelete
  5. Thinking of you guys! xo Carrie

    ReplyDelete
  6. Kristin your strength is so inspiring to me! Your children and husband are so blessed to have you in their lives! Please know we pray for Anthony every night!!! HUGS!!!

    ReplyDelete
  7. All of your Just Dance family is cheering you on Anthony! You are such an amazing little man! Xoxo

    ReplyDelete
  8. Thank you Anthony Jr. for reminding us that we have so much to smile about...you are one brave little munchkin...you are teaching us all that we too can be brave...prayers and hugs to you little one...Cousin Brenda xoxo

    ReplyDelete
  9. Thinking of you and Anthony. Your attitude is really wonderful and inspiring. I love how you have found the bright side and embraced this positive change. I am also happy for you that mealtime will now be an easier and less stressful experience for both of you. I look forward to seeing you both in the future. ~Kellee

    ReplyDelete
  10. Our thoughts and prayers are with you and the whole family on this journey. Karl and Audrey.

    ReplyDelete
  11. Thinking of you often. Anthony is such a precious little guy and is so lucky to be a part of such a wonderful family. I miss you guys!!
    Deidra

    ReplyDelete