Julien’s post 10/31

Hi everyone!

I have missed you since my last post! I have been keeping mommy and daddy very busy for the last couple of weeks between doctor’s appointments, physical therapy and my new excessive drooling habit. Last week was a busy week. I went to Children’s Healthcare of Atlanta (CHOA) and had something called a “swallow study.” Sometimes I still cough and choke while I’m nursing or bottle feeding so my parents wanted to make sure that things were working properly. When we arrived at CHOA, they put us in this room with a funny looking chair and a HUGE x-ray machine. They put a little barium inside my bottle and watched the liquid go down my throat as mommy was bottle feeding me. The test only took a few minutes and the results were given right away……..everything with my swallowing is perfect and very strong!!!! As a result, I moved up from using a “premie” nipple on my bottle to a “level 1.” I feel like such a big boy now ….and not to mention it takes less time to feed me since the nipple opening is bigger. Win/Win!!

I also had another EEG at the neurologist last week. I’m getting pretty good at these by now……they put this gooey stuff in my hair and stick these little patches of fabric all over my head. Apparently I’m supposed to take a nap and/or lay very still for a whole hour while they do it…..do you know how hard that is for a mover and shaker like me??? I was told I was a good boy and the nurse was able to get a perfect reading. Mommy tried asking her how the results looked (knowing darn well that she wasn’t going to crack!) to no avail. We had to wait a whole week for the results and……….(drumroll please!)…..for the 1st time since I was born my EEG was NORMAL!!!!!!! When the nurse called to tell us the results mommy started crying tears of joy and daddy was SO happy. All my other EEG’s showed “spikes” and abnormal brainwaves and this was my first EEG post “stem cell therapy” and it is perfectly normal now!!!! We will never know if it was the stem cell procedure or if it was going to happen anyway…..either way, mommy and daddy are SO relieved and extremely grateful. This means that I can be weaned off the Phenobarbital  which is the best part! They instructed my parents to cut the dose in 1/2 for 2 weeks and then discontinue it altogether and I should be good to go since I was on a low, “therapeutic” dose to start with. This calls for an extra celebration, besides just Halloween!!! Too bad I’m too young to do a toast, I feel like I need it along with my parents. This has been a really rough 3 months of life but every day I continue to get stronger and stronger. I have a new physical therapist that comes to our house every week and she thinks my muscle tone is getting better every week as well. I have a lot to do in this world and I am ready to get busy!!!

Ciao!

King Julien

 

8 Comments

  1. Mary Murphy on October 31, 2018 at 9:59 pm

    Fantastic update!!!

  2. Mary Wright on October 31, 2018 at 10:45 pm

    Hello sweet Julien! I am so happy to hear about all the good things happening in your life. I am so happy for your Mommy and Daddy as well. God is good and I would have to say all the prayers that are being said for you are certainly helping you grow stronger with each passing day. I have a little grand daughter that is just 6 months old and I can feel in my heart how hard and difficult this has been. Things are looking up, so you keep up the good work sweet buddy and keep us all posted. Hugs to all of you.

  3. Ginger Lewis on November 1, 2018 at 9:36 am

    I’ve noticed in pictures his 1 hand appears so much more relaxed. You have to be so excited. Just keep giving him lots of hugs and kisses. Glad for the update.

  4. Melissa Mednick on November 1, 2018 at 11:19 am

    SOOOOO happy to hear about this progress! BIG HUGS!! xo

  5. Melissa Mednick on November 1, 2018 at 11:21 am

    Yippee! Hurray! Happy day! This is excellent news! xoxo

  6. Cheryl Mastrovito on November 1, 2018 at 1:02 pm

    Great news!! You must be so relieved. And he’s so handsome!

  7. Page & Dave McAleese on November 1, 2018 at 6:25 pm

    Love reading about your amazing continued progress. So glad you will be able to stop taking the Phenob soon. Keep up the good work handsome little dude – you’ve got this!

  8. Monari Silvia on November 1, 2018 at 7:22 pm

    So happy to hear all the good news.!!!
    Keep up !!!
    Hugs
    Silvia

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