Recharging the batteries

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It has been a really intense past 6 weeks since Jack’s shunt revision, we have watched and waited for Jack to feel better but instead noticed subtle to not so subtle signs of what would appear to be a faulty shunt. We tried to vacation which ended with a visit to the hospital to adjust the shunt valve. We have had to postpone chemo to attack antibodies, missed doctors appointments, missed more school and have spent countless hours trying to figure out what is going on. All along I was praying we would soon have some time to recharge our batteries. Even God took a day to rest, right?
As time passed the symptoms worsened from headaches, nausea, dizziness to lack of appetite. So once again we visited the ED pleading the need to have our Jack back. However with minor clinical presentation at the time and a normal MRI, he presents as okay. However the MPS family knows how unique MPS patients are and how our children sometimes present minor but there is something major. After many conversations, the same conversation for the 4th time, the team agreed to explore the shunt. Side note: I would love to find a neurosurgeon who was interested in MPS who would study and understand the disease and its neuro effects so that we parents (and adults w/ disease) wouldn’t have to put so much energy into this area. Our kiddos are so unique and often break all the typical hydrocephalus rules yet its never fully understood by the experts. If you know any neurosurgeons to recruit please let me know, I’m adding this to my “to do” list.

So, Jack had surgery yesterday morning. There was no glaring issues with the shunt but the neurosurgeon replaced it and sent it off to be assessed. Now we watch him. Today he woke up in a good mood and hungry. He ate more food this morning then he has in the past 2 week. I say good sign! I say please send us home soon! I’m ready to recharge my batteries! And most definitely ready to have Jack back!

*A very important day is coming up, May 15th, MPS Awareness Day. Please join us on this day by wearing the color purple and sharing Jacks story. Please share Jacks website Here’s Jack The more awareness the more opportunity for interest, the more interest, the more likelihood we can find doctors and scientists to help find a cure.

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8 thoughts on “Recharging the batteries

  1. Jack is a hard core fighter!!!! Jamie you must have a hidden super hero cape! Prayers for healing and rest and relaxation.
    Xo,
    Liz

  2. Maybe we need to get your new Neurosurgeon if you like her and my Neurosurgeon since one trained the other to team up and be the “go-to” people for MPS pts? I always think Dr.Bragg is interested but she is also fairly new so I think some pts prefer older specialists (totally never understood that, if you ask me they are far less jaded at younger-ish ages!) and “if they’ve never heard of the dr in the MPS community” from one of the “experts” some will never go else-where which is also a true shame bc clearly some pts are getting crap care!

  3. Yes, even God needs a break sometimes and so do you. I hope you get one really soon…all of you. You’re little guy must be so very brave and yet, so sick of the never ending hospital visits and sickness. I think of you so often and hope for the best. Yesterday was my 2 month old’s worst colic day and I must have cried for 2 hours out of frustration. It was the video you posted that put it in perspective for me and I awoke today thinking how very lucky I am to only be dealing with colic knowing that this will end soon and I will have a healthy baby. I know that, based on your posts, you would give anything and everything to be able to say the same. I promise to remember this every day. I really hope Jack continues to feel better. xoxoxoxo

  4. Jamie I am so glad to hear that Jack’s GAGs are ‘moving in the right direction’. And injust wanted to say I am so appreciative of this blog. It helps us so much. Happy Mother’s Day to one of my very favorites :). And the same to YOUR mom. Xoxox

  5. Hi Jamie. I just spent my evening reading about your beautiful boy. What an amazing child you have and what a wonder woman mom he has! You and I have met a handful of times over the years but I had no idea this is your journey. I will keep your son, the doctors, JNJ, and your family in my thoughts and prayers. I shared his entry in a private FB message with my friend in MO whose husband is a neurosurgeon……because your plea makes so much sense. I will be wearing purple tomorrow in honor of Jack. I will be following Jack’s blog and helping anyway I can. God bless!!

  6. Jamie! I have a mantra—WWJD? This mantra is not the typical Christian youth group mantra found on a bracelet. An acronym for “what would Jesus do?” In my life I literally ask myself “what would Jamie do ?” I have been meeting with the SpEd team at Courtie’s school advocating advocating advocating–that’s what Jamie would do! I left my 3 boys with a sitter (for the first time in over 6 months). The boys were awful–Courtie is dealing with a transition into summer. I’m ready to give up and never find “me” again. But that is NOT what Jamie would do!!!!! You are such a beacon of strength. I read your stories about your sweet Jack and my heart is heavy with what you deal with on a day-to-day basis. What child deserves this?! But, I also am inspired by your strength and perseverance. You are a great mom and a great role model! Thank you for the continued support you didn’t even know you were giving me! Now…I’m staring at a bottle of good red wine. What would Jamie do?! 😉 Cheers to you and your family!!

    My thoughts are with you guys more than you know. Xoxo
    Sarah Parks

    • Ah thanks Sarah. So good to hear from you. And please let me know what I can do to support you from afar. I’m good at conference calls with schools. 🙂 anything, really! Kisses to Courtie and the rest of your boys!
      Best,
      Jamie
      PS New bracelet – You Just Do It!

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