Christmas At Children’s

Well, it’s not the way that we imagined it, but we are trying to make the best of what is in front of us. We have struggled a bit trying to balance the needs of both Ezra and Liam, as we haven’t found the ‘create duplicates of yourself’ software yet. Yesterday, Saba and Savta (Hebrew for Grandfather and Grandmother) worked really hard at preparing a delicious meal for us to share. They brought the food, along with a lot of stuff to make the cafeteria seem more homely and we enjoyed a Christmas Eve meal together. We then traveled home and opened a few gifts last night with Ezra before putting him to bed.

Ahna and I came back to the hospital after Ezra was sleeping and spent the night here. We woke super early and went back home so we could be there when Ezra woke up…and to see what Santa brought. Ezra had left a note along with cookies and milk for Santa, and sure enough, all that was left were some crumbs and a return note. We enjoyed opening gifts this morning before we again returned to the hospital.

This evening we are planning another meal in the cafeteria before Ezra will have the opportunity to meet Liam for the first time. They are making special exemptions to the no-under-12 rule in the NICU for Christmas. Even though he will be allowed in the room for 2 hours, we are having a hard time imagining anything more than 15 minutes due to his propensity to want to hit buttons – and if there is any place that it isn’t good to randomly hit buttons, it’s here.

Medically speaking, Liam continues to have seizures – which at the exact moment might/might not be controlled. He has gone down just a hair on his blood pressure meds, but otherwise things aren’t all that different from the last update. We continue to have chances to hold him – which takes three nurses to get him in and out of bed. The staff here is simply amazing and are willing to bend over backwards at a moments notice to allow it to happen.

Again, I tell you all that there is no way that we could ever return the love and support that you are giving to us. Keep the correspondence coming…it’s good for us. Love to you all, and Merry Christmas (or happy Saturday to the rest of you).

 

Comments

  1. Nice! I like the choice of Dr.Seuss.
    Take care and love ya all.

  2. I am in awe of the strength you have, and continue to show throughout this difficult time. My thoughts never leave you.

  3. Meg Jacques says:

    God bless you all through this trying time! My thoughts and prayers are with you all! Sending much love and healing strength…
    Meg, Phil and Riley

  4. O and Ahna….I’m so sorry to hear the news…I can only imagine what you both and your family are going through. Remain strong and resilient and remain positive…don’t forget to take some time for yourselves too….just a break once in awhile will refresh you both which it sounds like you are able to do.

    Lindsey and Peyton loves the pictures of Liam and Ezra!!

    Stay strong Brother….let me know if there anything at all we can do on this end…If you need anything done at the house please ask…really….!!

    Peace and love to you guys!!
    Matt, Lindsey and Peyton

  5. Wow, fabulous pictures of non traditional holiday. Your boys are beautiful! I agree with my husband, you can’t go wrong with Dr. Seuss! Sending you cyber hugs and many blessings!

  6. You are all in our thoughts and prayers. You have shown amazing strength and courage during this time. Your boys are unbelievably blessed to have you as parents. Warmest wishes and a Merry Christmas!
    Kim, Tanner, Katie & Tyson Topkoff

  7. Hello! You dont know me, but i saw your story on Tori’s blog, who i know from our time at Metro Care Ring ages ago. Anyway i wanted to reach out, i have a daughter with severe anoxic brain damage, and we too have spent a ton of time at TCH. It sounds like Liam is doing great, and when ou are ready, I will help you in any way I can with resources or other things. You’d be surprised what these kids can do, and every sinle kid is different, regardlessof what the EEG and MRI’s show! We also have other kids, so we know what its like to balamce very small children and hospital stays! Not easy. Anyway, thinking of youall!

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