Officially single digits until the big day....CHRISTMAS!! We are so so very excited and thankful to be able to spend Christmas at home and AS A FAMILY OF FOUR! Livy is doing great...so great that the medical team at the U thinks I am losing my mind, I mean I may be, but it's not completely lost quite yet. She woke up around 4am on Friday morning with A LOT of congestion/drainage from her cute little button nose. If you have little kids & you don't have a nose Frieda..GET ONE!! It has been our best friend as she got her first cold. I instantly started crying and prayed as I was so scared. The Dr's have been telling us a simple cold to her would mean that the cytokine storm would start again and would be 10x worse this time around as it would take more meds to calm her immune system down again. She felt warm to me, although each of the 4 thermometers reassured me that she was rocking a 97.4 temp every 15 minutes for the next 6 hours! I called right away at 8 am and continued to call until I got a call back with advice to keep a close eye on her for any other changes and to take her in for labs on Saturday morning, so I did and in we went. I got a call later Saturday morning saying that her labs were GREAT, even better than what they were on Tuesday! Her Ferritin (HLH indicator) was even lower at 106!! Little Livy caught a cold, but her amazing, strong, little body had it under control...a blessing in disguise!
We also got the news that Ameliah, Oliver and I are 50% matches regarding the bone marrow for Livy, therefore they went out to the registry to see what was out there. Alivia Rae has 10 POSSIBLE DONORS THAT MATCH AT 99%! I was told by the nurse, that this NEVER happens. Possibly 1 or 2 but most patients wait 3-6 months to find ONE match! A COMPLETE BLESSING IN DISGUISE! I'd like you to think about this for a second. This is possible for her to have 10 matches because there are so many people that life threatening diseases, have affected. When you're affected by something like this you naturally don't want anyone to ever have to go through what you have so you raise awareness or do anything you can to contribute. I wish I could go and hug and give thanks to every single one of those 10 matches along with anyone that's on the list. It's such a selfless act of kindness that literally saves lives. They are choosing to endure some pain, a surgery, possible complications, time off work, time away from their normal routine and so much more all so Livy Rae can continue to have a year of firsts, learn all about being a kid from her amazing big sister, and bless this world with her smile that one day will turn into a grown woman that will move mountains...I am sure of it! With this being said, please consider registering to be a donor. Think about it, Research it and if it makes sense sign up! & just so everyone knows we have to wait a year post transplant until we will be able to meet the donor, but that will be a priority and a must to do item without a doubt!
Meli had her holiday program and rocked her solo part! She loved that we were all able to be there to support her as well! She got to show off Livy and was on cloud 9! Santa also came to Norway! Meli just couldn't believe it! As we left from visiting Mr. & Mrs. Claus, Meli said "oh my goodness mom that REALLY was Santa, I know his beard was REAL, because not even Livy could get it off"...haha
We got family pictures done this weekend as well, thanks to Little Love photography! I value the moments that a simple picture can capture. Those smiles and special, ever changing little girls that we've created are so so important to us! In 10 years I want to be able to look back and have these pictures show how fearless our smiles really are. Our hearts are broken, our minds are scared, but we are a family and we have each other, therefore WE WILL be okay. I plan to take pictures as much as possible throughout Livy's treatment as there have been many families with HLH survivors/angels that we've been connected with for support purposes. They've shared their stories, opinions, pics and answered many of our questions, it truly has served a purpose. I too will forever want to spread awareness and help families through this in the future. As they say "a picture is worth a thousand words".
All in all our hearts are so content. Ameliah is in full swing with her Christmas spirit and Alivia is so healthy and happy go lucky! So Oliver and I decided to have my mom watch the girls so we could have a little date night, some much needed time to just relax, breathe and enjoy each other. Meli's god parents were having an Ugly Sweater party so it seemed perfect! We got ready and headed out. I fed Livy right before leaving, thinking she would be able to last 3-4 hours until the next feeding/bedtime. Long story short we left at 8pm and were back home at 9:15pm. Livy wanted to eat, so my mom offered her a bottle of milk from my stash, but she wouldn't take a bottle to save her life....literally! Yes, it sucks in a sense...but both Oliver and I realize Livy won't be breast feeding forever! Before we know it our girls will be independent and too cool for us, so we will continue to enjoy all of our time together and be making a list of all the things we will do to keep busy!
This week we will find out when our appointment to visit Cincinnati Children's hospital will be, along with the progress with the potential donors. Livy will have labs on Wednesday as long as she continues to be healthy and we will continue to enjoy the best time of the year!
We hope you all are enjoying this time as well! Spread the Christmas spirit and smile because you deserve to....no matter what!
Sending everyone lots of love!
CeeCee
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