Today makes 31 days after the transplant. Liv had her first clinic appointment today after being released from the hospital. They said everything still looks great! Her ANC is at 2800!!
Liv has been feeling very good. After clinic today she spent some time with Peggy, one of the Riley teachers, doing some school work. She also did an interview with news channel 15 at the apartment.
Right now she is in the Kitchen making meatloaf for supper, she loves to cook! Tonight will be the first night our family has slept under the same roof in 36 nights!
God is good! Have a great weekend!
T+29 She’s out! Thank you to the Liv It Up community!!! The support from each and every one of you made this day possible!
As most of you know Olivia's journey still has a long way to go, but she has cleared a major hurdle! She has been released from the hospital today!!!
First and foremost we want to give glory to God for healing Olivia to this point and for the strength and perseverance he has given her. We ask that God continue to be with Liv over the next weeks, months and years!
We want to thank everyone who has prayed, followed, and emotionally supported Liv and our family during this time! Your support means the world to us and has made this journey so much more bearable.
We also want to thank everyone who supported us financially. The support from the community was nothing short of amazing! From the $1 donation to the $50,000 donation we will forever be grateful! There are so many people to thank that helped to make the Liv It Up campaign a success. Friends and family that helped organize and bring to life the Liv It Up campaign, things came together so fast and furious, it was a major amount of work. Friends that organized, planned and worked so hard for the Angola block party and the Sylvan Cellars event. So many more people that pulled together countless other events and fundraisers. Many of you gave so much more than money, you gave your time, you gave yourself! We could start naming so many people personally that we are forever indebted to but we know we would forget to mention someone. Know that every single person who has had anything to do with the support for Liv and the Liv It Up campaign will always have a special place in our hearts. We have been called to forever work to pay your generosity forward!
As parents when we meet the parents of other kids with a terrible illness we have an instant connection, we are all part of the same “club”. None of us asked to join this club but if the illness selects you, you’re in. We all have an understanding of the battles we face as a family. We have certainly seen through the journey with Liv there are far too many kids that have to fight the battle. The cool thing is they all fight with a smile on their face! Liv It Up has the opportunity to make things just a little bit easier for some families to fight the battle! Trust us when we say it can have a big impact!
The Liv It Up campaign has been blessed far beyond the needs of Liv thanks to your generosity! We have a committee setup to work through a process to get the extra money to other kids and families fighting chronic illnesses. Please pray that this process puts the money where God sees the best use. Liv It Up still has big things ahead, thank you for your support and we ask that you continue to support Liv It Up! We’re not done yet!!!
Prayer warriors please keep the prayers rolling, Liv still has a long journey to travel and Liv It Up has a lot of work to be done!
To everyone that is a part of the Liv It Up community, please accept our sincerest “Thank You” for the blessing you have given our family!!!
Tom, Megan, Olivia, Evelyn, Preston Stoy
The entire Stoy and Tyler Families
T+27 32 days in Hospital. Liv is so excited to be on the phone with Mom telling her that they removed her feeding tube and disconnected her iv pole this morning! Now she will need to work hard to hit the fluid goal they have set for her. 1 step closer to busting out of here!!!
Liv is doing great! She continues to eat and drink a little more each day. She is able to taste most things she tries, not back to normal taste buds but getting there. They are continuing to wean her from the pain meds. She does not have much pain but they have to take her down slowly. We are very hopeful to get out this week!!!
Another good day! ANC continues to go up! Liv had school this morning followed by physical therapy! This afternoon she had art therapy followed by a good nap. She did get sick tonight but is resting well now.
We continued our mission of finding some food that she can taste! We made a little progress but she still has not eaten a lot. It will take a little time but she is gaining. She does still like her lemonade!
Liv had another very good day! It was the first day in a long time that she woke up feeling pretty good. That was followed closely by a morning puke and short nap but the rest of the day continued to get better. She met with one of the teachers on staff at Riley to get setup for her online learning. In the afternoon she walked the halls and rode the exercise bike.
We spent part of the afternoon trying to find some type of food that she would like to eat. Her taste buds will take a long time to heal so we were looking for strong flavored foods. She did not eat much but it is a big step just to have the desire to start trying food. I think this will continue to grow over the next few days! Making big progress!
God is good!!!
Every morning we look forward to a doctor and a nurse practitioner coming by to review Liv’s health. Every morning they go over every detail from the day before, all of her lab results and plans for the day. They always take all the time we want to answer all of our questions and to make sure we are comfortable with what is going on. We are so grateful for all of the Riley staff!
This morning started out very uncomfortable again for Liv. We got some good news when the doctors talked about things that need to happen before we go home! I thought this was great news because it means Liv is improving fast. After the doctors left Liv got pretty upset because the thought of going home feeling miserable did not sound so good to her. I had to remind her that they will not send her home feeling so bad. The doctors can tell that she will be feeling better soon. We are hopeful that early next week Liv may be able to leave the hospital and move to our apartment that is nearby!
This afternoon OT (occupational therapy) came and got Liv up to walk the halls and play a game! After that she has stayed in a chair for quite awhile watching Netflix. She has been drinking some juice and even tried a bite of yogurt! The yogurt had no taste to her and she decided not to try anything else tonight. She had a very good afternoon! I expect tomorrow morning to start a little ruff again but there is no doubt she is quickly improving!!
1 of the hardest parts of this disease is the toll it takes on families. Always a hard day when part of the family goes home and part stays at the hospital. This does not only happen to the Stoy family this happens to all families!
Liv continues to heal well and the doctors are happy with what they are seeing! The unfortunate part for Liv is the days continue to get more uncomfortable. She is nauseous most of the time and throws up several times through the day. The doctors say this is pretty common for this stage. We know that better days are ahead!
God is good!!!
Olivia Update Day +16:
*ANC of 84
*Received one unit of blood this morning
*Receiving one unit of platelets tonight
*Pain in feet is getting a little better
*Now fingers hurt like feet
*Mouth and throat are better but still just taking a few sips of water a day.
*Continuing to receive nutrition through feeding tube
*Receives 1 liter of oxygen when she sleeps
*Activity for today was occupational therapy for 30 minutes, music therapy for 45 minutes, walking the halls once today, visiting with cousins
I can tell Liv is feeling a little bit better! She likes to print out a picture for each day she is in the hospital. She has not been feeling well enough to do it but this afternoon she took some time to get caught up!
(Below is the quick report I sent to Megan after the doctors rounded this morning)
Doctors think everything looks great. Pretty confident she is a day or 2 from having counts, right on schedule. Lungs sound good oxygen is from airway gunk. Morning puke is pretty normal with her age group because of swallowing all the nasty stuff while they sleep, probably will continue for quite awhile. When she heals to the point of wanting to eat it will likely be very bold foods that she doesn’t normally want. Most popular is potato chips. Dr said you would think they would want soft food but all soft food will have no flavor to them.
So much time in the hospital builds special bonds with the nurses!
Emily brought this awesome gift for Liv today! Emily is a strong fighter like Liv, they have both had some ruff roads to travel but they both have tremendous attitudes! Check out her journey on Facebook at emmystrong.