Addi had a pretty busy day today and is now sound asleep. She has four teams of doctors overseeing her care so every morning begins with lots of doctors in and out trying to formulate a plan and get to the bottom of the mystery that is Addi. There are some conflicting opinions from the doctors which makes it frustrating on top of having a different team each week (they rotate so we have a different doctor every week!) The difference of opinions from so many doctors can be a lot to take in and decipher some days. I had one doctor tell me he thinks it has nothing to do with the liver but could be her lymphatic system then I have another doctor tell me she does not think it’s the lymphatic system at all. I truly want to scream right now but I’m being patient and just pushing for answers. I’m having faith that God is in control and guiding these doctors. One doctor said they may be able to at least get us to the Ronald McDonald House so we will take that too! They know she can’t stay in this hospital forever waiting to figure out this ascites (fluid in stomach) so they hope to have a set plan by the end of the week where she can safely go to RMH or home. She will more than likely have a permanent drain put in her stomach. This will be safer and have lesser chance of it becoming infected. 

After all of the doctors rounds Addi had physical therapy which was a disaster because she is not feeling well at all so she screamed the entire time. Then she had a procedure to put her NG tube back in her nose. It was accidentally yanked out so after 5-6 attempts yesterday to put it back in, she was given Versed and sent to radiology to have it done. Took the doctor less than a minute. It was pretty impressive! 

I am completely confident that these specialists will find out what’s causing this issue and get her well. I get so many messages asking about sending her to St. Jude’s or another hospital. We are where we need to be but if we feel at any point she needs to be moved, we will definitely pursue other options. They have saved Addi’s life over and over so we have ALL faith they will do it again for her. Just because they don’t know at this moment what all her issues are, doesn’t mean they aren’t trying and we trust them. They are the best in their field so I have all faith in them and a mighty God that is guiding them daily. 

I will try and post a video later of her Versed high! She was actually happy, smiling and playing….something we haven’t seen in days so although it was because the drug made her loopy, I will take it and it was fun at the time. She’s been sleeping a lot and just feels crummy with all of this fluid built up. She’s been complaining that her teeth hurt so I decided to feel of her gums and sure enough she’s cutting her 2 year molders. Poor baby. Now even her teeth hurt. 

I haven’t posted many pictures of her stomach but I posted one so you can see the amount of fluid she has accumulating on a daily basis. Even with them draining, it reaccumulates quickly. It’s hard for her to sit up and really do much at all with the amount in her stomach. They are draining 3 times a day, a certain amount but you really have to be careful with the fluid shift and electrolyte imbalance if you take out too much, too quickly. It’s a balancing act! 

We have so much to be thankful for even though Addi has been through so much. She is here and we have all faith God is healing her daily. My heart was crushed again after hearing of a precious little girl who has neuroblastoma that is being sent home on hospice because it has reoccurred for the third time and has spread over her entire body. PLEASE if you’ve ever prayed before, pray for these children. They deserve a chance at life. They deserve to be a kid, go to school, date, get married, have children and live the life God intended for them. PLEASE pray for the parents that God will give them strength to get through the days. It’s so hard to watch your baby suffer while you sit and watch and have no way of controlling what is happening to them. God, we need you to intervene not only for Addi but for all of these children. We MUST find a CURE! These children and adults need a chance at life. If we can send a man to the moon, I KNOW we can find a cure for cancer!

God is so good and I just praise Him for another day with my sweet Addi. I praise Him for one more day closer to going home. I praise Him for the thousands of people praying for Addi and who love her so much. I am just so thankful today! God can give you JOY even in the darkest of days if you just open your heart to the JOY of the Lord. Don’t let this life and the circumstances bring you down. Just pick yourself up and JUST KEEP PRAISING until you have your breakthrough, miracle or whatever you have need of. I love you all and appreciate your love and support. 

Much love ~ LaLa