CATCHING UP on Blog Posts……

I am a little behind on updates so here is to get you all up to date who follows the blog…..

March 26, 2019….

Addi’s team of doctors are telling me they hope Addi can go home by Friday but can’t be very definite. Having a really hard time with fluid balance so they really want to see if they can get her electrolytes balanced and see if her body will start absorbing all of the fluid that’s in her body without opening her drain. In typical Addi style she has them stumped on a few things in regards to all of this fluid balance. Just too much to even try and explain in depth.

Talked with one of the doctors on her regular oncology team that works with Dr. George. They are still discussing Addi’s treatment options going forward and don’t have a concrete plan but will by next week when I meet with them. They are thinking it will probably consist of chemotherapy and radiation. They will give her a few weeks at home to recover but feel that it needs to begin as soon as possible so that we don’t give the cancer a chance to reoccur. She is at such high risk for liver failure again that they feel stem cell and immunotherapy might be too risky for her but it may be an option later down the road…..way down the road.

Sometimes in the midst of difficulty when you are in a dark place it is hard to really see what God is doing. It’s hard at times to imagine that there could be something good that’s coming from our struggle and pain. It’s hard to imagine THIS could really be part of His plan. God has shown me something very real in all of this….He has taught me to stop thinking so much; to stop obsessing over the problem but instead have faith and trust that He is in control and that His plan and will is going to be fulfilled regardless of my doubt and worry. He’s shown me that no matter what the outcome….everything is going to be ok and that God is working out His plan right in front of me even when I can’t see it. Remember, you aren’t drowning….God is just teaching you to swim. Be encouraged today. God is always with you and He never fails!

Thank you for the prayers. Keep them coming as Addi continues to improve and gets ready for the next step in her journey! Much love ~ LaLa

T-shirts:
https://www.bonfire.com/store/addis-journey/

Addi’s Beads of Courage! She gets beads for different things like…a bead for every night she’s in the hospital, for every day she has chemo, a bead for every transfusion, a bead for every test or scan, etc. So she has a lot of courage and a lot of courage! I can’t wait to string these beads and do portraits of her!

She doesn’t realize she is in therapy!

Not a lot to report today. Addi has had a quiet day. She has slept the majority of the day. I hope it’s because she is just tired but they are checking some labs just to be on the safe side. Still hoping to go home on Friday but all of that is up in the air and contingent on her electrolytes and how she handles the fluid when/if they remove the tube. May be going to surgery in the morning for drain removal and to be stitched up. Addi and I are REALLY ready to get home so lots of prayers that it all works out please. I believe she will perk up and be more like herself once we get home and she’s in her own environment! She is just so over all the poking and prodding everyday! I’m missing her smile and spunkiness and ready for her to be back to normal! She has a long road ahead of her but she has a family that loves her more than anything and ready to do whatever it takes to get her well and keep her cancer free! 

We had some special company today. Our favorite Scottish Rite nurses came to visit. We just love them. Their actions shows how much they truly care about Addi. You have to be a special person to work with kids that have cancer and these ladies….well, they are extremely special. We had a little picnic today. Addi wanted a hamburger so we went to the cafe and got one then went out to the garden to eat. It was so great to be in the sunshine. It was a short trip but it was so nice. It’s strange to be inside for so long that the seasons have changed. I had to get my daughter to bring Addi some different clothes to go home in because now it’s too hot for her furry boots. Lol! Yeah, we’ve been here long enough!

I am really tired after all of these days in the hospital but today God reminded me of this Bible verse and reminded me that He will renew my strength so I just need to wait on Him.
“But they that wait upon the Lord will renew their strength. They shall mount up with wings as eagles; they shall run and not be weary; they shall walk and not faint,” Isaiah 40:31

Be still and know He is God and find your strength in the Lord my friends. As always…..thank you all for your love, support and prayers!  

March 29, 2019……

We got some discouraging news about three hours ago. I had gotten all my training on how to care for Addi, home supplies ready and everything packed and in the car ready to go home when Addi’s team of doctors came in and told me that the IR doctor was not comfortable letting her go home with the amount of fluid that had built up in her stomach. We were instructed to drain the stomach fluid twice a day but with no way for us to know or be able to stabilize her electrolytes if they get off balance because of draining a lot of fluid at home, the doctor was just not able to discharge her. She is saying she could be here another week maybe two. She said if her body does not start absorbing the fluid like it should by the end of next week that she will put in a permanent stomach drain that she would feel better about sending her home with and would keep her from getting any infection. She told me although it’s “permanent”, it can be removed.

To say we are frustrated would be an understatement. We get told one thing by one doctor and then something else from another. We definitely only want what’s best for Addi but it’s frustrating when you have so many opinions and cooks in the kitchen so to say. I’m just praying that God will begin to bring everything in her little body into order. She’s went through so much but continues to be so brave. Please pray for Addi that her liver will begin to function as it should and fluid subsides. She’s very uncomfortable with the amount of fluid that is in her little tummy. Pray for the doctors to have the knowledge to treat Addi because quiet frankly they’ve told me they just don’t know. She’s a mystery to them and so many things are still unclear. And pray for us….it’s been 40 days today at this hospital and we just want to take our girl home and get back to a little normalcy but all in God’s time.

As I was typing this post I began to look through my pictures and I started crying to see how far she’s come. There were times that we thought we would lose her so God reminded me of a few things and that frustration and disappointment I’ve been feeling tonight quickly turned to complete and utter thankfulness. It’s been a long, hard, emotional 40 days but in the end, Addi is still here with us and getting better so now we just pray that God continues to heal her and she can go home soon!

Thank you all for the prayers and support. Please keep those prayers coming. We want to take Addi HOME! Much love ~ LaLa