Life at Home and Update for the last 3 months

Oh it is so SWEET to be home! T took a min to remember that he did live here once but after a couple rough nights and playful days We think he remembers and LOVES being home. Life is about the same - Jeff and I are both working more but also trying to enjoy time together.

We enjoyed some family time in beaver at the Cabin. It was so nice, peaceful, cool, and very enjoyable. The kids loved it. T loved riding on the four-wheeler and playing with all the cousins and seeing all the animals. C also enjoyed the time with Cousins and just running and playing outside with out melting. Although she did not the guns going off when the boys were shooting.

9.18.2017 Time for an update on this drink stealing kid! Things have been ok at home. We have been super busy playing and working. And We have had a few small bumps. Ts kidney function started to go abnormal about a week after being home and never improved with adjusting of the meds. So now he is getting over night fluids through his port. Which have helped his kidney function a ton. These post BMT patients need like 2x the normal amount of water intake so this is probably a better way to judge how much water he is truly getting. We had our first follow up at PCH last friday. We were able to🛬 fly up and back which made the trip nice. But at the appointment we got some not so great news👎. Ts number dropped down to a range that they felt he needed a boost again, and since the cold bug came to our house and T started to show signs of a cold. At the time we thought we could do it at home and just have home health come do it but our insurance would not approve it. So luckily today we were able to have our Primary Care doctor put in the order and go to the peds floor in the RTU (rapid treatment unit) area here in st.g for a little bit and get that medication we needed. So now here is to hoping 🤞 for good numbers come Wednesday night's blood draw🙏. #Thasthebeatdancemoves #Tmantough2017 #toughliketanner #jolleyfam17

10.3.2017 Fall nights 😍😍😍 Things have been pretty quite around here. Which is the way we like it!! T numbers went back up after the medication and are holding strong. His cold is finally going away and he never stops playing. We are all healthy and Happy. We are loving this time of year and enjoying these moments in our beautiful backyard and home. #MissC #Tmantough2017#jolleyfam17

10.7.2017

"JOY comes from and because of HIM!" -Russell M. Nelson.

These people are my JOY that HE has blessed me with and I am so Grateful!

10.16.2017

A Day with Tanner Boy! Enjoy a good book,📖 play with Trucks🚒, and enjoy a Apple🍎... in one bit... almost!😉 T has been doing really well the last little bit. He is definitely a boy, he loves to eat, and has quite the personality. He is always making us smile and giggle, which makes him laugh even harder.#Tmantough2017 #jolleyfam17

Hey just thought we would do a quick update. T appointment went really well yesterday, so well that they want to start to taper him off his cyclosporine (the anti rejection medication) over the next 7 weeks. This is really exciting, this will be the tale of tales to know if he accepted his transplant. And how he does with it.

BUT one of his labs that takes longer to process came back a little low last night. So this morning we got a phone call telling us Ts Immunoglobulin was low...this is what helps fight bacterial and viral infections... so he needs an infusion of Immunoglobulin. Especially with cold and flu season upon us. So this afternoon we are hanging out on the Peds floor in st.g getting that infusion. #Tmantough2017 #toughliketanner #enjoyingthesnuggles

10.30.17 This little drugged up blanket mummys port line broke again! Lucky I was able to make some phone calls yesterday & talk with one my radiologists I work for here in st.g to do the procedure (taking out the line in his chest and putting in a PICC line in his arm). Everything went well. Now hopefully we can keep this line good for the next 4ish weeks to finish up fluids then get it taken out. #Tmantough #toughliketanner #jolleyfam17 #anotherdayatthehospital

11.12.17 --- 6 months ago was Day 1 of Chemo 😢🙈💙💚 Oh what crazy, beautiful, hard, wonderful, but 100% worth it six months.💚💙#Tmantough2017 #BMT2017 #toughliketanner 

Discharged to St. G

8.25.2017 Happy Day 100!! We are on our way home! We are so grateful for our wonderful Team of doctors along with my amazing sister and her family for allowing us to have a home away from home. T is going to miss his built ia friends and Britt and Dave. Whose names he said first out of all the aunt and uncles... although it took alot of the summer to learn. 😉 T is doing amazing and we will continue to pray for a smooth sailing from here on out. #Tmantough2017 #toughliketanner #MissC #jolleyfam17 #BMT

 Packed and OVER Packed but We made it work and made it home

We are going to miss this family!

Dreaming of all the tasty Ice cream we ate with Aunts, Uncles, and cousins the night before we left up north! It was SO GOOD! #MissC #Tmantough#jolleyfam17 #FAMILY

Emotions

8.23.2017
As I lay here in bed and listen to T talk to himself (cause he is suppose to be asleep) I cant help but be extremely nervous and sad but also happy and excited at the same time. We are so close to day 100 that I am thinking way to much and causing myself to panic that we wont be going home in a couple of days. And how much that will break my heart if it doesnt happen. And then the total opposite what if we do come home and something so horribly wrong / T ends up with an infection and has to be readmitted again. It Also makes me think how much things have change over the last 3 months. Tanner has change and grown up so much! He is becoming more and more of a toddler daily and less and less of my baby boy. This also makes me excited because he is becoming so fun to play with. He is THE biggest tease! And always has us smiling. Especially when we are trying to be a little mad at him.

So with all these many, crazy emotions going around all I can do at this moment in time is enjoy this sweet voice, animal sounds, and talking coming from the little boy laying in the bed next to me and pray like crazy we can be at home in st.g very soon and everything will continue to go very smooth there!!!! 

Bumps

8.17.2017 Hanging out in the angel hope garden at primary's to kill time. These kiddos loved it and i am so happy to be with them again! Its crazy how much they have grown up this summer. I still can just picture C as a little 2 year old and a new big sister and T just a Baby! Time is going by so fast! It just needs to slow down for a bit #Tmantough2017 #MissC #jolleyfam17#BMT2017

8.17.17 A small, little, unplanned, urgent trip to the OR for T today. His central line(port) got a leak in one of the lumens and it needed to be replaced as soon as possible. (Its not common but also not uncommon that this leak happen) It would have been a huge infection risk if we didnt replace it. And also T is still need lots of future blood draws and to save him from being poked all the time and his age, we decided to kept for the next couple of months. We are still hoping to be able to go home to st.g next weekend. And The doctors did not seem to think this would hold us back. T did good, fasting and anesthesia is hard on him but he still was a champ!