Day +77

Today's daily photo is brought to you by Ariauna's daddy. He was playing with the kids' glow sticks and hooking Ariauna back up to her feeding tube for the night. Thanks daddy for the fun picture!

WBC- 10.0              106 days away from home
Hemoglobin- 12.9         
Platelets- 169
ANC- 6.5
Weight- 50.0

I just want to start off this post by letting you know that all of Ariauna's lab results listed above are actually all in the normal range. All of them are about in the middle of the range for their category except for her platelets. They are on the lower end of normal. Normal platelets are anywhere from 150-450 so she is just gotten into the normal range. Which means she could probably ride a bike and jump on a tramp again if it was not snowing outside here (yes, snow in Minnesota today). I am really hoping her platelets will continue to go up more and more each day. Also we are happy to say that she has not had to have a blood transfusion or platelet transfusion since we were released from the hospital 46 days ago. I also don't want to count my chickens before they hatch, so I am praying that by telling you this on the blog it doesn't jinx me. Ariauna is also one of the very few BMT patients that (knock on wood) has not been readmitted at all since she was released from transplant. It is very common to be readmitted a few times for fevers, etc. We are very grateful and feel blessed to have been able to stay away from the hospital BMT unit other than to visit our favorite nurses.

Ariauna woke up this morning with a bit of a tummy ache. Her tummy had been doing a bit better but because they have changed her feeding tube formula over to 1.5 calories instead of 1.0 it has been bothering her a little bit. We are still slowly trying to get her worked up to the 1.5 and have been doing it gradually, hoping not to upset her tummy to much. Here we are trying to get Austin to wake up for the morning. Poor Austin got kicked out on the hide a bed while Daddy is here visiting.

We did our normal morning routine of getting Austin and Sadie up and out the door to school. Then Ariauna, Jaxon, Daddy (yes in case you did not know, Daddy is here visiting again for a few days and we are enjoying every minute of it) and I all got ready for the day so we could get Ariauna to her clinic appointment. It is a challenge to get everything done and out the door in the mornings. Medicines and unhooking Ariauna from her contraptions takes some time. It was nice to have Daddy here to help us this time. Daddy worked on getting Ariauna her morning medicines and unhooking her from her feeding tube. We are still trying to work with her at eating some normal food to see if she can do it and still gain weight, so she has been taking some time off during the day and only having the feeding tube at night. In case you are curious how that is coming along, well..... She does eat a little bit, but probably not much more than what an ant or a bird eats. We headed out the door to catch the shuttle. Have I told you how lucky we are to have this shuttle service so we did not have to rent a car to sit here for 106 days already? It has been a great service and is just one more reason we are grateful.

As soon as we got to the hospital for our clinic appointment we ran into our little friend Tya, her and Ariauna share the same BMT birthday. We headed upstairs and shortly after we sat down in the waiting room, they came and got Ariauna to have her lab work done.

While we were waiting for Dr. MacMillan to come in Ari took Jaxon down to get a treat in the pantry and then her and Daddy played with the I spy game.

Dr. MacMillan came in and was once again amazed at how wonderful Ariauna looks. We visited for quite awhile with the doctor and talked about all of our questions and concerns. Ariauna still has her cold/cough that she just can not quite kick. Luckily she has not fevered (that means hospitilization for her). Her lungs still sound fine and clear and her ears all look good. They said it wouldn't surprise them at all if her feeding tube is helping to contribute to her nose and cough. They have treated her with antibiotics already and continue to test her for any sign of something weird or viral, so far things have all been negative. We talked about Ariauna eating and how that was going. She lost 0.7 on her weight again today. So she needs to try to eat more. Ariauna has been given permission to pretty much eat whatever she wants. Candy, potato chips, anything that will help her get some fat on her little skinny body. We will also continue to work on getting her up so she is only on the 1.5 calorie formula at night. We are just doing it slow, hopefully to help her tummy. She also talked to us about having her drink more stuff that have calories in it like soda pop, milk, shakes, etc. We asked the doctor about her fingernails today. She was not surprised at all and said that nails are definitely fast growing cells in our body and the chemo can definitely kill them off. Some kids lose them and some kids don't. Well Ariauna is, I don't know how well you can see it in the pictures, but every single one of her nails is falling off and new one's are growing underneath. It is the strangest thing! So far her toe nails are okay, but we have been warned they could be next. It has not been the most comfortable thing for her, in fact tonight she had to put a band-aid on one of them because she is afraid it is going to get snagged on something.

We went over her medications and the only real change she is making is to try to cut her prescription prilosec back down to once a day. If in a week she is still doing okay then we might be able to completely get rid of that one. Yay! We also got permission today to go down to only once a week clinic visits. Yay, so we are off until next Tuesday. That was very exciting news! They are checking her sirolomus level today (that is her medicine she takes to help her not reject the transplant. The last few weeks her levels have been high so they have been cutting her dose down. After our clinic appointment we went down to catch the shuttle and we barely missed it. So while we waited for a half an hour for the next one to come, I ran upstairs to the BMT unit to say hi to our friend Dawson and his mom Penni. They just got flown in a few days ago from Alabama by a medical plane. This is one of our FA buddies we met during transplant. He has now gotta be over day +200 and is still having gut and bowel issues. Poor kid! They did just do a BM biopsy and aspiration on him and he is still 100% donor cells so that is good. They just can not get him to quit having pain in his stomach. It was good to see him and his mom. I pray for them everyday and it breaks my heart to see and hear what all he has been going through. He is going to be 13 in December and he weights less than Ariauna. Today when I saw him he looked so skinny. Praying for you little Dawson and hope they can get some answers for you really soon. I got back down stairs to meet Jerry and the kids on the shuttle. We got back to the Ronald McDonald House just in time for Ariauna to have lunch and have her tutor come. Here is Ariauna and her tutor Mrs. Julie who she has had the whole time we have been in Minnesota. Ariauna just loves her and we are so grateful for all she has done to help Ariauna with her schooling.

While Ariauna had school, Jerry, Jaxon and I went down to the main floor to have lunch and then Daddy spent time playing trains with Jaxon a little bit.

I did a little bit of work and got things ready so that when the kids take their nap this afternoon, I can make some phone calls for work. Things here are a little tougher with trying to work, but I am trying to at least work a little bit because the medical bills are starting to roll in.

As soon as Ariauna got done with school we went for a quick walk over to the stadium to Goldy's Locker Room to let Jerry see if there was a University of Minnesota hoodie that he could not live without. We ended up leaving there without a sweatshirt for either one of us. They ranged any where from $50-$75 and neither one of us loved them that much. We stopped and got a shake for Ariauna on the way back in hopes she would eat it. She did have some of it, but I am sure not enough. They actually have said that her tummy has shrunk since it has not eaten in over a month so instead of having three big meals a day, she should be having like eight little meals a day. Makes since I suppose. We came back and got Ariauna and Jaxon down for a nap, yes Ariauna is still very busy making cells and takes a nap every day with Jaxon. I kept the laundry going and started my calls for work and I worked until 5:15. Ari and Jaxon had a good little nap and Jerry even got a short nap in with them. Austin and Sadie came home from school and both wrote Camilla a letter back, she sent us all a personal letter in the mail last week, it was very cute of her to do that. Sadie went to the cooking class at 4:00, I tried to wake Ariauna up but she decided to keep sleeping instead. Sadie came back up later with some fun cupcakes they had made. We ended up having to wake Jaxon and Ariauna up from their nap. We got a "Love Chain" package today from Grandma and Grandpa Watterson. The kids were super excited to get it and it was Jaxon's turn to open it.

Grandma and Grandpa sent the kids a few fun Thanksgiving crafts to do, a nap time door knob hanger to make, some choo choo trains for Jaxon, some popcorn and a new movie that actually has 12 timeless classics on it. It also had the Spot it Junior game which will be fun to start teaching Jaxon. We have the regular one and the older kids really like it. The package even came with some starburst candy corn's and a special bag of my favorite treats from See's candy. Thanks Grandma and Grandpa for a fun package. It should definitely give us some new fun things to do. We then went down and ate dinner as a family. I absolutely love having our whole family together at the dinner table again. And long for the day we get to be home in our own, quiet little house eating a meal all together. Dinner tonight was several different kinds of soups and grilled cheese sandwiches with salads and desserts.

After dinner we took Jaxon over to House one for Pet therapy. They had a couple of dogs there tonight, but one was a really big dog. Jaxon was not so sure about it.

The evening activity tonight was another Thanksgiving activity. They read the kids the book about Thanksgiving and then they made little tepees.

I came back upstairs after they started reading the book so I could work some more. I have a job that needs to be uploaded to work tonight so I needed to get it done. After the activity, Jerry and the kids with some of our other RMH friends worked on a new puzzle the kids started last night after we finally finished the other one. Once the kids came upstairs with Daddy, we did the bed time routine and tried to get everyone tucked in bed. Well it is almost 2:00 in the morning and I need to get to bed. I am going to try to do better at blogging, however I am still missing some daily photo's and I don't want to post without them so hopefully they will be coming in soon. I also have full intentions on going back and finishing the past days that are not finished. I have started numerous posts and have all my notes jotted down for what was happening. There was a lot of pictures for the post today. I have been trying to be better at taking photo's with daddy being here with us the last few days. Daddy leaves tomorrow to fly back home and I know we are all going to shed a few tears again. We are on schedule to go home a month from today and so we are praying things continue to go well and we can get home.

Today I am thankful for many things as usual. I am grateful that Jerry can be here with us again and am so grateful again to the Condie's for giving him more frequent flyer miles so that he could come and be with us. I will forever be grateful to them for helping our family stay connected. I also feel very strongly to once again thank my Heavenly Father for the blessing of Ariauna's health and strength during this journey. She is doing so remarkably well compared to some kids that go through transplant. Yes, we have had our issues, and yes she is still able to catch anything and be right back in the hospital in a blink of an eye, and I have learned in watching a few other FA kids lately that things can turn from great, to a nightmare in a blink of an eye. I just found out today that another one of our FA kids we are following has been diagnosed with leukemia and my heart just breaks for him and his family. Seeing our little friend Dawson and his mom today just broke my heart to think that even at day +200 and something he is still having problems. I thank my Heavenly Father every day that Ariauna has been able to make it through this so far without too many problems and I pray for those of our FA friends that are struggling. I have so much to be grateful for....