ALEXA'S JOURNEY TO A NEW LIFE

Friday, August 8, 2014

Day 39 of recovery

8/8/14

Day 39 of recovery

Guess what happened today, we saw Dr. Chinakotla & he says WE GET TO GO HOME NEXT WEEK!!!!!!!!! Here we were originally supposed to stay for 2 whole months and that was the earliest we would be able to go home, but Alexa is doing so well that we get to go home so much earlier!!! It is so much earlier than we thought that Tyson will have to miss his flight home that is scheduled for Aug 18^th & he will get to drive home with us! I’m very sad that the ticket is nonrefundable!

Yesterday we went back to Mall of America to show Chelsea & Shayla how awesome it is. We were going to get tickets to ride the rides but decided to wait till next yr when we have to come back for the 1 yr checkup so Alexa could enjoy the rides too. We met up with Austin Clements & his friends from Arkansas & Ty, Alexa & Tyson enjoyed playing a game of mini golf, which team Ty & Alexa won I believe. Shayla, Chelsea & I shopped around while waiting. That night was Bingo night again at RMH. We have so many toys now that I don’t think I’ll have to do much Christmas & bday shopping for a while for the grandkids! I had Chelsea & Shayla each bring another suitcase that was empty since they flew on Southwest & it was free, so they can take all of the treasures back for me. Shayla ended up winning the grand prize in blackout Bingo!! She got a $15 ITunes gift card plus had her choice of a huge princess Barbie set or an automatic (machine gun type) nerf gun that shoots up to 75 feet!! We told her to choose the nerf gun but I don’t think she should let Ty get ahold of it, haha!! We would all be in trouble!!

So this morn the whole family went to the appointment to see Dr. Chin. He was very happy to meet all of them & thought it was so great that they were all there. He said he is so excited about how well Alexa’s surgery & recovery is going. He told us that we could go ahead & stop the feeds in the feeding tube completely & start taking all of her meds in pill form by mouth & he took her off one of her meds that is for high platelets since hers were almost down to where they were supposed to be, yay! Then he said that if all goes well they would remove the tube next Wed & we would be free to go home on Thurs. Later they changed & told us they would remove the tube on Mon!!! We have to stay till Wed though since Tyson has a dr apt Tues & Alexa has her final one on Tues. Alexa, Austin & another boy named Tyler are going home so quickly after their surgeries too. One of the nurses, Mary, told us that it is so unbelievable, she says that never happens! She says most people end up staying for 2 ½ or 3 months at least! Dr. C told us we need to be very patient, that it will be a very slow recovery. Alexa has been sick for so long that it will take quite a while for her to get completely better. He also said he is calling our GI dr there in Utah. I still need to find a good endocrinologist there in Utah, preferably an adult one since Alexa is almost 19. I emailed Dr. Bellin, the endo dr, when we got home, & she said to just keep Alexa on the same dose of insulin, which isn’t much at all. After the dr apt we all went back to RMH & got a call saying we forgot to have Alexa get an x-ray the Dr. C wanted to see if her stint had come out. We had to take her back down to do that & then Ty & I left to go for a drive along the river. The nurses at the hospital told us about a really cool drive with nice big old houses to look at along the way. It was really pretty. That night we went to a Minnesota Vikings football game, complements of RMH. They gave us the tickets. It was fun but we left about ½ time. We walked all the way there & back which was about 1 ½ miles & Alexa did really well. MIRACLES DO HAPPEN! Thank you for all of your prayers!

Ninja Turtles!

Ty just finished saying, "I don't care what it says, she's smoking!" & guess what it came up with, Smoking, haha!

Mini-golf at Mall of America

Towards the end of Mall of America, Alexa wasn't feeling too well

This is an old fashioned dress shop in the mall that the girls just loved!

Lego Land

Alexa with Dr. Chinalotla & his nurse, Marie! Dr. C is an amazing man! We are so happy with the awesome job they did!!!

Princess Lucy with Princess Alexa & Shayla

Minnesota Vikings Football game!

They had the little guys come out & play at half time

Thursday, August 7, 2014

Day 38 of recovery

8/7/14

Day 38 of recovery

The last couple of days have been extremely busy. My birthday was on Tues, the big “50” but my kids had no idea since I have been 37 since I was actually 37, haha! Tyson had 4 doctor appointments that day & Alexa had 1. Ty got up & took Tyson to his 1^st appointment while I got ready then I took him to the rest of them. We had a break & decided to go get something to eat & do some grocery shopping. We started out trying to find a Target & added a place to eat into my GPS. She kept taking us to places that were really crowded like malls & parts of town that we didn’t really want to get out of our car, we passed a topless bar a couple of times. We ended up driving around for over an hr being lost with our lovely GPS but we were able to see lots of different lovely things in St. Paul, MN. A few of them we saw over & over again, haha! My GPS really has a sense of humor. I think she could tell I was lost & started saying things like, “Turn left after the big brown bldg. on the left,” & “Turn rt after the big glass library on your rt.” No kidding, she really did say those things, haha!! While we were having our adventures Ty & Chelsea took Alexa to get her picc line out. They all took the shuttle over there. Things didn’t go as smoothly as Alexa hoped, the nurse had to go get someone to help & it hurt but she is finally free of it!! I feel like Tyson’s appointments went really well except 1. All of the doctors are convinced that he is having these headaches because he is so tense & PT is showing him several ways to relax & the psychologist has given him lots of breathing exercises to help relax. The only one I felt was a waste was going to the TMJ specialist. I don’t believe he clenches his jaw much & I don’t think the specialist thinks that either, he really just wanted to rule that out I guess. These doctors see people with headaches like this very often & they work as a team. I feel like this is part of the reason we were led to come here, so Tyson could get some help too!! We finished there & got back to the RMH right at dinner time. Guess who joined us for dinner, Ronald McDonald himself!!! We felt so honored, haha!! That night RMH had a party in the park across the street. First they had pet therapy & Alexa was in heaven! She loved this huge dog that came & stuck with him till they left. When the dog finally left she joined the party. They were making colored chalk bombs & having chalk wars. I was really surprised when one of the workers convinced Alexa to join in the chalk wars. She was covered!! After that Chelsea had a little bday party for me. She passed out some very annoying & loud horns & had some extra so gave some to the kids around the house, I’m sure their parents were so happy about that! Austin & Ann Clements came to the sitting room & we had Chelsea’s homemade zucchini bread that she had brought me in her suitcase & played Taboo. Shayla got into the airport at 12:30 that night & Chelsea went with Ty to pick her up.

Wed we decided to go to the Minnesota zoo. We were able to get free tickets thru RMH which was wonderful since it is $18 a piece to get in! Tyson had a dr apt that morn at 10 so I took him to that 1^st & when we got back we headed out. It was a really good day & we loved this zoo. We were able to get up close to so many of the animals. Alexa really enjoyed it till the very end when she started feeling very sick & her meds were wearing off. We had gotten her a wheelchair but she only used it about half the time. We got home & she was totally wiped out & took a little nap while we ate dinner. We were all really tired so just watched a movie. Today we are planning on going to Mall of America again & we are looking for a fun cruise on the river, that’s what Alexa wants to do. It’s been a lot of fun having Chelsea & Shayla here with us even though our apartment is very small & we are all squished in here. They ended up putting their air mattresses out on the deck since there literally was no room in here. They said it was actually really nice out there. They have all loved playing down in the game room together. Alexa is doing pretty well since going to 12 hr feeds on her tube. She has been eating a bit more, I guess we’ll see how well when we go back to the dr.

Youtube videos:

http://youtu.be/_GORYJDnQpw Alexa with Dogs

https://www.youtube.com/watch?v=eNzRfELCx0Y The big birthday party

https://www.youtube.com/watch?v=sKEnsFw976A Just Dance