We have gotten a few messages and calls from people about the tornado in lake geneva to see if we were ok. We are fine, we have no damage or anything... the worst we got was that Jillian''s little tikes care moves about 2 feet over on the deck from where it was :) The path of the tornado went in the opposite direction of our house and it is about a 5-10minute drive down the road from us. Thankfully it sounds like all the people were safe despite the sirens not going off, and that is something to be thankful for.
Yesterday morning I realized we never got the mail Tuesday because we got home around the time the storm started so I went up to the mailbox yesterday to find our Magic bands!!! Our trip is getting close!!! I spent the morning starting to decorate our bands and I am hoping to finish them today. I am really excited for the finished bands. Jilli is just excited that she has a special bracelet to wear at Mickey's house.
I was also able to get Jilli schedule for her OT eval (next Wednesday), rehab clinic (next Friday), and for her eye appointment (first available opening: December).
We then headed to Children's for Jillian's GI appointment. Brent met us there and we decided to grab lunch from the cafeteria since the brand new subway in the skywalk was packed and since Cafe West changed companies I don't like their food as much. What we did not realize was that the main cafeteria is under construction. You can still get food down there right now but the only place to eat is outside, which was fine yesterday because it was nice out. We ate quick and then headed up. Jillian is officially at 11kg! Everyone is happy for the growth but stumped because she has been on the same schedule for about a year and last year she really did not grow much at all. One of the thoughts is that we have seen some good weight gain since she started on oxygen and that maybe her body was using up so much energy before just to breath that maybe now that she is getting help with that, her body is now able to grow. We will see if this trend continues. (She is currently at the 5th percentile for her height and weight for age, but because she is at the 5th percentile for both her proportions are right)
We met a new dietitian and she said to keep doing what we are doing. She was nice but I really missed Carly and Sara, when we changed GI doctors our dietitian changed too...
Jillian's doctor came in. She told us she had gone back and reviewed Jillian's motility study again this morning so that she had it fresh in her mind. She said that it showed an area in Jillian's throat that was not doing what it should. You should see pressures go straight down as food goes down and her's starts off right but does not do what it should all the way down. This make her a little less willing to do a fundo because her is worried that maybe food would not go all the way down then if it was wrapped because it might get stuck above the wrap. She said that if Jillian was a "typical" kid she would be a no brainer for a fundo but with all of this other stuff she is still on the fence and so are we. She told us that there is a really good doctor at Froedtert that works with adults on issues like Jillian's and that she has been trying to consult with him on Jillian's case but that they keep missing each other but he had some consult hours yesterday so she was going to try to go meet with him to see if he had any ideas. She also told us they are trying to get a new testing cath that would be beneficial in Jillian's case but she is trying to get the approval from the hospital to buy this expensive testing equipment. I wish I could send all of our Team Jilli money just to buy that, lol, but it would not even make a dent in the cost (but the money that we do raise for Team Jilli does help with so many things around the hospital!)
We asked if there was anything we needed to keep in mind with taking her to Disney to make sure she has enough fluids. They asked if we were going on a Wish trip and we said no (sometimes its a hard reminder that Jillian would qualify for some of the wish organizations). They said to just make sure she looks hydrated but otherwise we should be able to do her normal routine. She gets fluids for 17hr a day anyhow so most of the day she is constantly re-hydrating so she should be fine and she is off from 5-10pm when it is cooler anyhow. We told them that we are not bringing the scale or blender with for our trip, we are going to mix bottles as we need them like most parents do, and they said for a week that is perfectly fine and good for all of us to not stress about each drop of water and gram of formula for a week and just be a little lax about it for a short time. Scooping formula is not an accurate way of measuring most of the time for Jilli, that why it is weight to the gram each night at home, but for one week we are going to use the scooping method. I just keep reminding myself that parents of other two year olds are not counting their calories and fluids each day and for a week we can let it go and if we come home and she has lost weight we will figure out a way to make up for it, its not that she will not still get her 17hr of feeds a day of the exact same formula we give her at home, we just wont be measuring it to the gram for a week.
We also talked about how since her testing a couple of weeks ago Jillian has been randomly vomiting small amounts of clear liquid. She does not get upset with it unless you hear or see her do it you don't know she did it until you find the surprise. The day after her surgery we added two new meds and changed the location of one of the meds. The thought is that this probably has to do with one of those but since we did three different things at a time we don't know what is causing it. The goal is to increase her baclofin from 1.3ml to 2ml and we are also going to move her one reflux med back to oral to see if that helps but this time we are only going to do one change and then wait a few weeks to see if we see a change and then do the other.
We also talked about how we are going to need to continue to do EGD every so often to keep checking how her stomach and throat are looking and to see if her hernia is growing. I'm not sure how often those will be. She is two and a half and has already had 3 but I doubt this will continue to be this frequent and thankfully most of the time we are able to combine with with something else she needs to be in the OR for.
Then we headed to the zoo for a little bit since she slept through the zoo the day before. Normally she always wants to see the giraffe, elephant and monkey but she switched it up and instead of monkeys she wanted to see the zebra. It was a nice little walk.
Then we met Uncle Dan at Babies r Us. He was meeting me to lend me a charging phone case for Disney and he suggested we meet wherever we looked at princesses dresses the day before. He let Jillian pick out two princess dresses, Anna and Elsa. She is SO excited and she can't wait to wear them to Mickey's house. It was very sweet watching Dan and Jillian princess dress shopping.
Brent, Jilli and I met Jaime and Jason at Stir Crazy for dinner. Jilli sat like such a big girl and looked at books. It was nice to sit and chat. Then the boys went over to Guitar Center and Jilli, Jaime and I went to BuyBuyBaby. Jaime and Jason are expecting a little boy this December so Jaime and I had fun looking at all the baby stuff. Jilli was a goof and would get all excited anytime she noticed something we owned. She also got excited when we found an end cap full of Little People figures. They had a hair stylist with short blond hair just like grandma Jill. I told Jilli she could have it. It made Brent smile when he looked at it later.
We all met back up at Koops and then headed home way past all of our bed times. It was a really fun afternoon/evening though and we had a great time. It was exactly what we needed and I am so grateful for awesome friends to hang out with!
 |
| She put her shoes on herself! (she also set her hair bow on her head herself too!) |
 |
| Her new Elsa dress! |
 |
| My dad's magic band |
 |
| Playing with her new toy with uncle Jason |
 |
| Jilli in bed last night with her grandma Jill Little People |
No comments:
Post a Comment