Brown and Pink Polka Dots : GI, Ikea, sweat, swallow, and B to 3

GI:
Friday we went to see GI. We walked in and checked in. We sat over by the fish tank and as I said "Jilli look at the fish" she vomited everywhere. Yeah, I'm not prepared like I once was with spewing vomit. I had a ton of extra clothes for her so I just used some spare pants to clean it up. We then took her back to weigh her and such. Before we left the house in the morning I put a urine collection bag on Jillian because we were trying to get pee for genetics. While in the waiting room Jillian peed out the bag so I took it off of her so we could get an accurate weight. Her weight is still right around the same and so is her height. We then went into the room. I stared to put a new urine bag on her as her awesome nurse walked in the room. Lisa jumped right in and helped me put it on. Lisa and I talked for a little bit and then the nutritionist came in. We are switching Jillian to Elecare Jr, but we are still going to mix it to 20cal. We are also going to be upping her 1ml/per hr each week until she is up to 61ml an hour (she is currently at 55ml per hour so it is going to take 6 weeks to get to our new rate). While the dietitian was in our old dietitian Carly came in. Carly and Jilli have a special relationship. Carly played a large part in Jillian moving from a NG to a NJ tube. While Carly is no longer our dietitian, she still sneaks in sometimes to see Jillian. Jillian was all excited to see her! The doctor then came in. We talked for a little bit and she said she wants Jillian to have another swallow study done. Other then that the appointment was not too eventful. Jillian did end up peeing in the bag while she was there so we were able to bring her pee to the lab.

Ikea:
After we left GI we went on a hunt for a post office to mail some Tubie Friends. After 4 posts offices we were finally able to get them mailed! Jillian and I then headed down to Ikea where Brent met us. Brent had been taking a class in that area all week and had spent Thursday night at a hotel down there. We were going to Ikea to pick up a couch for my little brother because he is about to leave for grad school. While we were there we got Jilli a cheep little train set to go on the train table. We also found a major deal for us! We were upstairs looking at kitchen table and chairs because our table is a small pub table and does not fit very many people around it. We have weekly dinners with friends and it can get rather cramped around our tiny table. We have been dreaming of a new table but there was really nothing in the price range that we had to spend that was worth buying. We got downstairs to the as-is section and there was sitting, the table we were just dreaming of for less then we had saved up. We were so excited. It has a couple of tiny scratches but they just make it look loved. We then played fit the already assembled table in the car game. I LOVE the new table... and the best part... we have been eating dinner at it every night. We normally would only eat at our old table when people were over but now we have been sitting down and eating together and talking and praying together (our odd little family of 4). There is now room for us all to sit comfortably at the table. That to me makes the new table worth a whole lot!
After we left Ikea we went over to Chevy's and met my cousin Jess and Ryan for dinner. Jilli was such a good girl and the big people enjoyed hanging out and talking. After dinner we went over to the mall. Jillian loved seeing all of the Crocs at the Crocs store. She wants a pair of Crocs to wear so badly but they are too big for her feet. When she sees Crocs she takes her shoes off and wants to put them on. We also went over to the Disney Store. She was spoiled by Jess and Ryan and they got her three princesses that are just her size and a Doc McStuffins phone. Strangely though her favorite thing to hold on to at the mall was Jessica's Arie bag. As the mall was closing we tried to go to Cheesecake Factory for dessert however it was getting late and they still had a long wait so we went over to the Toll House Cookie store and got dessert! We then all headed home.

Saturday:
Saturday we cleaned the house and worked on house projects. They boys cut the lawn. Jillian played and hung out. I carried her around for a little while in the Moby Wrap. I still LOVE that thing. I dont use it much anymore because she is so independent but there are times that it is just so handy!
Sunday:
Sunday morning we work up to a mess. A med port popped open on the j tube sometime during the night mess. It stunk and made a HUGE mess but the worst part was that when all of the tummy juices leak out they "burn" her skin. It looked and felt like a really bad sunburn! It was all down the back of her legs and on her butt. I felt so bad for her.
We went to Church and after Church we went to a graduation party for a family friend from Boy Scouts (Brent and my brother are Eagle Scouts). It was fun to see several people that I had not seen in a few years. My in-laws were there also so Jillian got to see her grandparents. We then headed back to the house and worked on a few more projects.

Sweat:
Monday morning Jillian and I got up early and headed to Children's. She had a sweat test. For the sweat test they put a solution on her arms and then put electrodes on her arms. They then turn the electrodes on for 5 minutes. Jillian did not love that part. Then they put pads on her arms and tape them down to collect sweat. Then I put a sweater and jacket on Jilli. We were then given a piece of paper that told us to come back in a half an hour. Jillian was rather attached to the piece of paper. It was cute. We walked down an got on of the Egg bake from Cafe West (YUMMY!) and coffee. We went back a half hour later and Jilli gave the lady back the paper. They took us back in a room and we took Jillian's extra layers off. Jillian kept pointing to the stuff on her arms like "do you all know this is here?!?!?" They took all of it off and once they checked to make sure they had enough sweat we were told we could go. Jillian was such a big girl! After we got done I told her we would go to Build-A-Bear. We had a promo gift card from when we got her monkey to spend. (gotta love free stuff!) We went and she picked out the surgeon's outfit for her monkey. She held onto it with such pride as we went to the check out. She handed the guy the outfit and he put it in a bag. Then he went to hand me the receipt but she grabbed it and put it in the bag like I normally do. It was cute.
I got an email Tuesday saying the sweat test was negative meaning she does not have CF!

Birth to 3:
Birth to 3 came over in the afternoon to do her reassessment. Her service coordinator, speech and PT came out. In both speech and PT she is functioning at a 12 month level (she is just over 17mo). We decided to start having both speech and PT work with her. She is such a smart little girl and wants to walk and talk so badly. One of the suggestions to help her to learn to walk was to get her flimsy walking toys. She has great sturdy walkers however they wanted something that would fall if she put too much wight on it. Tuesday after work Jillian and I went to Target and she got to pick out a flimsy walking toy (I have to admit it was hard to spend $20 on a flimsy toy!). We found a little doll umbrella stroller that came with a little doll. She is in love with the doll. The stroller is hard for her to push because it tips so much. With time she will get better at it.

Nebs:
Jillian has been doing nebs daily since our trip to the water park. It is hard to see her struggle so much with just getting a little water in her mouth. Thankfully the cough is getting a lot better and she is almost completely off nebs. Sadly we have used so much neb meds again that we are in the run around to get more from our insurance company. Have I stated lately that I don't like that we have to use the mail order pharmacy from our insurance company? I know the thought is that it will make it easier however it does not. More often then not it is a total pain. And the worst part is that for many of Jillian's meds it is cheaper to get them at Walgreens.

Insurance:
Do you want to hear our cool news?!?!? This week Jillian was approved for Katie Beckett. That is a state insurance for kids with significant medical needs. The hope is that it will help to pay for her very expensive formula and her medications. As cool as that is, this process has been HARD for Brent and I. We know it will help Jillian and help our family but surprisingly there was a lot of emotions with this. Brent and I are not people to go seeking charity. We will try as hard as we can to do it on our own. Applying for and accepting state funds is not easy for us. Also in this process the state looks over all of your child's medical records and the child has to be deemed "disabled" under the standards of the Social Security Act. It is one thing to know your child has a lot of medical struggles, it is another thing for the state to say it. You never think your kid will be one of "those" kids until your kid is. We try so hard to give Jillian a "normal" life. She has seen so much and been through so much in her little life already, but she is one strong girl!

Run/Walk:
This year we are participating in the run/walk for Children's Hospital of Wisconsin again. I am really excited! I love this walk because we get to give back to a place that give SO much to us! I am sure I will be posting more about this later, but I just wanted to give a little shout out now because it has really been on my mind as I have been getting everything started and organized for Team Jilli!