Brown and Pink Polka Dots : GI test results, easter, and Pulmonology

So I have not blogged in over 10 days and a ton has happened in those several days so be prepared for a long post!

GI test results:
Last Wednesday we got the test results back from her PH probe test.... drum roll please...... she has a lot of reflux! Who is surprised by that? Does that blow anyone away? She is outside of the normal limits for both kids and infants (infants have a higher upper limit because they reflux more). They called it extreme reflux. They said they could see on the test all the times she is gulping stuff down. Yup, she does that a lot.
There is not much we can do with these results though. She is already on the highest meds she can be on. She is not a good candidate at this time for a fundo because of her gastric emptying issues. We have to just keep doing what we are doing. Thankfully feeding into her intestines makes things a lot better because she is not refluxing food. We are blessed that it was figured so quickly (relatively in comparison to a lot of kids) that J feeds would change Jillian's life so much.

Easter:
Our Easter celebrations started off the Saturday before. Brent's parents go to Florida to visit his grandparents for Easter so we had dinner with them the Saturday before Easter. Jillian loved playing with her new Little Mermaid toy. She is such a princess girl! She also loved showing her grandparents her new tubie monkey. It was interesting because it was the first time we took him out in public. One young guy (our age) walked past and said to someone with him "whats wrong with the monkey?" From the time he noticed the monkey as he walked past us until he was too far away for me to hear, he was talking about her monkey and how bazaar it was. I would rather someone ask me about her monkey then to have to listen to them talk about it with that tone. I am sure this will happen again. Its ok. I hope that Jilli's monkey helps people to understand that sometimes people are different but they are still cute and fun just like her monkey.
On Good Friday Brent took a 1/2 day to come home and do Easter with us early and so that we could get packed and clean the house before going away for a few days. We let Jillian open her Easter gifts from us after her nap. It was a duplo year at our house. I found a Cinderella and a Jake and the Neverland Pirates set on an amazing sale before Easter. She loved them. The Jake set comes with a little row boat and she loved putting Cinderella and Jake in the boat.
Friday evening my Aunt Sandi, Uncle Tod, and Cheese came over. They brought Jillian a very special gift. When Cheese was little Grandpa Len made him a beautiful train table. Cheese brought it to Jillian this weekend so she can now play with it. We got to show Cheese and uncle Todd our house too. After they left we headed to dinner and then went grocery shopping.
Saturday we headed into Kenosha. We stopped at Starbucks for lunch, mom and I ran some errands and then we went back to the house and Sandi, Todd, Cheese and Grandpa Len came over to my parents to celebrate my brother's birthday. It was a nice night hanging out with everyone. It was funny. Jillian wanted to watch her DVD of Curious George. She kept bringing it to people hoping they would put it in. Eventually Aunt Sandi put it in for her and we all sat and watched George.
Sunday morning we all went to Church. I was a really good service. It was also great to see so much of my extended family. After church we headed to HuHot to celebrate Seth's 22nd birthday. We then went back to my parent's house and celebrated Easter the 5 of us. Jillian was funny opening her basket. She got so excited about each thing that she would completely forget that there were other things in the basket.
That night my mom's side of the family came over for dinner. Jillian loves sitting in her high chair and playing while others eat. Since all of us grandchildren are older the only one doing an egg hunt this year was Jillian. Instead of doing a normal egg hunt we gave each person in the family an egg and my cousin Jess took Jillian around to each person and she grabbed the egg from them. At first she was not sure but after a couple of people she thought it was a lot of fun and loved shaking the eggs (they had coins in them). She had a great time just sitting on the floor shaking her eggs and playing with the Sophia the First phone my Grammy got her.

Monday:
I had Monday off because Jillian had a doctor appointment and my mom is off this week because it is spring break. I spend Sunday night at my parents since my mom was going with us to Milwaukee anyhow. In the morning we got up and went to Party City to get decorations for my grandparent's 50th wedding anniversary party and for my brother's college graduation. We then stopped at Target to exchange something. Next we headed to Milwaukee to Betty Brinn Children's Museum. Jillian had never been to the children's museum before and she loved it! She was so silly going down the bumpy slides because she would get 1/2 way down, grab onto the sides and then flip over onto her belly. Cool idea for a "normal" kid, not the best idea for a kid with a feeding tube sticking out of said belly. Each time she did it I worried that she would pull her tube but thankfully it stayed in place. There are hundreds of everyday things that you need to think about differently when your child has a feeding tube. It is not that she can't do most things, it is just that a lot of them need to be done differently. I loved how they had a "garden" pit in the tot area that instead of having sand it had large plastic chips. It was great because she could not eat them. I would love to find those chips someplace because that would be great to make a Jillian safe "sand" box at home.
We played for a while and then we headed to lunch. Jillian was a goofy at lunch. She thought she was the funniest thing in the world. It was really cute!
We then headed over to Children's for her pulmology appointment. She has grown .1 inch (from 29.2 to 29.3in). She has been hanging out in that same .6inches since January. She is hanging out in the 9.5kg area still. My mom bought her 9mo shorts for Easter because she has thinned out around her middle a lot. She looks a lot chunkier because of her tube and belt but little misses' 12mo pants are falling off of her. Silly girl is not suppose to be going backwards in sizes!
The nurse came in and we updated her. For some reason Jillian's meds keep getting messed up in the computer system. I am really not sure how it happens so often. The nurse asked if she was developmentally on track and we said no for speech and gross motor. All of the other areas she is good. She asked about birth to 3 and I explained what is going on there and the nurse said she would help us get interventions for her if we need.
The doctor came in and we talked about all of the times that she has been sick since we were there last in January. She said that she wanted her on a stronger med. She is now on Advair two puffs twice a day. She also added Zyrtec because Jillian frequently has a runny nose and cough. The doctor wants to see if we can get the amount of drainage down so that hopefully there is less sinus drainage into her stomach.
I asked the doctor what she thought about food trials since they make her so sick. She really thought about it. She said that while she does not want to deny any child the opportunity to eat orally, that with Jillian, if she is going to eat by mouth it needs to be in a controlled setting with professionals watching her, not just us at home. I am really glad I got her opinion on this.I feel a little bit like GI blows off the lung part sometimes and are so focused on getting her to eat that they forget about everything that her eating does to her lungs. Yes I want my child to eat, but it needs
We then headed home from Children's and mom and I stopped at Target and Marshall's in Lake Geneva. We then headed over to Walgreens to pick up her new meds. With all of the medications added and changed over the past two months her monthly medication bill is now well over $200 a month after insurance! Little miss is a pricey little thing.
Mom then headed home and Jilli and I met up with Dan and Brent for dinner. It was Dan's first day of work at Bell Ambulance and we went out to celebrate!
Tuesday:
Tuesday Jillian pooped! She had not pooped since the Thursday before Good Friday! For a little girl on daily laxatives, that is a long time. It took a lot of laxatives to get that poop out! She gets really backed up like this every few months.
That day during lunch Brent went over to Ikea and got us two new love seats! Our double glider rocker in our living room was as old as my brother and had broken. We were in need of something new. I went on the Ikea website this weekend and they had love seats that turned into beds on clearance for less then we could have gotten something on Crag's list! I was so excited! Tuesday night Brent put one together before he left for Bible study and Dan put the second one together after he left. It was a little bit of an adventure because the second one was missing two of the holes to put on the legs...

Wednesday:
Have I mentioned lately that we have some amazing people in our lives? Well if not, we sure do! The past few weeks we have only been able to see Jaime and Jason a few times between Jillian being in the hospital and Jaime directing a musical, our lives have been full. Thankfully we were able to get together again for dinner the week. I love just hanging out with them. It is a good recharge.
They brought Jillian a gift... a circus tent! Seams they did some Ikea shopping too. She thought it was cool. She was very attached to mommy though. She is in a I must be near my mom stage. Like mom can't pee without me not being so happy stage. I love that she loves me so much and that I am a safety net... but girl sometimes mommy has to pee!

While Jillian might be delayed in speech and gross motor (no words and not walking yet at 16 1/2 months), she has amazing fine motor skills and her favorite things involve fine motor. She loves to color and insists on holding the crayon like we hold a pencil. She also loves to put coins in her piggy bank. Last night she sat down with the bag of coins that she got from her Easter eggs and put all of them in her piggy bank... one by one. She sat there for over a half hour. When she finished her bag from Easter she signed "all done" after being prompted. I then showed her the sign for "more" and she did it with her pointer fingers. I love that she is starting to do signs sometimes.