I worked at a daycare and was the head teacher in their school age program. That summer taught me a lot. We took a field trip EVERY day of the summer and thus spent a lot of time in a full sized van. With lots of van time came road trip songs. We listened to a lot of Putumayo CDs. My class fell in love with the song "Three Little Birds." They were cute singing "Every little thing is gonna be alright."
Last night as I was driving back from Children's that song kept playing in my head and it put a smile on my face. Through the crazy of yesterday I just kept smiling. I think part of it was that I had the option to smile or cry and I just did not feel like crying! I choose to find joy in Him even in the crazy.
As Jilli and I left work it started to snow. Parents were coming in to 4K to pick up their kids and talking about how the roads were a little slippery already. Not what I wanted to hear as I was getting on the road to make an hour drive and I had an hour and 15min to get there. We got in the car, turned up the music and drove. Traffic was good and we made it up there in good time.
I looked at valet parking the car because it was so cold (-25 windchill), however I had a bunch of Tubie Friends to take in with me and I knew it was going to take me a little while to unload that car. As I pulled into the parking garage I hit the curb with my tire as I made the 90 degree turn into the parking structure. As I drove up the parking structure I could hear the air coming out of my tire. I got a parking spot on the floor with the skywalk. I got out of the car and yup, my tire was completely flat! There was nothing that I could do about it right then. We had 10min to get to our appointment on the 7th floor. Also, I know I am not strong enough to change my tire. I called Brent as I was walking into Children's and told him what happened and that I would need help. In December Brent took a job in Milwaukee by Miller Park so he is close to Children's. He told me to let him know when our appointment was finishing and he would come over and help me.
We went into our appointment. The normal people that sit at the front desk were not there and they were training someone new. They were training the new girl on how to do vitals. We do some things differently with Jilli so I was trying not to throw her off. Like even though she is over 2 now we still do her weight without clothes to get an accurate measurement. Jilli gains weight so slowly that her having clothes on does matter in trying to figure out if our current plan is working. The exciting thing is that Jilli is over 10kg now! We have only been working at that since she was 10mo old. She is right around 23lb. She is also at 32in for height!
"The first year of life is a time of astonishing change during which babies, on average, grow 10 inches (25 centimeters) in length and triple their birth weights." -Kids health
Jillian was born at 8lb 11oz and 22in long. We are getting there! Slowly but surely we are getting there.
Jillian was such a good girl for her blood pressure. She normally hates getting her blood pressure taken however she has been really into using her Doc check up center lately and taking her babies blood pressure. She gave them an arm and sat there nicely. You could tell she did not love it but she did not complain. They gave her some stickers for doing vitals so nicely. She was really excited!
We then went to the room. We brought with us 15 Tubie Friends from a donation. I had called GI last week and told them the animals were coming and they were so excited! They already had kiddos picked out for them to go to. It is so awesome to be a part of an organization that brings smile to so many people. I love making Tubie Friends!
Lisa came in and talked with us. I don't think I have said enough times how AMAZING the GI staff is. My kid is genuinely loved while we are there. They remember the really sick little baby I brought in the first time and the celebrate with us all of her accomplishments. It is like a little family there and it makes it a lot easier when we have to make decisions and discuss things that are hard because I know how much they LOVE my kid.
Sara our awesome dietitian came in. She has been helping us with an insurance issue with getting all of the formula we need for a month. (we need 12.2 cans a for 30 days. They will only give us 12 cans a month no matter how may days are in the month because apparently the state rounds down...) Sara has been really helpful in trying to make this work for us and I really appreciate that a lot! She said that Jillian made gains and for now we are going to leave her at the same rate. Getting Jillian to gain an appropriate amount is tricky so if we are seeing gains and not loss we are going to keep with that. I love how hard our dietitians have worked to try to figure out the Jillian balance and not just expect her to react like everyone else. They always ask me too if Jillian has made it to the next size of clothing yet... not yet! Maybe someday she will wear 18mo clothes, right now I am just happy when I find 12mo clothes that work!
Then our dr. came in. We talked a little bit and then talked about Jillian's most recent aspiration pneumonia. This is the first time we believe she aspirated from the top down instead of from the bottom up. The dr said that we needed to go back to see a dr. in the motility clinic to talk about options again. The topic of a fundo came back up again. I always feel like I am kicked in the heart when that discussion starts again. We don't feel like the fundo is the best option for her but I understand that we have to have the discussion because she keeps ending up with pneumonia (even though a fundo will do nothing for top down aspirations). We talked about how we are in the mix of doing genetic testing and how if she has a muscle disorder a fundo is not recommended. It was decided that we would go to the motility doctor now but that we would not do anything until the genetics stuff has come back. This has made the genetic testing even more important. There have been times I have not pushed to find out the "what is this" because we did not know if having a name of it would change anything however it is now showing that it will. It will be a large determining factor in a VERY large surgery. So please join us in praying the the genetic testing comes back with answers. We know there is something going on we just need to know what. Genetics told us we have a 30% chance of finding something in this round of testing. We also have not heard back from insurance yet about if they will pay for the test. The test is now looking even more important so if insurance comes back and says they will not pay I think we will need to figure out a way to pay for it because it is becoming more important.
We also talked about Jillian's motility meds. Jillian cycles cypro and erythro. They both have their pros and cons. Cypro is starting to be more of an issue. When you use a medication for its side effects you also get other side effects with it. In the past it has mainly effected her sleep however this cycle it has really effected her behavior. I know she is 2 and 2 years olds can be well... two year olds but it should not be a night and day difference in behavior between the two meds. Her daycare teachers can tell the difference and so can therapy. She is much more impulsive and has a lot more melt downs. She goes from the little girl who barely gets into trouble at school to the girl who continually gets into trouble. We decided that since it is a GI motility med we are going to let the GI motility doctor figure it out (they are the ones who prescribed it)
When they first said motility doctor my heart sank because the doctor we have seen in that past frustrates me a lot. We have had some really frustrating interactions. I am sure some people love him as a doctor but he and I don't mesh well and that effects care for Jillian.
When we worked with him in the past he had a fellow that we liked a lot. I thought she really listened and understood what we were saying. I respect her a lot. Well they told us that she is now practicing in the motility clinic as a doctor! We are able to see her! This made the situation a lot better because I feel like I have more of a voice with her and I feel like she wants the best for Jillian and is willing to work as a team to do accomplish that. So we see her in April.
We will follow up with our normal GI doctor in May.
Then we had to deal with the tire. Brent came to Children's and put the tire on for me! We also had the blessing that the car that had been next to me left so the spot next to me was open so Brent could park there and it gave us a little extra room to change the tire. I am SO grateful for Brent's help! He put the spare on, it looked good, I drove a few feet and the spare went flat! Thankfully Brent had stopped on the way and bought a tire pump on the way so we were able to blow up the spare.
I then drove to Kenosha. Poor Jilli was having belly pain in the back seat and spent the car ride home crying off and on. We made it to my parent's house. Once my mom got done with work she met me at Sam's Club. I can not say enough about how awesome Sam's Club's tire department is! They took care of my tire while we shopped. It took about a half hour. The tire had a large gash in it so they replaced the tire. I would totally recommend Sam's Club tire! They made a the situation a lot better.
My parent's had plans to bring dinner over to my aunt's house so Brent, Jilli and I went to dinner the 3 of us. It was a nice relaxing way to end a crazy day!
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| Tubie Friends to go to Children's Hospital of Wisconsin. |
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| Brent changing my tire |
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| Brent fixing a crayon at dinner with medical tape. I accidentally broke the crayon and Jilli was sad. Oh the life fixes you can make when you carry a large bag of medical supplies with you everywhere! |
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