Ch ch ch changes...

I feel like we are in a time of a lot of transitions right now. Corney songs about changes and different seasons have been running though my head.

So what is all the change?

As I type my baby brother is working on moving into his apartment in Ohio. This will be a big transition for our family. See I went away to collage... an hour away. Seth stayed home and went to a school in town. He now has an amazing opportunity to work on his PhD at Kent State. He will be there for the next 5 to 7 years... 7 hours away! While in many families the big sister would either shrug off her brother leaving or be happy for his departure, my brother and I have never really fought. We get annoyed with each other from time to time but growing up at our house meant that fighting with your sibling was not an option. While we were not as close while I was in high school and collage, over the past couple of years we have been getting closer. He was the one I called when our heat went out and Jillian was only around 6 weeks old and Brent was out of state. He sat here all day with me while repair men marched in and out of our cold house in February. He was someone I could always call to bail me out. While my brother will always be here for me, it will just be different now. He wont be here to do crazy things like spend his birthday in a hospital room with Jillian (his 21st, none the less) or go to moves I dont want to see at late hours with Brent. It will be an adjustment. I am so happy and excited for him. This will be such a good opportunity and he is SO smart and I am SO proud of him.

In the spirit of moving, last weekend a moving truck showed up at our house. No, we are not crazy enough to move in the middle of our crazy (although Brent has suggested it and I give him a crazy look), Dan moved out last weekend. Dan moved in last June, for a month of two. He was in the process of finding a new job and his lease was up on his apartment and he did not want to sign a new lease if he was not sure where his new job would be. His job hunt took longer then he planned and in April of this year he got a new job in Milwaukee. He has since been commuting an hour each way to work. He found a place in Milwaukee much closer to his work (and close to Children's) that he will be sharing with his sister. It was hard to watch that moving truck leave our house though. Over the last 14 months we became an odd little family. He moved in when Jillian was 6 months old and had a feeding tube down her nose (yes, we do measure time at our house by what type of feeding tube Jillian had). A lot had changed over that time. He lived with us for the majority of Jillian's life so far. He could have just kept himself hidden downstairs (the first time Dan lived with us, in collage, Dan and I did not really talk or get to know each other until right before he moved out, in fact I did not even have his phone number most of the time he lived with us the first time), however he dove head first into our crazy and if Brent was not home he would help me with Jillian stuff. He made formula a few times and knew how to get her meds ready. It did not creep him out that we leave drainage bags to dry from our cabinets (although his rule was that he would not wash Jillian dishes... I don't blame him, they all smell like Elecare Jr or are syringes or bile drainage bags). He fell in love with our little girl in a way that I am sure he did not think he would. Those two have a special bond. Some nights she would just want him instead of her boring old parents. It is strange now just texting Brent on the way home from work to see what time I should plan dinner. It is an adjustment. I am sure most people would see having an extra person moving out of your house as getting things back to normal, but having him here became our normal, and now this is odd.

Brent is in the full swing of his new job. He is loving it and is much less stressed at night, for that I am grateful! He also gets home at the same time each night and does not have to work nearly as much at home. He is also adjusting to a new med he is on for debilitating head aches. His doctor was trying to do nerve blocks in his neck to help with these awful head aches and hand tremors that started about 6 months ago however the shots were making him very sick. The new med is helping a lot more with the head aches however it has side affects itself (but not nearly as bad as the shots). Brent has never been a person to sleep much and normally would go to bed sometime after midnight, however on this new med his body needs more sleep. For him that is a lifestyle change that he is still adapting to.

I am in full swing of getting ready to start my new position teaching 4K in the fall. I am really excited for this new opportunity. With starting anything new, there is a lot to do. As per normal me, I have a to-do list running that I keep remembering little things that still need to get done. Being a teacher, the time leading up to a new school year is always the busiest. My type A personality kicks in and I drive to do my best. I am excited to get my classroom set up and meet my kids. I am excited for the opportunities that this new position will give our family (I will be working 5 half days). Hopefully I get most of my to-do list done in the next two weeks. School starts Sept. 2nd, ready or not! :)

Jillian is about to have a month with A LOT of appointments. I was working on organizing calendars today and she (along with me) is going to be one busy girl! We are moving her PT and speech time in September to right after I am done teaching. We are still trying to find time to do her OT eval and will probably be adding OT to the therapy mix in the fall (at least that is what her PT has hinted at). Next week we go for her genetics follow up. I am trying to remain neutral about the appointment. I am hopeful that all of her test results are back and that we can continue to move forward with our plan. That has kinda been stagnant for months again and I just can't think about that or I get annoyed. In September we also meet with the aerodigestive clinic for the first time. I am excited to see how that all works and hopeful for some better coordination between clinics. Jillian also sees audiology to have her hearing tested again. It was tested last year and her speech path would like it tested again so we know how her hearing is functioning now. I am assuming it is close to last year. She still does not react to low tones (bass guitar, fireworks, ect). September also brings a tube change. Her last one went so smoothly and I am hoping for that again. It also brings the Children's Hospital walk/run and my cousin's wedding. Hopefully Jillian will have as much fun dancing at this cousin's wedding as she did my other cousin's wedding last weekend (I still need to get to blogging about going to the wedding and all the fun Jilli had... soon hopefully!). September will be busy for our little girl but hopefully it will be a good month for her. She has still been struggling a lot with poop and that makes challenges for the rest of her system. We are seeing gains in her speech and that makes me so happy. It brought tears to my eyes the first time she signed "book" a week ago. She normally just signs more and we have to guess out of everything around her what she wants more of so for her to sign for an actual object was huge. We are working hard on the sign for "help" so she has a way of communicating that she needs help other then screaming. She is really struggling with it because her hands do not cooperate with her and most of the time she will just start waving her hands around knowing she needs to do something with them however she struggles with making a fist. It is rather cute actually... until she starts screaming... lol. We are blessed with this little girl and her amazing smile and great attitude. I love her so much and am so proud of her.
Jillian's feeding pump also got changed out last week. I had heard that some med supply companies change out feeding pumps once a year for service however we had never heard anything from our med supply company about this. That was until I got a call Friday morning that they were coming Friday afternoon to switch out her pump. This caused a little bit of panic in me because we were going out of town on Saturday and what if the new pump did not work right? They also told me they would not be delivering it to me until after 4pm on a Friday... A Friday that I also had a ton of things to get done and had the internet guy coming over in the morning for several hours to fix our satellite and I NEEDED to go to the store before we could go out of town, thus making it an already crazy Friday. On top of that med supply was suppose to have delivered this month's supplies on Wednesday however they did not have bags for the pump in and had to wait until they got their delivery before they could bring us ours however this cut it very close to when we were about to run out of formula... that they don't sell in stores. So when they called saying they were switching out her pump it almost put me over the top, however I pulled myself together, took a 19mo old to the store during her nap time, and made it all work! So, we have a new pump (same brand). It has a few quirks but thankfully none of them caused for any more headache then getting the pump exchanged was.    

So, those are our changes right now. Rather overwhelming some days, but I am doing my best to keep it all together. For every season...

This was the last night that we all spent under the same roof while Dan lived here. We ate yummy food and played video games. See Jilli joined in on the fun too!

Uncle Seth putting his sock on Jilli. I don't think that is the fashionable shoe she is looking for

Dan's moving truck

Jilli had to check out the bathrooms at Dan's new place. She loved the big bathtubs so much she did not want to leave.

The family at Kopps. Mikaley taught Jillian how to put spoons on her nose. After she apologized for teaching her how to use a spoon the wrong way... I said it was just fine, she does not need a spoon to put things in her mouth so why not put them on her nose!

This picture means a lot to me. I know it means nothing to most of the rest of the world, but is truly special to me.

It was my dad's birthday on Monday. We went to dinner at Fred's. His kids got him "Its a Small World" dolls. He LOVES that ride!

Jilli loves the dolls too!

She put on Brent's slippers. She has a thing for shoes! She looks so tall in this picture. It is funny that the night before she was told that she could not go on ANY of the rides (with me) at the carnival in Lake Geneva. Apparently you have to be at least 36inches to ride the merry go round or small train with a parent and she is not even close to that! 

This is a waffle. This is a waffle my husband made for me. This is a waffle that my husband made for me using the recipe they use for waffles at Disney World (what I eat for breakfast daily there) because he knew how happy Disney World makes me and he knows we probably can't afford to go for several more years and he wanted me to have some Disney magic at home!