Brown and Pink Polka Dots

Saturday, October 31, 2015

Halloween Party

Last night we went to a Halloween party at New Berlin Therapies. We love New Berlin Therapies! We go to their Elkhorn office which is small and really personal. Everyone knows Jillian and the families get to know each other too. I love Jillian's therapists and they care about her so much. Right now we are struggling to get insurance to pay for PT again because she still does not have a diagnosis and her PT is working hard to make sure she can still get the PT she needs.

When Jilli found out they were having a Halloween party she was really excited!

Yesterday that is all she talked about all day. She kept wanting to leave to go to the party. We stopped at Target on the way there to pick up a new humidifier since the base on her's broke and leaked water all over. She was not happy to be a Target (normally someplace she loves to be) because she wanted to go to the party. We met Dan and Brent at Quacker Steak for dinner. Jilli kept telling us that she needed to leave dinner and go to the party.

The party started at 6pm at the New Berlin location. We had never been to that location before. It is their main clinic so it is a lot bigger then the Elkhorn clinic. It was all decorated for Halloween. Jillian was in aw of the big gym. She found her therapists and got all excited! They went into the second gym where there was a dance party. It was a little loud in there so it did not take long before she wanted to head to the other gym. When we got home we asked her about the music and she told us it made her ears sick, I guess she is not a fan of loud Miley Cyrus!
She then headed back to the big gym where they have a trampoline, swings, slides, ball pit and tunnels. She could not decide what she wanted to do next. She ended up grabbing her PT's hand dragging her through the tunnels and to the ball pit.
After a little bit you could hear Jillian breathe so we took her out into the hallway and she found this fun wall with things to do. She enjoyed playing with it with other kiddos. There was another little girl who Jilli enjoyed playing with. She was so tall compared to Jilli, the mom asked how old Jilli was and it turns out this little one is 6mo younger then Jilli. I know by the numbers that Jilli is short but it does not hit you until she is standing next to someone younger then her who is a lot taller. We were all laughing.
Then Jilli headed back into the big gym for a little bit and played with her therapists. Then it was time to head home.

Jilli had so much fun last night! It was great to have a Halloween event that did not involve trick or treating or candy. They did have pizza but it was in a side room and not allowed in the gyms; Jilli never knew it was there. Parents were all understanding that all of our kids had special needs and where not annoyed when kids struggled to ask for something, or when they were doing things to meet their sensory needs. It was a safe place for all of our kids to just be them. All of our kids are a little bit different. It was a great family night and we loved it. Thank you New Berlin Therapies for a great family night!

Jillian loved this wall!

Jillian's therapist helping her in the ball pit

Walking down the stairs with her therapist

Her therapist helping her swing

Walking from the "tree house"

Her costume

On the trampoline

In the ball pit

A bigger view of the fun wall

She LOVED the mailbox!

I was getting sleepy from all of activity in the gym!

We went back to the ball pit multiple times

The ball pit at the main clinic is a lot deeper then in Elkhorn. She kept sinking but it was good work for her!

She liked knocking on the door and inside the door was monkeys!

Sitting with Jilli while she caught her breath! She played hard, and slept the whole way home!

Thursday, October 22, 2015

Pulmonology

I'm Today we had a really good pulmonology appointment!

Jilli has gained a little weight and height!!! YEAH! Oxygen has really helped her to grow, apparently oxygen was a piece that we were missing to her growing... she needed more oxygen to grow, imagine that!

During the appointment we were able to talk about bumping her oxygen up during PT when she needs it. One of her main PT goals is working on walking up and down stairs, however this takes a lot out of her little lungs. Her O2 stats drop into the 80s when climbing stairs on oxygen so we agreed that if she is going to be doing really hard things in PT (like working on stairs) that we are going to bump up her o2 a little. Hopefully it helps!

We also came up with a plan for cold/flu season. The hope is to keep her away from people that are contagious this winter by not having her in school and making sure people who are sick stay away (yes, this is my request, if you have any contagious illness, please visit us after you are better, we would still love to see you, just can't get germs in her little body)
Since this is her first winter on oxygen at home we needed to come up with a plan for what to do when Jillian gets sick. Our guideline has always been before that if we thought she needed oxygen to take her to the ER but what now that she is on oxygen? The plan has not changed much because Jillian is on oxygen for lung muscle issues not illness in her lungs. If she is needing more then a few nebs then we need to take her to the Ped just like before and if she needs more nebs then every 4hrs then we need to go to urgent care or the ER. Even though the plan has not really changed it is good that we are all on the same page and that we made a formal plan together. They do not want us to up her oxygen when she is sick because they don't want to cover up something that could be serious.
A big thank to my little bro who came and hung out at the house today while we went to the appointment to wait for oxygen. They have been showing up anytime between 11-3pm on Thursdays which makes it tricky to plan for. I was grateful he could come help me out so I did not have to rush home from the doctor.

Also since going on oxygen we have been able to take Jillian off of her nose spray because her nose does not run all the time anymore! It is always nice to get her off meds. Oxygen has a lot less side effects then meds, if oxygen helps her this much and has helped her to get off a different med then I am so grateful for that! Oxygen has helped her SO much. I wish we had realized sooner how much she needed it and pushed for it sooner. She has only used 5 viles of neb meds since going on it (the includes when she had croup in June), I think this is a record for her since she started using a nebulizer at around 6mo old. Oxygen has helped a lot and for that I am so grateful!

We were also told we did not have to go back to pulmonology for 6 mo! Thats huge in our world too! They want to try to keep her out of the office during the worst of cold and flu season (she can't get a flu shot because she gets really sick from them... like end up in the ER not breathing well sick) so they said to just keep doing what we are doing (we are also going to up her maintenance inhaler for the winter to help keep her lungs from getting sick) and check back in the spring! YEAH!

Jilli and daddy with her bike!

She is just so cute!

She got a Halloween package in the mail from her Aunt Sandi! She is so excited!!!

My little ballerina

She was using her computer at her doctor station just like her doctor!

My little doctor!

Playdough time!

Monday, October 19, 2015

Our weekend

It was a little bit of a more laid back weekend. Dan came over Friday night for dinner and the boys had a bonfire in the backyard. Dan spent the night and we all went out for breakfast in the morning. Saturday morning we headed to my parents and hung out for a while. Seth's girlfriend Mikaley is in town right now so we all hung out together. Seth was in one of his friend's wedding so Mom, dad, Seth and Mikaley all went to the wedding. We headed to Honda of Kenosha to get my oil change. I was thankful that this time their show room was not full of balloons so I could wait inside... thankfully we could wait inside because we gave them my keys at 3:20 and my car was not done until 4:50! For an oil change I made an online appointment for. They did tell me that the last place that changed my oil broke something (my car was leaking oil after my last oil change and we brought it back to the place that did it and they claimed we were crazy) so now we need to get that fixed.
We then headed to the wake for Brent's cousin. My heart breaks for everyone! Funerals for 23 year olds is just not something you think you are going to be having. On our way home we stopped and picked up a gift for a very special friend! Brent had a head ache so we went back to my parents and he want to bed.
Sunday morning Brent had sound at church. The rest of us come out for the 10:30. Jillian loved dancing and singing! We then went to lunch with Brent's parents. After lunch we headed back to my parents and then we went over to the Kenosha Dream Playground. This is a really cool playground for kids with all different abilities. It is really nice to go to a park that Jillian can pull her wagon around with her oxygen with her. It will continue to be great for her as she gets older and uses a wheelchair. She played for a while yesterday and her playtime just wore her out! She fell asleep around 5:30 and napped until after 8. We then cuddled and she fell asleep around 10pm. She is still sleeping at 8am, playtime made her exhausted!

Princess Jillian

She put her gloves on and danced and sang the Super Why theme song

Walking with Bumpa into the park

She LOVED this swing!

Jillian got to meet Ms. Racine

Playing music

She thought the braille panel was very cool

Monday, October 12, 2015

Jillian quotes

Jillian has had a few good quotes this week:

Im never EVER going to bed again

Elephant has tail, I no tail, I have tube

Elephant pony on tail (meaning pony tail on his tail). She wanted me to take the elephant's pony tail out like I take her pony tail out

She asked me if she can wear my wedding dress when she gets married

Look, my music on (she has insisted since we got home from Disney that anytime we are in the car she needs the Disney World Cd on... im not sure what I was suppose to look at.

I NEED pirate music (soundtrack to Pirates of the Caribbean)

Somehow my 2 year old learned the word "never." This looks like:

I NEVER watch my shows (I had just turned the TV off after she watched a movie)
I NEVER go shopping (we were leaving Toys R Us and headed to the mall)
I NEVER go in kitchen (I was cooking on the stove and using the oven)
I NEVER sit chair (she wanted the chair I was sitting in)
I NEVER play toys (we were leaving for therapy, she had just been playing with toys)

Wherever my child learned to use never like this... I dislike you! Thankfully she says her statement and then she is over being upset about it. We are fortunate that she has very few meltdowns.

We also had a fun relaxing weekend. Thursday night we went out with Brent's family for dinner before grandpa headed back to Florida. Friday night we went out to dinner with my parents to celebrate their 30th wedding anniversary. I am so thankful that Jillian is so well behaved in restaurants, she just plays with toys.

Saturday morning Brent, Jilli and I went for breakfast in Lake Geneva and ran errands. Brent went into Kenosha to do sound for a wedding and Jilli and I hung out around the house. After Brent got back he worked on yard work and I worked on laundry.
Sunday morning we went to Church. Then we went to Panda Express with my brother (my parents were in Door County). Then we went over to Jerry Smith's Pumpkin Farm. Jilli liked looking at the pumpkin displays. We then ran to Toys r Us and the mall (we needed passies and a travel high chair to take to the movies) Then we took Jillian to her first movie in the movie theater. Marcus theaters have Disney movies this month on Friday, Saturdays and Sundays for $5 a person. This weekend was Little Mermaid and I have a HUGE Ariel fan in my house. She did really well in the theater, especially for only being 2 1/2. She got antsy a few times but she stayed in her seat the whole movie.
My parents were then back from Door County and we needed to drop something off at their house so we stopped there and had dinner and then headed home. It was a great weekend of family time!