The little blessings

A few weeks ago I was struggling with a few things emotionally (from time to time I have a hard day... it happens). I prayed that God showed me his hand. That He would show me how he is working in my life. It was not that I was doubting that He was working, I just knew I was not seeing His work and I needed to refocus my eyes.
He has answered my prayer by opening my eyes. Here are some of the places:
1. Jilli needed a new bed (I will write a post about this soon). Beds for kids with special needs are expensive! Recently the exact bed (out of all of the many special needs out there) came on Zulily  at a great discount!
2. I got time to talk to Karla Hobson. She has been like a second mom to me for a long time. We don't get to talk as much as we use to however it is amazing to have time to catch up.
3. Dealing with switching over insurance for Jilli was easier then I was expecting. Brent was done with his job 2 Fridays ago and so was his insurance. His new insurance does not start until September 1st. In the mean time Jilli will only have her state insurance. I called to get that switched over and it was easy.
4. I was offered and accepted a new job. I will be teaching 4k with the elkhorn school district for this school year. I will be working part time teaching kiddos and also have more time for jilli and her needs. This sounds like a great balance. I am so excited. There is a lot of work between now and school starting but I'm excited for the work. 

5. Jillian's new therapy place is working out great. I am seeing gains already. This morning I was SO proud of her when she looked at me and signed book. Normally she would just sign "more" and then start screaming when I could not figure out what she wanted but this morning she successfully communicated. I am so proud of all of her hard work. 

6. I am thankful for the things God is teaching me. He has reminded me to come to Him with the little things. From praying when teaching is stressful to turning to Him to thank Him for the little things. I am working hard to turn to Him not only in the big but in the little as well. The little is just as important. 

If that is not one of the cutest things I don't know what is. I love when she brings us a blanket and just wants to cuddle. 

A few updates around here... with more to come...

Well I feel like the last few weeks have been a crazy roller coaster!Here is just a little bit of what is going on at our house right now:

Jillian:
We have started to see a little bit of poop. It is still not were it should be especially after 2 suppositories and A LOT of laxatives. Her belly is softer and she is not as crabby so thankfully it is starting to work. Hopefully she will fully unclog soon. Her GI system overall has not been in a good place lately. The ebb and flow of her GI system is starting to become more and more normal for us... it is what it is... unpredictable! It is our job to help her manage the difficulties of it as best as possible.
We are in full swing of doing new therapies. Jilli seams to really like speech. We have speech homework that we are working on every day. Her speech path is thinking that Jillian has a speech motor planning disorder. She said that she is a little young to make that full diagnosis however that looks to be the treatment path we are on. Jilli does not seam to be as keen about PT. I think it is because it is physically really hard for her. For speech she is able to sit. For PT she has to move. They called this week about doing the OT eval. We are still working on finding the right time for that.
Her skills are about the same. Words come and go. Right now she is liking to make elephant sounds. She is walking more but still struggling with walking. She walks like she has had a stroke. She really struggles with moving her left leg and shows lower muscle tone on that side. She does well working around it by finding things that she can hold onto to help her walk. She is getting good at adapting for her needs.
She LOVES to read books and visit the zoo. She likes to play the human body app on mommy's iPad and to put coins in her bank. She is loving her new stroller and even fell asleep in it while I ran this week. She likes to color and will color with both hands at once. She is such a JOY in our lives.

Brent:
Brent is starting a new job on Monday! This is a hug opportunity for our family. It is closer to home, with better pay and good insurance and hopefully less stress. Brent is really excited for this opportunity. We are very grateful for this opportunity and it is a huge answer to prayer!

Dan:
Dan is getting ready to move out :( His new job is in Milwaukee so he is getting ready to move to an apartment in the Milwaukee area. It is going to be strange not having him live here. I know Jilli will miss him. Tonight we asked Jilli if she was ready to go home from Target (she was signing more... wanting more Target as we were leaving). She shook her head no. We ask her if she wanted to go home to see uncle Dan and she shook her head yes.

My Birthday

So on the 18th I turned 25! Birthdays in my family have always been a big deal and really special! This birthday was no exception.

My parents both had Friday off so my parents, Jilli and I went to the zoo! We had a lot of fun playing and looking at animals. Jillian is really starting to appreciate some of the animals and she like to listen to the sounds they make. After the zoo we stopped at BuyBuyBaby to get a parent counsel for my new Baby Jogger stroller. I really wanted a new jogging stroller for my birthday but it needed to be one that could hold little miss for a long time. This stroller goes up to 75lb! My parents got me the stroller for my birthday and Jilli/Brent got me the child's try.
After the store we went over to Southridge Mall to shop a little bit before our dinner reservations at Bucca Di Deppo. As we were walking in Dan was walking towards the door with my birthday gift... Tinkerbell and money to go spend at the Disney store. We went down to the Disney Store and shopped for a little bit before dinner.
Then we all met at Bucca's. My parents, Brent, Jilli, Dan, Seth and Mikaley all joined me for dinner. We ate a ton! After we were done eating we headed back to the Disney store (I needed a Disney fix on my birthday!)
Saturday I took a big step for me. I drove to the Wisconsin Dells (about 2 hours) to meet some of my friends. Brent and Jilli stayed home. It was amazing to catch up I picked up Brent and Jilli and drove to Kenosha. We had a great dinner with my Aunt Sandi, Uncle Todd and Cheese at my parent's house. It was a really really relaxing night.
Sunday some people we knew from Navs in collage came over to the house and we talked about Navs20.
In the evening we met my parents and grandma at Bigfoot Beach State park and played and went for a walk. We then went over to Culvers and had dinner and then mom and I picked up a DQ cake and we went back to our house and had cake to celebrate mine and my grandmother's birthday.
It was a good weekend. Thank you to everyone who celebrated with me!

Jilli got a Mold-A-Rama of an elephant

This giraffe was determined!

Riding on grandpa to see the elephants

We sat at the pope's table

Jilli and Mikaley are buddies!

FOOD!

We take great selfies dont we!

Happy Birthday Grandma!

Oh poop!!!

A few weeks ago we were driving and Brent and I were talking about how jilli was doing "good" for her. (Relative to other things that have gone on in her life) as we were having this conversation in a trafic jam by Mayfair, Jillian starts choking on her own saliva and gasps. I'm screaming at her to breath, we pull off and make sure she is ok. 

Fast forward a few weeks and yesterday I was talking with my boss how Jillian's GI system is off. 

Her med port has popped open multiple times recently causing bile to leak everywhere and a formula mess. 

Yesterday was a huge mess. We woke up to a HUGE mess of formula and green  bile. It really dehydrated her. She even fell asleep getting washed off. 

Add to it one day of poop in over a week. 

This morning Jillian's stomach drainage bag was dark green and there was around 3oz of it. 

I called GI. They said that they think she is really backed up casing all of the bile to come out her g port. 

We are upping her laxative from 3ml once a day to 4ml twice a day. They also wanted us to give her a suppository. 

So here a sit... With a little girl on my lap..who got a supposity over an hour ago... And has only had a tiny dry poop. 

Just like that her GI track turns on us all and stoops working effectively. Here is to hoping for poop! 

A BIG thanks! and New PT

We are hugely thankful for some awesome men this weekend! When we bought our house the inspector told us that the decks were in ok shape and could use a board here and there replaced. Fast forward two years and that was farther from the case. Our back deck is large and attached to our house 1/2 a story off the ground (we have a split level house). It had no supports in the middle on the deck and the posts of the deck were not put in well. This was causing the deck to sag and wobble. Our front deck was just a ticking time bomb for someone to fall threw. By the landing to get into our house they only put down a piece of plywood and covered it with indoor-outdoor carpeting. It was sagging and not in good shape. Additionally we had a chicken wire fence between us and our neighbors that was rather beat up from a tree falling on it. All of the equated to some large safety concerns around our home.
Friday night Dan's dad and younger brother came down and spent the night at our house. Early Saturday morning everyone got up and Brent, Dan, Dan's dad and brother, and my dad all got to work on all three projects! By Sunday afternoon everything was done and we now have two safe decks and a new fence. I am super grateful for everyone's hard work and for giving up their time to help us.
While they were working Saturday morning Jilli and I went to my cousin's bridal shower and once we came home all Jilli wanted to do was sit in a chair and watch them work. It was like she was the little foreman on the project. It was adorable.

The guys put in the second row of posts

New PT:
Monday was a busy day! In the morning Jilli and I worked on laundry. Jillian had an 11:45 PT eval at New Berlin Clinic. We talked with the therapists and they did an assessment of her gross motor skills. They diagnosed Jilli with low muscle tone in her legs. Her joints are also able to rotate and move more then they should. Jilli is going to start PT once a week for 45min. We are doing to do PT and speech back on Mondays so we don't have to drive to Elkhorn twice.

Yesterday it worked out for the eval though that we had to be at the clinic from 11:45-12:30 and 4:30 to 5:15. This left a big gap in the middle of the day that we were not sure what we were going to do. Seth said that we could come and visit them at Yerke's Observatory in Willem's Bay to see where he has been working this summer. Jilli and I got a personal tour of the building and got to see where they are living. It was REALLY cool! We were able to stand in a room Einstein once stood in. We got to see really interesting parts of an old building. I loved it. Jilli was more or less along for the ride but she loved listening to her voice echo in the domes. Thanks Seth and Mikaley for giving us a personal tour!

Jilli and Mikaley looking at the Big Telescope!

They still use the same control panel

Jillian walking around with her feeding tube backpack (I wonder how many people have tube fed in the observatory....). She liked to hear the echo 

We were looking at old books. Jilli's eyes were big at the sight of a room with so many books

A picture of Albert Einstein in the observatory.

 

Therapy Change

So we have made a large change in Jillian's care.
For the past year-ish we have been working off and on with Birth to 3. When we started with them last year they said that they would come see Jillian once every 3 months. After one visit I decided to unenroll her because at that rate of infrequency she is taking up more resources then serivces she was getting.
We re-enrolled a few months ago because Jillian was over one and did not have any words yet. They did a reassessment and said they would come to do therapy once a month. Jillian was not showing progress.
At Jillian's 18mo check up her doctor expressed that she would like to try someplace else for Jillian's therapy.
She made a referral to New Berlin Therapies for speech, OT and PT.
So far we have had the speech eval (we are doing the PT eval on Monday). Here are the testing results:
Receptive Language: Using the PLSS-5 Jillian received a raw score of 18. The standard score (average) is 77. This puts her in the 6th percentile.
Expressive Language: Using the PLS-5 Jillian received a raw score of 21. The standard score (average) is 85. That puts her at the 16th percentile.

Jillian is going to start speech therapy once a week for 45min each time. We will see what the PT eval shows.

Jilli has been getting more frustrated lately with the delays that she has. She wants to be able to communicate with us more. We have been seeing more screaming when she can't explain to us when she wants. Sadly she is also currently in a holding pattern with learning more signs. We have been teaching her more however she has not been retaining them and is struggling with using the signs she already has.

Some of her struggles right now can be attributed to tummy stuff. We switched her from Elecare to Elecare Jr formula about a month ago and it is really hard on her body when switching foods. (this has happened when we started fortifying her breast milk, when we switched from breast milk to Elecare...) Her body just does not make the switch well and it takes a while (months) for her body to adjust. During the adjustment she gets really constipated, has a lot of gas, and a lot of noticeable pain. We needed to make the switch to Elecare Jr because it has a different mixture of nutrients then infant Elecare and since she is getting older she needs different things. Her body will eventually adjust and level out again. We have been in the process of bumping up her rate from 56ml/hr to 61ml/hr, however we are stuck at 58ml/hr right now. I am not sure why I thought we could switch formulas and bump up her rate at the same time. Her tummy is too uncomfortable to bump her any more per hour. We will wait to bump her up any more until things have evened out. Some days we are leaving her on for a little while longer so she gets a little closer to the same total volume as running at a rate of 61ml/hr.

Door County 2014

A deer eating in Peninsula State park

Daddy and Jilli looking at the lake close to sunset

This guy was firing off cannons from the deck we watched the forth of July parade from. It was loud! 

Me and Jilli at the parade. The parade in Bailey's Harbor this year was LONG and very spread apart. We stopped watching and went and got our pulled pork sandwiches, corn and yummy desserts.  

Jilli showed off her walking skills while waiting for more floats

Jilli helped Mikaley and Seth play cards.

The guys around the fire

Jilli in her stroller before the fire works. We had to point her in the correct direction of the fire works because with her low tone hearing delay she could not hear them. She ended up falling asleep in my arms 1/2 way through them.

Jilli playing grandpa's mandolin. She LOVED it! She was very good at strumming 

She figured out where to put her hands all by herself.

 

Jillian loved swinging. We stopped at multiple parks to swing

Look at how happy swing girl is! We went to this park (in Sister Bay) after going to dinner with Tim and Jenny at the Sister Bay Bowl. I had an amazing steak! The funny part... this really nice steak restaurant is attached to a bowling ally. Good food and good company! 

As much as Jilli loves swings, she dislikes slides!

She liked crawling around on the playground

This playground looks like a pirate ship. She was giving grandpa kisses between the slats!

Daddy got in on the kisses too!

Mommy tried taking Jilli down the slide... did not help... she still does not like slides

She likes picking up wood chips... the trick is to get her to not put them in her mouth

We went for a hike at Peninsula State Park. The bugs were bad and Jilli needed a nap. I had her in the Moby wrap (which she normally loves) however this was the look on her face for a good portion of the walk. On the way back to the car she fell asleep

Jilli and mommy reading a history sign at the park

Family picture with a not so happy girl

Grandpa hanging out with Jilli. She was sad.

Grandpa took Jilli a little way up the look out tower

I don't like to climb the tower but everyone else did.

Jilli swinging at the swings at Aqua Land

Jilli and my cousin Andrew swinging together.

Jillian played the mandolin around the fire

Brent building the fire

Swinging at a park in Stergon Bay. That is a really nice park by the beach

Before we could head to Door County we had to take the car for an oil change... Jilli worked on math :)

Jilli blowing kisses on the beach. This picture is rather ironic. With Jillian's tube we don't bring her into natural bodies of water because of the bacteria that could in in the hole in her tummy and make her sick.

Jillian coloring at one of my favorite restaurants, Julies! I love their honey glazed pork chops with a door county cherry topping  

Jilli and mommy on the trolly ride back to our car from the parade. We had to park over a mile away. We walked it to get to the parade but were smart and took the cramped ride on a trolly back to the car

Jillian standing outside of the Pioneer Store. Look at her cute feeding tube backpack! It is cute/funny/sad the comments we get about it while in public. Outside of this store someone complimented us for having her on a leash...   

The cool people went for a go-cart ride! Grandma and Jilli watched!

We went to Orchard County Winery to buy some wine. Jillian decided she NEEDED to sit in this chair while we shopped.  

Jillian and daddy went into the pool for a late swim. It was too cold for me.

Jillian warming up after her swim

Jillian on a merry go round! She loved it... Have feeding tube... will travel!