Changes at the Upton house

You know when stuff is changing and you are in the midst of change and it does not really hit you and then you realize the changes and it seams strange... exciting... overwhelming... and so many other things all at once? Yea... thats how I feel today!

This week is the last week of school in Elkhorn, Friday is the last day of our school year. Sitting here on Sunday night it feels like the year has flown by and it is crazy to think that this is the last week with my kiddos. Part of the gift of teaching 4K means I only have 12 students, so during the school year I have had the gift of getting to know them and teach them, and being a mom that is a privilege that I don't take lightly.
However, June 5th wont just be my last day of the school year... it will be my last day teaching.... for now. Brent and I have made the decision that I will stay home next school year. It is a decision that we have been debating for months and one that has been made with lots of prayer and thought but what we feel is best for our family, an most importantly Jillian. Maybe in the few years I will go back to teaching, but for now my job is to take care of my little girl.
There are multiple reasons for this decision but one of the main reasons is Jillian's health. This winter was hard on her. She was in the ER or urgent care at least once a month from October-Febuary. We are hoping that by keeping her home next winter that she will catch less of the bugs going around because she will have less contact with kids. It is also hard to need to take off that much when you are a teacher, between Brent, my parent's and myself we made it work but it was a hard juggle. This will help with the stress of who is going to stay home with Jillian when she is sick.
It has been odd for me packing up my classroom. It is such a strange feeling, but I know this is best for my family; God has definitely pointed us in this direction and has been very clear even when I have wavered.
So, since I wont be working next September... we are going to Disney World! Crazy... I know, but an opportunity that we cant pass up. We got an AMAZING deal on each part of the trip, and honestly it still feels surreal. Disney is my happy place. Jillian has been asking for a while now to got to "Gikie's House" (Mickey's House). Her favorite movie in the world is the Disney Sing Along Songs were they go to Disney Land. We need a vacation, and the opportunity presented itself. We are SO excited. Jillian caught on pretty quick to what we are talking about and if you ask her who's house she is going to she will tell you and get very excited! It will be a very different trip then I have ever taken, but I am excited to get to see it through her eyes. Now to figure out all of the logistics, but even those are falling together better then I could have even imagined.

Another change I just found out in a letter. We did not grab the mail yesterday, so I just grabbed it tonight and found out that Jillian's genetics doctor is leaving Children's. There have now been multiple doctors from the genetics department that have left in the past few months. I am worried about what this will mean for her genetic testing and the timeline of the testing. I am trying hard tonight to remember that God has perfect timing, however I would be lying if I did not say that I am really struggling with this tonight. We finally got approved to do this test and then the really smart doctors who are needed to do the test leave. This is not a test we can have done just anywhere, and it is an expensive test, so we are going to just need to wait it out here, but tonight this feels like a low blow. I did look to see tonight and the insurance company has been billed for the genetic testing, and it is still pending payment. The insurance company came back and asked us for more information and I filled that out so now we sit and wait to see if they will pay.
A few people have asked if we have heard anymore about her sleep study, we have not. I am really hopeful that I hear more this week. Really, really hopeful!
Another thing I am excited for this week is a dinner for the team captains for the Children's walk. I am really excited to go hear more about the walk this year!  

So that is the update at the Upton house right now... now to get ready for the last week of school!

This house has Mickey Mouse on it. It is my mom's hat... she is was so excited to put it on!

We took Minnie Mouse to the grocery store!

We were waiting for oxygen delivery the other day and Jilli fell asleep on the floor while we waited :)

Little Red Car

A few weeks back my mom bought a Little Tikes Cozy Coupe from a family at church. We had been looking for one because Jillian loves sitting in the ones at daycare so much and it is good for working on her leg muscles (its funny how when you are a teacher and a special needs mom you look at toys not from their "cool" factor but by what goals can this help her practice) Jillian's last day at daycare is June 5th, so I wanted to have something at home like a little car for her to use outside this summer and we were blessed to find a family that was selling one in amazing shape.
Every time we have gone to use her car it has been rainy or something else got in the way so tonight was her first time to get to play in her car. She was excited!
She is able to move it backwards a couple of feet but can not move it forwards so her daddy pushed her up and down our driveway while carrying her oxygen. It was so sweet to watch and she was so happy!
I'm looking at the trailer they sell for the cozy coupe to see if it would be able to carry her oxygen tank. Its all about adaptation!
Since we came inside (the bugs came out) Jilli has insisted on playing Dulops with daddy (one of her favorite things!).  So they are sitting on the floor together building as princess castle.
So here are some pics of our adventure (yes I went picture crazy!) 

Look at that great daddy!

Watch out word... Jillian is driving!

Car.... check... oxygen... check... cute monkey stickers... check... cute girl.... Oh yeah!

She is getting the hang of this... no feet... one hand... head out the window.... all she needs is a cell phone :)

A great daddy holding his little girl's oxygen tank so she can have fun... one proud mommy!

Watch out! I'm coming though!

As I was taking these pictures I was thinking how loud brent's shorts are... they were part of his Christmas pajamas... just imagine those with an ugly Christmas shirt!

Our little patch of cement

We have these pretty purple wild flowers in our front yard that are coming up!

Jilli and her daddy

Headed back to her car

We told her she could only take one more trip up the driveway...

Eventually she just put her feet up and rode that way

Brent told her to turn off her car. She turned the key

She was very huggy with daddy once we got inside

Daddy and Jilli playing Duplos

In other exciting news... I am SO proud of the parents and kids at my school. They raised $400 in a coin war (and yes most of the money did come in coins) for the Children's Hospital of Wisconsin Walk that we are doing. I was blown away and so excited!

Date night

This is a story of thank you!

Yesterday Brent and I went on a date for our 6th wedding anniversary. Its no big surprise that Brent and I rarely go out the two of us. We trust a super super small select group of people with watching Jilli. Its not like a normal two year old. There are a lot of different things that someone needs to know to take care of Jillian and it is not a quick explanation and a person has to prove to me that they can do it before I will leave her with someone. (We do qualify for respite care... we are just on a 7year wait list for our county before we will ever see respite care... great program.... not enough funding)
We also rather like spending time with our kid! I would rather have her around then not around! She is really well behaved in public and we don't have problems taking her to sit down restaurants with us (she sits and plays wile we eat) so for us it is not a big deal to take her with us everywhere. It feels odd to me to not have her around.
So for us going out it is a big deal.
We went to see Tomorrowland (our first movie out since she was born). Let me tell you... that is a great movie. I loved it! Brent really liked it. The story is good and my favorite thing is all the little Disney hints in there. I am a HUGE Disney history fan. This movie has a lot of little hints to Disney history that made me smile. Now you don't have to love Disney history to love the movie, Brent liked it and he puts up with my Disney history nerdness but he liked the movie without knowing the Disney history stuff. I would recommend that it is for kids about 8 and up. Not that there is really anything "bad" for kids younger then that I just don't see it holding their interest as well.
What I liked best was that it was a multidimensional movie, I could not tell you exactly how it was going to go from point a to point b, and part of that is because going in the previews don't give you much at a hint of a story line. I have also heard people worried that it is a si-fi movie, and it is not. I know it boast the title Tomorrowland but it has a lot less spaceage stuff then you would think. I would suggest seeing it.
After the movie we went to Olive Garden for dinner. It was yummy! I love tiramisu! Then we went back to be with our Jillian. It was nice though having adult conversation during dinner without a crayon in my hand.

I want to give a huge THANK YOU to everyone who helped to make this happen. To my parents for watching Jillian for us. To a comity at church that gave us the gift card for the movie and dinner, with a note telling us to enjoy some us time. Thank you so much. Brent and I were both holding back tears as we read the note and discovered what was inside. It touched us and made us smile. We are so thankful for your kind actions. It was the PERFECT gift to us at the PERFECT time. Thank you!




ps: a few people have been asking about Jillian's sleep study results. I got an email with the blood work results from her test (they wake her up my pricking her finger to get a blood gas) and some of the numbers were off but I will not know what that means until I hear from someone. They told us it would be at least a week from the time of the test until we hear anything so the earliest we will hear anything would be tomorrow but probably more likely it will still be a few days. Hopeful it is soon though! As always, prayers for good communications between us and her medical team are always appreciated!     
She also did really start walking like normal today. It slowly improved over the weekend and now she is walking more like herself again. 

Sleep Study and first real ouch

Tuesday night we had the fun of getting to sleep at Children's for Jillian's sleep study!

When we did Jillian's 24hr pulse ox test a few weeks back the doctor did not like something during the night and ordered a sleep study to be done.
Tuesday we met Brent for dinner in New Berlin (I had a mac and cheese burger that was amazing!) and then Jillian and I headed over to the New Berlin Children's clinic. We checked in around 7pm. They hooked Jillian up to everything a little after 8pm, and she finally fell asleep just before 10pm. She did fine with them putting all of the probes on her head but she flipped out when they put the pulse ox on her toe and the oxygen cannula in her nose.  I just shook my head! Those are "normal" things in her world.
She woke up around 11:30 and cried for quite a while. Got back to sleep and then I woke up around 1:30 to them moving Olaf off of her face. Up at 2am to fill her milk and then up with her again at some point before 5am. I also woke up at some point during that time period to them coming in to do something.  I got up at 5am and at 5:30 they woke her put by doing a prick on her finger to get blood for a blood gas test. We then got dressed and ready to go and we were out the door before 6:30.
I can say that night made me LOVE the new YouTube Kids app. Seriously if you have a child that plays on your iPad and likes to watch videos this is the app. It has preset playlists from disney, pbs kids, storybotz, the learning station, just dance kids, ect. It has many of the videos that I use in my classroom. But most importantly they are appropriate videos (although I find it hightly strange that my child likes to watch videos of people opening a toy or playing with a toy...).  When on the YouTube site my child likes to click on the vidoes on the side that supposedly related to the video she was watching however sometimes she ends up on some weird things, however in this new app there are not those buttons on the side. While I don't let me child live on YouTube, during times where we are in medical situations it is a good distraction for her (ps, thank you to our friend in collage who gave me this iPad to use with kids while doing autism therapy... several years later there is a little girl who still gets a lot of use out of it and it makes things easier for all of us!)
 We will not have the results from the sleep study until at least late next week. Sometimes I think the theme song to this portion of my life is the Jeopardy do...do...do...do...do...do...do...do! I try my best to put most of the tests out of my mind after they are finished and am just happy when someone calls me with results, and I am getting better at that then I use to be, but sometimes you just want to know!
We then met Brent for breakfast in Elkhorn before I went to work and he went to his ENT for his post op appointment. Brent then flew out later that day (on a flight that got changed no less then 6 times in 24 hours) for work. As I type he is in the air coming back home :)
Wednesday afternoon my goal was for a nap for Jillian and myself. I was exhausted, but she hit that overtired I'm not going to sleep point so it was a long afternoon. At one point I sat down on one of our couches (we have two Ikea small couches side by side in our livingroom.. they kinda seat two people and are lower to the ground) to fix something on the iPad. Jillian was sitting on the other couch. She stood up to see what I was doing and lost her balance as she stood up and fell on the floor (trust me, I have told her over and over and over to not stand on that couch!) She fell onto a blanket on the floor. She cried but it was a really short drop onto something soft so I figured she had to be fine... she then fell asleep. I woke her up around 6pm to get her a bath to get all of the glue like stuff out of her hair. After washing it twice I got about 90% of it out. She did not want to stand up when I put her pajamas on but she was still acting tired. She then went to bed.
Thursday morning we got to school and Jillian was limping really badly. She would not really put weight on her leg. It continued that way all morning and it was hard to get her to stand at all. I called the nurse practitioner's office and they got her an appointment in the late afternoon because we were waiting for an oxygen delivery. Thankfully her oxygen came right at 1pm (the first time her oxygen delivery has gone on without a problem) Oh that reminds me, Monday VNA had to come out because we got home from therapy and her oxygen concentrator would not stop erroring. It would turn on for 30sec-2min and then the error light would come on and the alarm would go off. After 20min of troubleshooting I called VNA and amazingly they had someone to my house very quickly to replace it.
So after VNA delivered oxygen Thursday I called the nurse practitioner's office back and they were able to get Jillian in sooner. We got there and waited in the waiting room for a little bit. The nurse called us back and as I stood up I could feel my skirt was wet. While sitting on my lap Jillian peed through her diaper and clothes and onto my blue jean skirt and leggings. We are not talking a little wet spot here... we are talking the size of a paper plate wet spot in the middle of the front of my skirt. Sometimes you just have to laugh! There was nothing else I could do at that point.
The nurse practitioner looked at her tail bone, hips, knees and legs to try to figure out why she was still not putting weight on it 24hrs later. She is too young to know to be careful with it after falling and has never not put weight on her leg before. The nurse practitioner said she thinks it is muscle not a bone problem and to give her Tylonal and bring her back Monday if she still is not walking on it.
While we were in with the nurse practitioner the GI office called and left me a voice mail. I called back once we left and they were calling to schedule a EDG with biopsies, and full motility testing to be done again. So July 30th we head into Children's for the tests. The first part is done in the OR and then the rest will be done in a room. We also got a call this week that it will no longer work to have Jillian's CT scans and pulmonology appointment done in the same day because the pulmonologist will be gone... We will be spending a lot of time at Children's in July between different doctor appointments and tests.
She is still limping today. She is mainly walking when she has to and holding onto furniture to walk. She is walking like a baby who just learned how cruse along furniture. She is crawling some, and when you ask her where her boo boo is she shows you her shin so I am guessing that is where the injury is however there is not a bruise and you can touch it without a problem, but when she tries to walk she says "ow." I am kinda at a loss for why she can not walk on it correctly. It was a short fall onto something soft and she landed on her back. Hopefully she starts walking on it normally soon.I fell bad for her that it seams to hurt her to walk on it, although she is handling this like a champ!
This is her first real ouch. In fact I dont think Jillian has ever had a band-aid that was not given to her by a medical professional. She falls over all of the time while walking however this is the first time that she has an injury that she gave herself that lasted longer then a few seconds of crying.  
Today we also had our home visit for Jillian's state insurance. For the first two years of having state insurance for a child who is disabled you have to have a home visit each year and then it goes to every other year. Since this is her second year, we have to have a home visit to do her renewal paperwork. Each year you have to submit current information to the state about how your child is then to determine if they still qualify for this type of insurance. Jillian is needing more this year then last year so I am not concerned about them renewing it for another year, infact her caseworker gave us paperwork for additional programs Jillian qualifies for. We try to use state programs as little as possible because there are so many families that need them, so we try hard to only use what we have to, not based on what Jillian qualifies for but what we actually need. Without state insurance as a secondary Jillian's medical bills after our primary insurance would be 10s of thousands of dollars each year. Brent's work has a good insurance plan and that is still the case. We are very grateful for the state insurance.

My goal for this long weekend... rest! Hoping for some sleep, looking at grilling out and hey... the main level of our house is pretty clean for our home visit today so  I don't have to worry about cleaning this level! Its all about finding things to be happy about!

She is too cute!

All hooked up :)

Her hair the next morning

After her bath... clean hair

Resting :)

Was not expecting that

Ever have a day where you feel like a curve ball came out of left field and you squarely caught the ball... with your stomach? Well thats today...

Let me give you a little back story first...

Jillian's first hospitalization was when she was 2 months old. She was hospitalized for vomiting. During that hospitalization the GI doctor on for the week made a visit to the room. Everyone was thinking she had a virus or something along those lines so GI said they could not do much to help us then but that she wanted to see Jillian in clinic a couple weeks later because of Jillian's weight gain issues.

A few weeks later a worried mom brought her tiny baby to their first doctor appointment ever at Children's (I had been seen at Children's for about 4mo when I was 16yr old but otherwise it was just the place you watched commercials about... ps did you see the cute kid with the NJ tube on the latest Children's commercial, that would be a video of Jillian when she was 4mo old)
I was nervous. By this point we knew something did not seam quite right with our kid we just had no idea what was going on though. That first doctors appointment set our tone for Children's. They were helpful and explained things and listened. I left that appointment with a plan (this was when we started fortifying Jillian's milk... I thought the price then was crazy... if I only knew!)
We went on to see this GI doctor about every month of Jillian's first year. She attempted Jillian's first GJ tube surgery (which did not work, but that was not her fault) and celebrated with us for each tiny weight gain, and listened to me as I voiced my concerns. After the first year we have spaced out her visits a little bit more, but they are still very regular.
The office staff has become family. The ladies at the front desk fight over who gets to weight Jillian. Our old dietitian comes back to visit us even though she is now assigned to a different doctor. Our current dietitian plays silly games with Jillian and helps fight along side us to get Jillian the formula she needs. We painstakingly calculate each drop of fluid that goes into Jillian and try to work plans for the best ways to help Jillian grow.
The nurse is AMAZING and has helped in so many ways. She has gone above and beyond what she has had to do and made Children's a welcoming place for us. I can not say enough good things about the nurse and everything she has done for Jilli. From taking my calls when something is not right to celebrating victories with us to checking on us when we are in the hospital, the nurse rocks.
Obviously you can tell I feel very passionately about this team. Not to say we have always had the same ideas or have not had to work things out a few times, but they are like family. They truly care about my child and that shows with every choice they make in regards to her care. Want to know why we feel so passionately about giving back to Childrens and why we do the walk... this team is a large reason why.  

So we went to Jillian appointment today in GI. The nurse was in a meeting so she was not there. A different nurse was filling in, who was really nice, just not our nurse. The dietitian came in, Jillian gained a little in height but lost weight... we decided though that we are messing around a lot with her respiratory system right now and that it is not a good time to mess with her feedings. Thankfully we have worked together long enough that she understands how we have to look at these choices for Jillian and that we can only mess with so much at a time or her body just shuts down. We agreed that we would look at it again in a few months and see how it has leveled out after being on oxygen for a little while and then if we needed to we would make adjustments. I am grateful that we are able to work together to make those choices.
Then the doctor came in. We talked for a little bit and she told me that Jillian has moved past her level of care and needs to be transferred fully to the motility clinic for her GI problems. This is a smart doctor, who I respect a lot, and she just told me Jillian's health needs are now past her level of care. As a mom that hit my heart. She said that she and the GI motility dr talked (the dr we visited with last month) and they are both concerned about Jillian and that her case has become more complex. It is one thing to know your kids medical stuff has not been looking great lately... it is another thing for a doctor who has seen your child from the start to say it.
She told me that it is not that they want to get rid of us and talked about how much they love Jillian and how much we have all been though together, but that this was the best choice for Jillian because this is the level of care she needs. I think this was hard for her too. She has been there from the start. She talked about how as Jillian gets older more things are coming to light and things are not resolving like everyone hoped and now the fact that oxygen is in the mix changes things.
This is our little family there...
Jillian's GI care will now be transferred over to the GI motility specialist we had a consult with last month. I really like her and I know she cares a lot about Jillian too. We met her over a year ago and she has been in and out of Jillian case, up until this point just as a consult on tricky things or for tests that a motility doctor had to run. I do like this new doctor... she is great, it is just the admitting that she needs the next level.
The dr today mentioned maybe running all the the motility testing again to see what has changed over the last year we can compare because obviously she has a GI motility disorder. She also asked about genetics and what is going on there. I think her doctors are getting frustrated that we dont have more answers there yet.
It is also leaving our little GI family. The nurse in charge of Jillian's case will change. It will most likely be a different dietitian as well.
Change is hard.

I know to some this probably sounds like I am being really dramatic, and yes, we are still getting our little girl amazing care at an amazing hospital with a great doctor, but when you rely on doctors as much as we do, it is hard to change from someone who loves your child the way this team love our little girl. It is also hard to admit that her level of care needed has changed.
When you are a parent to a child with special needs with an unknown diagnosis with and unknown prognosis, you don't have things like a big appointment where they tell you what is wrong and what the plan is, you have these little, yet big in their own right, appointments that show the layers to whatever this unknown thing is. It hits you. This is one odd messed up way to raise a child. Honestly today after that appointment I would have probably bought Jillian whatever she wanted, however I knew that would not help any of these feelings, but I just wanted to do something.

We are blessed though. We are blessed with an amazing hospital. We are blessed with so many people that love and care about our child.We are blessed with one AMAZING little girl who lights up the word with her smile, gives the best hugs and the silliest kisses. Despite all... we are blessed.

This choice was not made lightly though... it was made out of love for our little girl, and we will see what is in store next in her little adventure... this afternoon it was the ZOO!

The first ride on the zoo train of the season. She loved it and smiled like this the whole way

The floor in our train car. The stroller clip made it easier to carry the oxygen and feeding pump at the same time. She also popped her medport while she was waiting for the train to start... pour train car got a little Elecare bath

Surgery, family and life

We are laying low here today. Brent had surgery yesterday to fix his deviated septum that was really messed up. It was a long day yesterday We got to the hospital in Janesville (about an hr from our house) around 11. Brent checked in and people came in and out and he was taken back into surgery around 1:30. Surgery lasted around 2 and a half hours. Then he was in recovery for an hour and then resting in a room for an hour and a half before he was discharged. His surgery went well and without a hitch. Jillian did AMAZING during this time. She sat in her stroller and played with toys, watched TV and played on the iPad. I was so proud of her. Brent is healing well. He is still sleepy and has yucky stuff coming out of his nose but he is curled up on the couch hanging out.

I just want to shout out to a couple of amazing people! Big thank you to Dan who is outside mowing out lawn as I write this. He also picked up dinner on his way here. Thank you Dan!
Brent's grandparents are in town right now and we are enjoying getting to spend time with them. They came this morning and hung out with Brent while I was at work. I am very grateful for them coming to make sure he was good while I was gone this morning. I really appreciate it.

We had a good mother's day here. It was busy but it was good. 

She stole my phone and got caught!

She is LOVING her oxygen hair bows

Those $1 easter bunny ears where a good use of our money. She still plays with them all of the time.

Her cart full of babies!

My cute girl with her oxygen. She is getting use to it and so are we.

Building with her duplos

Singing to the Mickey Mouse Club theme song

She was literally on the edge of her seat watching the old black and white episode of the Mickey Mouse club

Cuddling with daddy

Playing with Great Grandma Jill

She was figuring out how to ride her bike with oxygen

My gift for mother's day from jillian from school

Jillian gave great grandma a check up

Jillian and uncle dan played duplos together

cuddling with uncle dan

doing a puzzle with her great grandparents

playing guitar

Jilli playing with daddy. Brent looks kinda funny with his bandaging

Thank you for all of the suggestions for how to have Jillian's oxygen while she is outside at school. We got this Little Tikes wagon which fits it perfectly. She really loves it and thought it was great at school today.