Summer Fun Pictures

Here are some pictures of some of our fun the first month of summer! Enjoy!

Jillian helping to mail things out...

She LOVES her little trike!

She liked to put leaves on the wheel

she was studying the leaf

Lots of playing with toys

Splashing in her pool. We put less then a half inch of water covering the bottom 

She loves her pool!

Silly Jilli!

Riding the Bees at the carnival at Jelly Belly 

Swallow Studdy

This post has been sitting open in Firefox for a week with just a title and a blank body. I have stared at the big blank white box multiple times however unable to write a word. It is not that I did not have something to say, it is that emotionally I could not do it. So here I sit, a week later, making this big box a little less white.

Last Thursday Jillian had her second swallow study done up at Children's. We had not ask for a swallow study, the head of GI decided she needed one because he wants to move forward with feeding clinic. A swallow study looks to see if a person can safely swallow when given food. It is done with X-ray and watches to see if food goes down the esophagus or the trachea. Jillian has never had a problem with swallowing the first time something goes down. Her problem comes in when she refluxes her food back up; then she aspirates on it while food is trying to go up and down at the same time.
I am pretty positive with this study the head of GI's goal was to prove that she is safe to eat. Despite what multiple other professionals at Children's and Aurora has told him, I think he still does not get what is going on with Jillian. This study for Jillian proves nothing. It is is only a couple of minutes long and only looks at the initial swallow.
Last Wednesday night I was filled with anxiety about the swallow study because:
1. I was afraid (and still am) that despite that her issues are with refluxing foods, that from a clean swallow study he would say she is safe to eat and try to push us to feed her orally even though that is not what is best for her and will lead to pneumonia. Multiple other professionals agree that she is not safe to eat.
2. For a swallow study Jillian has to drink barium. While she is fine with drinking it, I was afraid of what it would do later. Her getting sick from aspiration is hard on everyone, especially her. We try our hardest to avoid her getting things in her mouth and to think about giving her something on purpose is hard to wrap my head around.

My mom went with me up to Children's for the test. We got in the room and started talking about the test with the speech path. I liked her a lot. She agreed with us that Jillian's medical history proves that there is some underlying medical issue going on and that it would be super helpful if we could figure out what that was. We talked about the aspiration and how it happens and she gave us the option to opt out of the swallow study. After some discussion we decided to do that study but to only do a very small amount (the same amount we give her orally each day for her medications). We decided to give it to her in a syringe so we knew exactly how much we were giving her. Currently the only way she is getting anything orally (her meds) is through a syringe. We decided that since all this test would look at was the first swallow, that is did not make sense to give her a lot to just make her aspirate when the camera was not on.
We got the barium in the syringe and started the test. The test last just over a minute. Jillian did not aspirate during the test but we did not figure she would.
The speech path said after the test that she has an immature sucking pattern but with her history she would be surprised if she did not. She agreed though that we should not be giving her anything but her medication by mouth. She said that with Jilli it is not safe. The speech path understood Jilli and her feeding concerns.
As much as I had a lot of anxiety going into this test, it did bring a little bit of peace about the upcoming feeding team evaluation. The speech path that did her swallow study is the same speech path that is on that team. Hopefully since she has already met with us and knows us and Jillian's story, I am hopeful that she will be an advocate with us for what is safest for Jillian. I know that everyone that works with Jilli wants to do the best thing, I just feel like some people define what is best for Jillian differently then others.

Since the test... Saturday morning Jillian woke up coughing and needing a neb. Saturday afternoon she was doing better. Sunday morning she woke up with a temp of 99.4 and needing a neb. We did nebs every 4 hours Sunday. By Monday her temp was down and we did a neb in the morning and then she was good. Tuesday morning she started off ok and then part was into the morning her teacher came to me and said that she was really rattly and asked if she could do a neb with her. We then did nebs every 4 hours the rest of the day. Yesterday she was rattly too and did nebs all day. You can feel one spot in her lungs that has a definite rattle to it. She has had a green runny nose off and on too, but honestly this is not too bad for her having taken something by mouth. We did not have to put her on antibiotics or admit her to the hospital. We did only give her a little over 2ml though and she let a good amount of that roll back out of her mouth. I know it is crazy that such a little amount could do so much but for Jilli that is just how it is. Could you imagine what this week would have been like if she had more?

Monday Jillian had her 18 month check up. Her check ups mainly consist of me filling her dr in on everything going on and what is happening with each of the specialist. She goes over the basic things too. She looked at Jillian's bottom and where her pee comes out is fusing again. We are going to put the cream on it again. We talked about Jillian's speech and gross motor delays. She has referred us to an independent therapy place in Elkhorn. We have her speech eval set up for Monday and are working on a PT eval. Her doctor did not like the amount that speech and PT are coming from birth to 3. Now we are trying to figure out all of the insurance stuff for having her in b to 3 and a private company. I feel like a total jerk if I were to pull her from b to 3 after just having them come out and re-eval her.

Things for Team Jilli are in full swing. This week at work we started a penny drive for Team Jilli. It is so cool to see the kids get so excited about helping other kids! Our Team Jilli goal this year is $1,500. 

This Monday night our friends Brain and Lauren from collage joined our dinner with Jaime and Jason and Dan. It was a really good night catching up with old friends. We were able to meet Brian and Lauren's little boy Joshua. Joshua and  Jillian just kept staring at each other. Jilli did a good job sharing her toys with him. It was such an encouraging night for us and we were so blessed to spend time with friends.

Through this long week I have been so grateful for some amazing people in our lives. For Jaime, my Aunt Sandi and my mom for talking to me and helping to ease some of my nerves before Jillian's test. I am so grateful for these three amazing women in my life. They are such a blessing to us. I am thankful for all the people who have prayed for us. As my Aunt Sandi put it "you are the people who go to your knees for us while we fight the battles and when we feel to weak to keep going." Your prayers have really been felt this week.

Seth and MiKaley came over for dinner. Jillian liked playing with them

Grandpa reading Jilli a book

She is wearing the same clothes she did last summer. She is between 9mo and 12mo in clothes

Playing with Potato Heads. We have some of the coolest Potato Head parts from Disney World

She LOVE Gears

Working on walking

Curled up with a blanket

The post op shoe is off my foot! My toe is still sore but doing much better!

Jillian's Breakfast... acid reflux meds!

Helping daddy fix a problem at work

My rock star tubie girl!

I love those sun glasses! They only stay on for a minute or two at a time but they are so cute!

Reading Doc Mcstuffins with Uncle Dan

Getting comfy while taking a neb!

PT and the toe

Jillian had pt today. It was going to be next week but because of scheduling we moved it to this week; plus we are not going anywhere today (I'll write about that in a minute).

Pt was surprised that Jillian is not walking like crazy yet. At first she watched Jillian walk in straight lines and was surprised even more that she was not an independent walker. 

Then we pin pointed some of the problems are: 

1. She struggles with turns. She is great walking in a straight line for 7-12 steps at time. However as soon as she starts to turn she falls 

2. She has trouble standing without pulling up on something. By this point she should be better at standing without holding onto something and should not need to pull herself on furniture to get up. 

We talked about a few different things to try to help her with these skills

So since our life on a normal day is not our own level of crazy... My clumsiness decided to add to the crazy. 

Tuesday night I got home from work and went to cook dinner. On the stove was a dirty fry pan and lid from the night before. I picked it up to set it on the counter and in that process the lid slid off and landed on my foot... Mainly the base of my big toe. 

After I rolled around on the floor crying for a minute Brent helped me to the couch and I put my foot up and iced it. I did not want to run to the dr right away because I was hoping it would just sting for a minute. Well an hour later my big toe would not bend. I am a person who bruises easily but I don't really swell. 

Brent took me to the walk-in clinic in lake Geneva. Luckily there was no other patients there. They took me back and did my blood pressure and then took me right to X-ray. Then the dr came in. She said that there was no large break but she was unsure why it would not bend. She said it could be a small hairline fracture that they could not see since it is a toe. They wrapped it and then put me in a post op shoe and told me to keep it elevated and weight off of it. I kinda laughed since I have a jilli.  

My Grammy has come over the past two days to help me out. I hate this helpless feeling. I can't go to work... I can't do much with jilli... I can't do most things I want to get done. I'm trying to just relax and not get frustrated too much and take this as God saying I needed to sit on my butt for a little bit. I am so grateful for the people who have helped out. Dan for watching jilli and putting her to bed by himself so Brent could take me to the walk in. For Jaime and Jason for bring dinner over last night so I did not have to worry about that. For my grandmother for coming over and doing our dishes and vacuuming the floor. For Brent doing the jilli things that I normally do. I'm really grateful. I'm going back to the dr tomorrow so they can look at it since the toe is still not bending. Hopefully it will heal quickly and I can get back to doing all the things I need to do and love. 

I dented the lid... With my toe

Wow, its June already

It is crazy to me that it is already the last week of school in Elkhorn. Teaching 4 year olds means that most of my kiddos go on to big kid school next year. Its a bitter sweet time of year as I look back on how much they have grown and see all of the exciting things that next year has in store for them.
Working at a daycare also means that we are in the swing of getting summer stuff ready. During the summer I switch classrooms and get to spend my day with school age children. I have a torn heart as a teacher between loving the fours and missing working with second graders. This kinda provides me with my mix :)
This summer also marks a switch for me professionally. I am going from working 4, 10 hour days down to part time. While I love my kiddos at work, my home kiddo needs me too and her level of needs has not been slowing down. I am excited for this change because it means more time with my girl and maybe being able to catch up on a few things that have not gotten done because my day off during the week is always revolving around Jillian appointments.

Right now I think part of my exhaustion has been the mounds of medical paperwork I have needed to fill out. Resigned some things for birth to 3, a tun of stuff for genetics and the biggest packet of all for feeding clinic. The hardest of all was the feeding clinic stuff. A 300 question development assessment, 3 day food log (easy to fill out when your kid eats nothing), physiological questionnaire for Jilli and myself and then a LLLOOOOOONNGGG packet asking every medical question you could think of. They wanted dates and doctors names for everything so I spent 4 hours digging through her medical records. I have to say I LOVE the Children's Mychart! It was so helpful in filling all of that paperwork out. Sadly the Aurora Mychart only has records available for a year so a lot of what I needed I could not see :( I was really dragging my feet filling it all out because:
1. I spent a ton of time filling it out and I don't think she will even qualify for feeding clinic. She is not safe to eat food and I have heard that they want kids off J feeds before they do much in feeding clinic. I feel like this is one of their hoops I have to jump through for them to see once again that she can not eat orally safely. I kinda feel like I am running into a wall. I know they want her to eat orally, we do to, but it needs to be safely. They don't have to do nebs around the clock for days, sometimes weeks after she gets something in her mouth. They don't see how it effects every area of her life when she gets sick from it. I know we have smart doctors who are trying their best for her, just some things seam crazy. So I filled out all of the paperwork and in the section at the end I included a nice little paragraph diplomatically explaining how I feel about the thought of her eating orally while she still aspirates on water, makes me feel.
2. In order to fill out the LONG packet I had to dig through all of Jillian's records. I could see some ways that she has grown so much! She is cruising along furniture and taking a few steps here and there. That is a long way from a year ago when she was not rolling over yet (she did not learn how to roll until 7mo old). I see how smart she is and how amazing her fine motor skills are. But at the same time the health stuff hits you in the face when you dig through it all. I see how her lungs and stomach are no better then the were a year ago, and honestly they are worse. She is using her nebulizer consistently for at least a week out of every month. She aspirated on pool water just being a normal kid. She tires so easily. I should be say "where do you get all of this energy... mommy cant keep up" but instead she plays in really short bursts and then we find her curled up looking at a book for 30 minutes with a blanket. While it is great that she loves to read, and her fine motor skills are amazing since she spends so much time sitting, it is hard to see her get so worn out from everyday kid things. She needs a lot of breaks in her day and lucky for us she is good enough about self regulating at this point that she takes breaks when she needs them. I don't think she honestly really has a choice, she just cant keep going at normal kid pace for very long. I look at other kiddos Jilli's age out in public and to me they act so old compared to her. This does come to our advantage at times because people think Jilli is younger then she is so they are not as surprised when she does not eat food or walk, they just marvel at how great she is coloring or at how many teeth she has.

I think for the first time since February we finally have a hold on her thrush and she currently does not have a yeast infection in her diaper area!!!! Maybe we are finally trumping the yeast. We put her on a different yeast med last Tuesday and it seams to be working. She could not be on Erytho and the thrush med because they make the Erytho side effects worse however we are seeing it make the Cypro side effects worse too. The poor girl goes to bed at 8pm but is tossing and turning until 11pm or later. You can tell she wants to sleep so bad but cant. She is not really napping well either. The thrush med is a 14 day run and we are now 1/2 way into it so hopefully there is an end in sight!

Jillian's walking has not really progressed. She will take a few steps if you get her in just to correct position. She kinda lunges at furniture. She will walk for short bursts of time however it wears her out.

She has moved sounds again. Jillian seams to only say one sound at a time and then seams to "loose" that sound before she gains another. She was using the "m" sound a lot a couple of weeks ago and it sounded like she was saying momma. Now the /m/ sound has mainly gone away and has been replaced with /i/. She had speech today and showed off some of her signs. She signs "more" "please" "hi/bye" "thank you" and "all done."

This weekend we put together her ride on toy that she got for Christmas. She is loving sitting on it, riding it a little and pushing it around. She has been "parking" it in her tent.

Jillian and I have been loving the nicer weather and getting out to run in the park. I want to get to the point where I can do one of the RunDisney races. I had thought about running in the Children's Hospital run/walk however I decided to walk it again this year because then I can talk with others while we go through. It is such a fun event!

Another thing we were busy with in the month of May was making Tubie Friends! I am loving being a Tubie Friend surgeon and being able to give back to the tube feeding community. This is such a great group of people who have such a genuine heart of making the lives of kiddos a little bit easier.

Last weekend we were able to celebrate my little brother graduate from collage. He worked so hard to get to this point. In the fall he is leaving for Kent State for his PhD program in Physics. Over the summer he will be living close to us at an observatory working on a project with NASA.

Jillian has popped 4 molars and is currently working on her fangs... lol! They are so close to coming threw. She is such a drool mess right now. A few times it has been hard to tell if she puked or drooled everywhere.

We are so grateful for our friends who have stuck by us through the last year and a half. I know this would be an easy time to walk away. We don't get out much, spend lots of time in the hospital, and honestly our life rather revolves around a 17 month old; making plans have to be flexible and hang out time is always tentative. I am so thankful for the people who have made it a point to be in our lives even when I feel like many days I am a crapy friend (I'm working on being a better friend to all of you, I really am!). We truly appreciate our friends who make it a point to call, text, facebook, or come over. It means a TON to us. It makes it feel like some of the craziness of all of this is a little less crazy! Thank you to the people who truly listen and hear not only our words but our hearts. To our friends who hold no judgement, but love us. It refreshes us and points us back to Him. I just don't know how to say thank you enough to some of the most amazing people that fill our lives. 

So thats kinda an overview of our lives right now. The day in and day out. We are blessed to get to be Jillian's parents and share her life with her. She is such an amazing little girl and her smile melts our hearts. Her hugs tell you it is all going to be alright. We are blessed that God chose us to be her parents!

GJ backpack... drainage bag with stomach bile... pushing a baby.... our normal :)

Cozy  with her baby doll

Reading a book.

When she wants to cuddle, this is how she comes to you :) How can you not just melt?

Putting money in her piggy bank... what she wants to do ALL the time

Playing in a box with Uncle Dan

WEEEE!

Baby needed the inhaler

Sitting with her great grandpa at uncle Seth's graduation

Signing "more"