What a week

Ever had one of those weeks that you are glad is almost over? That would be this week.

Last week we got to be a part of my cousin Jessica's beautiful wedding. Jilli loved seeing all of the people and it was nice to see family. Welcome to the family Ryan!

A weekish ago I had anaphylactic reaction to latex. It landed my butt in the ER for several hours. I have not been in the hospital for asthma since a couple of months before my wedding (5 years ago) so I am not use to is anymore (there was a 6 year time frame where I frequented the hospital for asthma issues). I had never had a full anaphylactic reaction before. I am allergic to apples and it cause my throat/lips to tingle however it has never sent me to the ER. It has been a while since I have seen an ER move that fast. My respiratory rate was so low it was making things flash and beep. Within 15min of entering the ER I had an IV started, shot of epi, muscle relaxer and predisone in the IV, start of an hour long run of a run bag of IV fluids, and a neb treatment. Before I went into the ER I did a neb treatment and took 2 Benadryl. Within an hour and a half time frame I had 3 nebs. The doctor said when I arrived I was not moving air however after all of those drugs within a couple of hours I was able to function. I would bet that it I was not a moderate asthmatic that knew what they were doing they would have admitted me however they let me go home. I have been on nebs all week and predisone. Today I am starting to really start to be me again. It has made the week long.

Jilli has been taking nebs this week too. She had a broch on the 23rd. They say that recovery from those are quick however with Jillian it takes a long time to bounce back.

Tuesday I had a follow up with my doctor about my trip the the ER. We decided that it was a good idea that I now carry an epi pen and stay far away from latex (I really want fries and campfire sauce from Red Robbin right now but they have balloons there). After my appointment Jilli and I went and spent time with my grandparents. It was good to catch up with them. Tuesday night was spent trying to get my epi pen. Apparently our new insurance covers only a couple of dollars of the over $300 pen. I found a coupon online for $100 off however it was still a crazy price. I kind of needed to pick it up that night though because I was taking a bunch of 4K kids to an apple barn on Wednesday and wanted to be safe.

Wednesday we went to the apple barn. The parents of the kids in my class probably think I was crazy because I did not touch anything while I was there but the field trip went well. Before I left for the apple barn Jillian's pump decided that it did not want to work. It just kept erroring over and over. We had a problem with it last weekend with her pump turning off in the middle of the night for several hours so she missed several hours of feed. By mid day Wednesday I was ready for her pump to take a flight (this is the one that they switched out for a month ago and honestly I have disliked this new one for a while, it runs slow and the battery sucks and it does weird things) I called med supply as I left work and they said they could switch out the pump. I was on my way to Milwaukee to get one of Jillian's meds anyhow so we went to their main office. We were there for a while. Jilli and I then stopped at the zoo for about an hour to see the elephants, giraffes and to ride the train. We LOVE to go to the zoo and I love that we have a zoo pass and are able to just stop by for an hour and see a couple of things, ride the train and not feel bad about only being there for a short time. We then ran over to Children's and picked up her med. Then we went to the Mayfair Collection. They have a Carter's store. I was looking for a jean jacket for Jillian. We bought her a peach jean jacket on clearance a few weekends ago and she is in love with it. She LOVES jackets right now (almost as much as shoes) Carters had the same jacket in blue on clearance and the kenosha store was out of it. The one there had it in an 18mo so I picked it up however it is still way too big for her right now. Then we went to Mayfair and met Dan and Brent to make Build-a-Bears for Tubie Friends. Then we went to dinner at PF Changs (my meal sucked... don't get their Pad Thai!) Then we went home :)

Thursday night we had dinner with Bren't parents in Lake Geneva and then came home and watched the Packers kick butt!

We also got a call back from the nurse in charge of the aero digestive clinic on Wednesday. She gave us results back from her surgery:

ENT: There is no clef, just that weird thing where there does not look like there is muscle but there is. She said to follow up as needed.

Pulmonology: Her lungs have bacteria and such in her lungs that show that she is aspirating regularly on her own secretions (this is the same as her last bronch last Christmas) They said to stay on our normal follow-up schedule with them.

GI: THEY WANTED TO SEND US BACK TO FEEDING CLINIC. I will fully admit that there was NO nice word in my head when she said that. I then questioned this and kinda said no. Why would we go back to feeding clinic? She is not medically cleared to eat. You just told me that her lungs show chronic aspiration! The nurse said that she would talk to the speech path that works in feeding clinic and get back to me. She called back a little while later to say that the speech path said she does not belong in feeding clinic (THANK YOU!) She said the speech path said to send us back to Dr. Kahn (THANK YOU!) So the moral is, after me throwing a fit, we are going back to the GI dr that I like! Yeah! Sad news... we could not get back in until November.

Jillian's new pump is runs fast. She spent most of Thursday miserable. Her first pump ran fast and we could only get her as high as 58, her second pump ran slow and we got her up to 61. Her new pump is running about 7% faster then it should. We have bumped her back down to 58 and she is spending less time in pain. We are working with her dietitian to work on getting her to grow (her pants from last year are falling off of her)

So this is a catch up on this week :) the best part... Lots of cuddles from my little girl! I love jilli cuddles!!!!!!

Jilli and I at the reception

Jilli dancing with Jess

double nebs!

Jilli and daddy sitting at the top of the stairs

Jilli cuddles

Jilli taking her meds

On the train

She had such a big grin!

Waving with two hands

Jilli stuffing a bear at Build-A-Bear

Jilli took a picture of grandpa during dinner

I also have TONS of these photos on my phone

Jilli watching the Packers

This is a picture from her surgery. This is her throat. This picture is sideways. It shows the funny part if you know what you are looking at... if not... her is a picture of how just above the vocal box should not quite look

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! 

  

Feeding Team Eval

Friday was Jillian's eval with the feeding team. If you have not been following for a while here is the back story:
Head of GI decided that we needed to go to feeding team despite our thoughts on the situation. Our other appointments with GI were all cancelled (NOT by us) and we were told we had to see Feeding Team before we did anything else. To say I was annoyed was an understatement. Feeding Team's goal is to get kids that are SAFE to eat off of their feeding tube and eating normal food. They do this with a multidisciplinary approach and it is a great tool for kids that are at that point. We are no were near ready for feeding team with Jilli. She is still not safe to eat. For the past few months I have been stressed about this appointment.

My mom came with Jilli and I to the appointment. We got up there and I have to fill out more paperwork. They brought us back and measured Jillian. We we visited with GI back in May Jillian was
21 lb 1.7 oz and 75.4 cm. Friday she was 21 lb 1.6oz and 76.6 cm. (ie, no real growth in 3 months...) Jilli is looking more mature in the face so people keep telling us she looks like she is growing however she really has not.
We then went back to the feeding team room. It is a large room with a kid sized round table and an adult sized round table. It also has a lot of high chairs and cabinets. The first round of people came in. First we meet with a Speech and language path (same one who did Jillian's swallow study in June), an nutritionist, a psychologist, and a nurse.
Their first question was "What is the goal in bringing Jillian to feeding clinic?" My first response wanted to be "to jump through this stupid hoop that your boss is making us jump through so I can get the best care for my child because she really does not belong in this clinic..." but I took a deep breath, looked at my mom and said "Our goal is always that someday Jillian will be able to eat by mouth but what is most important to us is that she is SAFE to eat by mouth before we push it." They found that an acceptable goal...
We then discussed Jillian's case in detail. At the end of our discussion everyone made their recommendations.
SLP: You can try to do tastes (ie, dip a spoon in baby food and shake all of the food off so only the taste is left on but she can't get any volume) but only when it is safe and at our speed. She said Jilli is not safe to eat volume orally.
Dietician: Jillian has not been handling the goal of bumping her up to 61ml/hr. Since that is not working we are going to try mixing her formula to 22cal per oz instead of 20cal. We are hoping that she tolerates this change. Other then cal changes being hard on her pooping, she normally reacts to them well.
Psychologist: We are doing exactly what we should be. We are making the experiences with Jillian's oral med possessive and we have worked hard to keep her from developing an oral aversion. She said we are right that keeping her airway protected is most important right now. She said that she is there if we need her someday but right now is not the time for this.

Then everyone left to go meet with the Dr. (head of GI guy). Once they were done meeting they brought us to an exam room across the hall and we meet just with the dr. He shook my hand and said that he did not think we have ever met before. (insert a ton of emotions here that I kept inside my head). I reminded him that Jilli is the reason he had to listen to the theme song of Daniel Tiger's Neighborhood for over 30min one day. Then he remembered us.
He said with the conversation about muscle disorders and that she is not safe to eat that this was not the clinic for her (insert a momma who had to just smile or the sarcastic comments about this situation were about to go flying out of her mouth). He also said that some kids with muscle stuff only get worse with their GI stuff and that this clinic is here if we need it someday but that we might not. As hard as that is to hear it is a realization that we have already come to, it is just nice to see that he has finally gotten there too. We want our kid to eat but we have seen what has happened to her body since she has been born so we need to be realistic in order to give her what she needs.
He said they are transferring us to different clinic. The airodigestive clinic. It is a multidisciplinary clinic were an ENT, pulomonologist, GI and SLP work TOGETHER for kids with GI and lung problems! This sounds like where we should have been for months. In the end jumping through this hoop is going to get us better care for Jillian and in the end that was my goal.
They decided that we would be seen in the airodigestive clinic once every 6months (starting in September) and then see our NORMAL GI dr each month in-between! To me this sounds like the best of both worlds! We get to go back to the dr we like and get to work with a team that specializes in kids like Jilli. The only snag in this plan was that a dietician does not work in the airo clinic and a dietician needs to see Jilli next month because we are making the changes to her cal count.
The nurse came into the room and said that mom and Jilli should stay in the room and wait for all of the paperwork that they needed to give us and that I should go up front to make a separate appointment. As I was walking up front our favorite nurse was about to enter someone else's room. She and I stood and talked for a minute and then she wanted to see Jilli. We then went and found Jilli. She talked to her for a little bit and then decided that we needed to go see everyone else. See Jilli is well known in the GI department. A lot of different people have worked with us and she steals their hearts. Our nurse took off with Jillian in her stroller down the hall. We left my poor mom sitting in a room alone waiting for paperwork. Jilli and I got to go in the offices to see different people that we knew. Then someone found us with the paperwork. We talked for a minute and they said we could go make the appointment. My mom found us and we headed to the front desk. There was a new receptionist and she was having a hard time making the appointment with the dietician so our dietician ended up coming up to help.
We left there and headed down the elevator. As we got out of the elevator on the second floor there stood our old dietician who we have a great relationship with. We stood at the elevator and talked for a while and then a different GI nurse came by and we all stood there and talked. It was just one of those days were we ran into all of our favorite (except our normal dr and favorite receptionist) around GI. The GI department LOVES our little girl. Many of them would bend over backwards for her and many have. From personally carrying Jillian into the OR so she is not scared to taking time to really listen to what we are saying, the support staff in GI is amazing. They are the ones that have made Children's feel more like home to us and they truly care (to the point where I wrote many of them thank you cards and Jilli is known as the little girl's picture who sits on desks all over GI).

We then headed to see my cousin Luke. We ran into them on Monday when we were up at Children's and he was still stuck there. We visited with him and his mom for a while.

We then went to Cheesecake Factory for lunch and then stopped at the zoo to ride on the train (we promised Jilli we would take her on the train for how good she had been) We stayed at the zoo for a couple of hours and then headed to Target to pick a few things up. We then headed back to my parents.

Jilli and I have been staying at my parent's for a few days. Dan has C. Dif. It can be very contagious and  deadly for kids like Jilli. I have had C Dif in the past making me more likely to get it again (I got it from contact with someone who had C. Dif, I had not been on antibiotics or in a hospital in over a year when I got it.) I contacted my doctor and he said that once the house was scrubbed top to bottom with bleach that Jilli and I could go back home. Brent has been working since Thursday to get the house clean enough for us to go home. I am really hopeful to go home soon. Please pray that none of the rest of us get it and that Dan starts to feel better quickly.

I want to thank all of the people who were praying. I sent out a couple of texts Thursday night asking for prayers about the appointment and for the C. Dif situation and we were covered in prayers. I am so grateful for the people in our lives so stand by us and pray for us, offer encouraging words, or let us crash at their house randomly because we can't go home. I am so grateful and we are so fortunate that God has provided some amazing people in our lives! This is not an easy road but God is good and He provides what we need.

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!

On a cold cold day in January

Sunday night Jillian and I spent at my parent's house since my mom was coming with us to Children's on Monday it was just easier to be there. Monday morning we got up and packed up all of our things and took for for Children's around 10am. The lovely billboard on the side of the road read -10. BRRRRR! We packed the car with blankets and emergency things in case anything happened to the car. The drive up was smooth. The only car we did see in a ditch was a police van. We made it up to Children's around 11 and mom pulled up to the skywalk entrance and let Jillian and I out so we only had about 10ft to walk outside.

GI: First we went into the vitals room. They could not get a blood pressure but that is not uncommon for her. They did her weight. She lost more since her procedure on the 23rd. She is down to 9.76kg. Her length is 28.3in. Last month she gained more then wanted and this month she is loosing weight and she is on the EXACT same feeding schedule. Oh Jillian!
We then went into the room. The nurse came in and looked at her tube site.
The a fellow came in. She wanted Jillian's health history. I think we exhausted her! After we gave her the big stuff she left and talked to the doctor.
The doctor came in. I like/was frustrated by him. A few of his comments irritated me. He said that babies Jillian's age spend 2 hours a day refluxing. I know a lot of one year olds and I don't know any of them that spend 2 hours of their day refluxing like Jillian does. He also said that some kids reflux because they are board. He said that he doubts that is Jillian's issue. Yea.... I don't think she was born board, and if you ask me she does not spend much time board.
He did agree with me that if she has delayed gastric emptying that we do not want her to have a fundo because that could make her tube dependent for the rest of her life. It was a big relief for me to hear his view on this.
We decided that we need to figure out more with how her stomach is working. To do this we are going to do a PH probe study and gastric motility testing. There is about a two month wait to get on the schedule for the tests so it will probably be at least March before she get in. For the tests we will be spending at least a night up at Children's. They are suppose to call us when they get insurance approval for the test and are able to get her in the schedule. My biggest fear is that this test will come back normal so they will say her stomach works fine. I can tell you now it does not work fine. That scares me a lot right now. I know of multiple children who have had this test come back within normal limits but like Jillian their food sits in their stomach forever. As strange as this sounds I am praying that the test picks up the abnormalities of her stomach.
He and I disagreed about her lung issues. He said that it did not make sense to him that she is refluxing that is why she is getting pneumonia. You can hear that is what is going on. You can watch it too. He said that we would have to see what pulmonology had to say.
He said that he wanted her to see speech again because he did not want her loosing her skills. There was some confusion with who we had seen for speech before so I made a phone call today to figure out what we need to do. I do not regret our choice to take bottles away from her. I still fully believe that it was the best choice for her lungs at the time. We had multiple doctors and a speech pathologist from Children's that all stood behind us on it and it was the suggestion of many of them. I don't think this doctor agreed, but I don't really care. That was a choice we made looking out for her overall best at that time and I'm not sorry for it. I know it will take more work at some point if she is able to eat, but we knew that when we pulled the bottles away back in November. 
He was not positive that she has a motility disorder. He said that it still could just be reflux. As she gets older a part of me wants to still believe that this could all just be reflux but then a part of me needs to give that up. This is not typical reflux. Yes, many babies have reflux and spit up. I see kids that spit up. I work in a day care and have for almost 2 years. I have baby sat kids that have reflux. This is not typical reflux. I'm not sure why I get so defensive when people suggest that this might just be reflux. Maybe because they are not looking at the whole picture that I see. Maybe it is because when people say its just reflux I feel like they are invalidating everything we do. Kids with reflux don't puke hours later. They don't have food still sitting in the stomach from 12 hours before.  

In between the two visits of the day we hung out around the hospital. We went down the the cafeteria and had lunch. Jillian was not a big fan of it down there. She kept yelling. We went back to the first floor and hung out by the big fish tank for a while. She love that and she loved pointing at the fish when other people came up. Then we hung out in Cafe West for a while and she watched Mickey Mouse on my mom's phone.

Pulmonology: This is where the cold hit! It was so cold in there that they gave her a new quilt. It is beautiful and it kept her warm in that freezing room. They took her pulse ox and it was sitting between 97-98%. They left the probe on for during the appointment and she wanted to take it off so badly.
First we visited with the nurse. Then a really nice nurse practitioner came in.We chatted with her for a while and she listened to Jillian's lungs. She said they sounded really clear. She said that she had talked with the doctor and they wanted to put her on QVAR. It is an inhaler that Jillian will take twice a day with a chamber and a mask. It will hopefully help to keep the inflammation down in her lungs. The goal is to only have her on it for a few months but if she needs it longer so be it. She said it is hard to tell at this point if her lung involvement is all reflux induced, or more asthma induced or a mix of both. She said time would tell and treating it this way helps with both.
The doctor then came in. She said that there were a couple of cultures that did come back positive from her bronchoscopy. She said they were all viruses and things that hang out commonly in the mouth and nose and if she is aspirating reflux it would be common for them to then end up in the lungs. She said that there was also a protein in the cultures that is only made in the digestive track so the only way for it to be in the lungs was for it to be refluxed and then aspirated (this makes me want to go HA! to the doctor in the morning). There are a few cultures that can take up to 90 days and they will call us if anything comes back on those but it is very unlikely. 
They said that they did not need to see us until late April! Then the nurse came in and got us the air chamber and mask for her inhaler. In addition to the QVAR inhaler they also sent a script for an albuteral inhaler for us to carry with her in the diaper bag incase she needs it. They told us to keep doing what we are doing with giving her nebs when she needs them and to call them if anything big happens.

On our way out we stopped at the Skywalk pharmacy at Children's to pick up her Erythromicin. They are able to compound it differently then our local pharmacy so it last for 35 days instead of 10. They were also able to give me an empty vial with the label on it so I can fill that one for daycare and then I don't have to take it back and forth every day. It is so nice using a children's pharmacy because they understand requests like that.

On the way home I got a text that her inhalers were ready at Walmart so on the way we stopped there. My mom and Jillian stayed in the running car while I ran in fast.

Last night we had Jaime and Jason over for dinner. That was just what I needed after a long day. They lift my spirits so much. Jaime and I were talking about the doctors appointments and I was telling her about the motility specialist questioning if this is a motility disorder. She said that she had read the blog post before this one and read the article about the mom with two kids who explained the difference between reflux and a motility disorder. She said that as she read it she could tell that Jillian had all the symptoms of a motility disorder and that it was pretty obvious and that she was amazed that there was still question. That did my heart good to hear someone else say that because sometimes I question myself. I know what all of her symptoms are but I try to think of it all in the best light and convince myself that it is not that bad, when in reality Jillian can't eat. She can't sustain herself.

So now we wait for a phone call to see when the tests will be. We wait for a phone call from speech to find out what the plan is there. So far I am not too anxious about the wait because I am grateful that we currently have a plan... however it is only 24 hours out :)


Thank you to everyone who prayed for our safe travels yesterday in the cold. They meant a lot to us. Thank you for the prayers of peace yesterday. Days like that are long and draining. Thank you to my mom for going with and holding Jillian while I talked with doctors and jumped in when they did not hear what I was telling them. Thank you to everyone who had kind word for us or liked my pictures of us hang out on facebook. Just Thanks!

I like to chew on gears!

Pneumonia round....

So pneumonia keeps us hopping. Sorry for not posting an update for a few days... Here is a recap starting back at Thursday:

Thursday: Lazy day at home. Jillian and I hung out at home and she slept off and on and wanted to be held. I got some cleaning done around the house, in trying to get ready for her birthday party on the 14th. We did nebs every 4 hours.
In the morning I gave her the acid reflux meds. For one of the first times ever she did not want pink meds, which she normally loves. I ended up putting 1/2 of it in her g port because she did not want to finish it. Shortly after it was all in her body she started to reflux. It is normal for her to reflux her med. What is not normal was what happened for the next half hour. She coughed, choked and projectile vomited for over a half hour.  I have not been that scared in a long time. A little over 2 weeks ago she started vomiting stomach contents again. It has become more and more uncontrollable and in the past week she has not even been able to keep her acid reflux meds in her tummy. She has not had a bottle in over 2 weeks. She just cant handle it.

Sophia makes a good neb partner!

Friday: Doctor day! Brent and I gave her meds in the morning and 10min later she was puking all over our bed. I recorded it to show to the doctors. It is such a helpless feeling to watch her puke everywhere and there is nothing you can do.l It is even harder when you know that puking is causing pneumonia. We are not talking about a little spit up here. We are talking about ounces forcefully coming up. Her screaming in between puking and coughing. She looks scared and in pain. Once there is nothing left to come up she continues to cough and dry heave and gag. Once it starts there is not a great way to stop it.  
We started the day by seeing the nurse practitioner. My mom came and joined us. She listened to her lungs and said the one lung was sounding a little better then the ER report said (the ER dr had told Dan and I that they both sounded good....) and that the other lung did not sound any better then it had on Wednesday. She said we needed to go see Pulmonology at Children's and they wanted them to see her ASAP so they were going to see how fast they could get us in. We talked about getting more ned meds. Prescriptions can be such a pain sometimes. I then asked her about what the nurses were talking about in the Children's ER the previous Friday when they had a hard time cathing her. She took a look and said that yes the skin over her urethra was almost fused together. She sent in a script for some Estrogen cream. She also said that her yeast infection in her diaper area is back. We are just constantly fighting that. I think we are on our 2nd or 3rd tube of cream for that.
Then we had an appointment with GI at Children's. First one of Jillian's favorite people at Children's came in first,our awesome dietion! She said that Jillian gained more weight then wanted and she was not sure why. We can't have her on less formula a day then she is on now because then we run the risk of her being malnourished. She said she would go talk to the doctor and they would come up with a plan. The one of our other favorite people came in, the nurse. She asked us a few questions and then headed out. Next the doctor came in. She said that they had talked and they wanted to start her on something called Complete because her one test came back that she had dumping syndrome and  a recent paper was put out by the Children's hospital in Cincinnati saying that Complete is best for kids with dumping. Complete needs to go into the g port. At that point I stopped the doctor and told her g was not an option after how life has been at our house recently. I showed her the video and she got what I was saying. A child who has nothing go into their stomach each day other then acid reflux meds should not vomit, much less vomit for a 1/2 hour at a time. The vomiting should not cause pneumonia twice in 6 weeks. Once the doctor watched the video she got what I was saying and agreed that nothing could go into the g port other then meds that have to be digested in the stomach to work. She said that even though that one test came back showing dumping that she obviously has gastroperisis and we need to treat her for that. I agreed. She then did her exam and asked when the last time she had pneumonia was and I told her about Jillian turning blue on Wednesday. We then came up with a plan:
1. Each night Jillian's g port is now hooked up to drain all night. We are hooking a catheter bag up to her g port and everything that her body makes during the night drains into the bag. Jillian is on high doses of meds so that her tummy does not make a lot of acid however it will always make some acid and gastric juices and Jillian has progressed to the point that she can not handle her own gastric juices at night without choking on them refluxing. In the morning we disconnect the bag and measure everything that drains during the night. If it is more then 100ml (4 ounces) we have to call and they will tell us how much Pedialite to add to bag for the day to help make up for the lost fluid. So far is has been around 20ml of drainage, which is what we were expecting.
2. Jillian has been refereed to see a gastric motility specialist. We are very fortunate because there are not a lot of those and we are fortunate enough to have 5 gastric motility specialists in Milwaukee. Many families have to fly their children out of state to see a gastric motility specialist. We are being refereed to the head gastric motility specialist. I was able to get an appointment for January 6th.
3. They are talking about the possibility of gastric motlity testing. They did tell us however that because Children's is one of the few centers in the country that does gastric motility testing that there will be a several month wait. Once again we are very fortunate to have Children's so close because many families have to fly out of state to have this testing done.
4. We are going to keep her formula the same for now and see what her weight does. This is Jillian and her weight gain has always been unpredictable so we will see what the next month brings and then we will adjust from there. I have to bring her up the week of Christmas to get her weighted again. Some moths she gains too much for the amount of calories she takes in and other months she does not gain what she should with the amount of calories she takes it. She is very unpredictable with weight gain even though she gets an exact amount of food every day.
5. We are starting Jillian on Erythromycin continually. It is an antibiotic that is used for gastric motility patients for it's side effects. Most people get very bad diarrhea from it but in low doses for kiddos like Jillian it makes their system work more regularly. This is something we did not want to do, however she has gotten to the point where we have to do something. She is not pooping well except when she is on antibiotics. Her stomach does not seam to be moving much of anything and we are having a lot of vomiting. We have hit the point where we have to try it. We will see how it works. We dont take the choice to start this lightly, but having her on a continual low dose of antibiotics is better that her having large shots of antibiotics in her legs each time she get pneumonia. 
6. The nutritionist is going to talk to someone in the GI department that is in charge of helping with coverage of supplies. She is going to see if there is any program that would help with getting Jillian's formula covered. Our insurance has a small list of conditions that they will pay for medical formula for. Jillian does not have any of them, thankfully because most are fatal, however Jillian's food is around $15 a day at this point and the price will just continue to rise. Not super hopeful but we will see.

Overall GI went really well. We were there for around 2 hours. We are normally there around that amount of time. There are so many people in and out of the room doing things and talking to us that it does take a long time. Each of those people love Jillian so much that it is a comforting place to be most months.
We also got a call back from her pediatrician's office. They were able to land us an appointment on Monday at 2:30 with pulmonology! They wanted to make sure she gets listened to now. Especially since we have gone though almost 120 vile of neb meds since August and I just picked up the next box this week.
In the evening I went and picked up Jillian's meds. Her med to help the skin separate by the urethra was $60, I about had a cow until I found out that before insurance it is $200. She is one pricey little girl!

Uncle Dan's Christmas gift to Jillian. A shirt that says "Size Matters Not" with some of the coolest creatures from out of this world!

Saturday: She was super fussy! She did not really want anything or to do much of anything. When she got up she did not want her meds in her J port, she did not want to get undressed, she did not want to get dressed, she did not want her Farrell bag taken off of her g port, she just was not having all of the normal morning stuff. She cried for over 3 hours in the evening. It took her until after 11pm to fall asleep. She would just about be out and then there would be the slightest noise and she would wake up crying. The trick that finally got her to fall asleep... me laying down next to her bed and we watched the Cosby Show. The hard part for me was the episode was funny but if I laughed she would wake up.

Sunday: It was snowing hard in the morning on our way into Kenosha. We dropped Brent off at Church and Jillian and I headed to my parent's house. We did not want her exposed to extra germs. We are trying so hard to keep her healthy already and winter has not officially started yet. She hung out at their house most of the day. After Church Brent went to an Aurora Quick Care because he has not felt good for a week and his nose junk turned green over the weekend. He has a sinus infection and his ear drums are red. Mom and I went and picked up food for next weekend and got Brent's antibiotic. Then we made the drive home in the snow. Instead of 55 we went 35 all the way. The roads were kinda yucky but we made it home safe.

Early morning neb by the tree

This week has been a little emotionally exhausting for me. I guess I would not be human if it was not. I mean my kid turned blue twice, has pneumonia and her GI track is getting worse. Strangely the GI part is the hardest for me. Yes, her turning blue was scary,  but Dan and I were able to handle it. Yes that ER dr made me mad, but middle of no where hospitals are not known to be the best and I guess I can't expect Jillian's level of care there. Yes, it is frustrating that Jillian has pneumonia again but I said two weeks ago that it was coming. I knew when the vomiting started at that intensity again that we were headed down the same path. I called every doctor that I could on Jillian's case to try to stop it but no one could. But for me the fact that we are having to go the next level of care for Jillian's GI problems just makes it all real. I know I live this day in and day out but for us it is life. I sat and watched a 3 month old take a bottle this weekend and all I could think about was that Jillian was that age when she got her first tube and by 4months she went to just water by mouth. I knew that some of these things might happen when we went to GI on Friday. I knew something needed to be done. We could not keep going like this, but admitting that you have to go to the next level of care is humbling. I am grateful though that we have this option for care. As I looked though the World Vision Christmas Catalog this week all I could do was cry. Partially because I feel so passionate for some of those causes (the only time I ever got sent to the dean's office in high school was because a girl and I got into a fight over the existence of the sex trade, interesting story...) but also because as I looked at the needs in other countries all I could think about was how if we lived in MOST other countries in this word Jillian would be dead.  She would have starved to death because she could not get the nutrients she needed or aspirated on reflux and died. That is hard to think about. My heart longs for the moms in other countries that are not able to save their child like I was able to with Jillian. I can only imagine the heart break. It's not fair. That simple. Not fair. A part of me was mad that I was able to get Jillian the help that she needs but they can't. The "why me" thought came to mind. Why am I fortune enough? And then my heart went to praise. I'm fortunate enough because God blessed me in that way. I don't know why, but I know who did the blessing, and it is my job/right/privilege/honor to praise Him. So while I might me exhausted after this week. While the thought that tomorrow we add another specialist to the circle is exhausting, we are blessed to have that option! 

The dump truck makes haling her bad around easier :)