A perspective shifts... for tonight

Tonight I was making formula for Jillian and lamenting that I got nothing done today. Yes I did spend time on Facebook and Pinterest today... but did I really get nothing done? Then I stopped and thought about my day. What had I done?

• I went to Target and got stuff for home and work
• Jilli and I spent around an hour at Walgreens because suddenly the state did not remember that we no longer have Cigna insurance (which ended in July, and I called the state about it before it happened and have picked up multiple prescriptions for Jilli since it happened) It took an hour to get this all sorted out (to no fault of Walgreens) Jillian was an amazingly good girl during this time. She enjoyed taking selfies on my phone (I have about 20 pics of Jillian's forehead) 
• I did a load of laundry
• I unloaded and reloaded the dishwasher... and started it :)
• I curled up on the couch and cuddled with my little girl and watched her favorite show
• I worked on Jillian's speech homework with her
• I made dinner (and ate it)
• I worked on some stuff for work (school starts soon, I can't help it)
• I picked up the bathroom
• I got Jillian dressed 
• I changed multiple diapers today (including a poop one... yeah for poop coming out sometimes!)
• I filled Jillian's feeding pump at 2am (Brent did 6am), 10am, 2pm, and shut it off at 3pm.
• I gave her water flushes into her J port multiple times today
• I give her medications multiple times today
• I made formula

So even though  I had to step over toys to get to my lap top to write this... I did still do something today. No, I did not get a room organized like I wanted. Or move my office stuff from the guest room to Dan's old room, no, but I did get stuff done. I need to give myself a little slack sometimes. I think that it is only a productive day if I run at full steam all day, but I need to give myself credit for everything I do, day in and day out. I think it is an American thing. We don't seam to give ourselves the credit we deserve for doing the little things. It is very much a society problem. If you are not going all the time you are viewed as lazy. There does not seam to be a middle ground any more. As a society we have forgotten the 7th day.. Sabbath... thinking that we don't need it! So, for tonight, I am going to cut myself some slack for only accomplishing that list. Yea, I still have hundreds of things to do, but it is ok, I deserve some time to chill too! :)

I dare you to do the same thing too!



I have lots of photos like these:

August genetics appointment

I tired emotionally today. There has been a blessing in being crazy busy with work stuff the past few days... It has made it so I have not stressed out about seeing genetics. Funny after genetics today I am more stressed about the genetics appointment then before..

Here is the genetics plan right now:

1. Head CT. We have to sedate her for this so we are trying to get that figured out. Based on that will determine if we go to see Nero again. We are trying to be able to do her tube change and CT at the same time. I am really hoping for something amazing with scheduling. Finding me a Friday afternoon where we can do both of those things... I know I am asking for a lot but it would be best for her.

2. State insurance will not pay for genetic testing. They said she is a candidate for genetic sequencing. Paying out if pocket will be in the $12,000 range. For now her blood is sitting frozen in case we decide to do that test later. 

3. Jillian got bloodwork drawn today to check her carnatine levels. They submitted a script for a supplement in case it is low. They will let us know next week if we need to start it or not. That med will need to be taken 3 times a day...

4. The muscle biopsy is still on hold. This frustrates me. Do I want to send my kid back in the OR... No. Do I feel like we are going to end up doing the muscle biopsy eventually...yes. So I would really like to stop putting off the inevitable. I know they want to exhaust all of the least invasive options first but isn't there a point where the least invasive option is doing the "more invasive" option because the help that it will give the child will be the best thing?
5. The doctor told us that if Jilli gets any bad colds/viruses or high fevers this winter to call their office and they will most likely preemptively admit her for IV fluids and such. I am hoping to not need it at all but it feels good to have a plan in place for the inevitable.  It is frustrating to take Jilli to the walk-in clinic sometimes because Jillian does not present a typical case and sometimes I bring her in before all of the wheels fall off the wagon so they do not do much for her and we just have to sit at home and wait until she gets sick enough to be rushed in. He agreed that we should not take her to local hospitals but instead get an ambulance transport up to Children's. As I sit here and write this it kinda hits me. I have a kid that is in a health situation that justifies us making plans like this with doctors and making prearrangement was not our idea, but theirs. It is rather a humbling thought. We kinda just live the day to day and do. We don't stop often to look at all of it or the intensity. Honestly, we can't. But when we do it kinda hits you.
6. We see genetics again in December. This is where I started to get crabby. I want this process to move faster. By the time we see them again she will be 2. That will mark two years of this crazy without a lot of answers to the why. What is the underlying cause. We have a lot of "band-aids" holding it all together... kinda. She is not in immediate danger like she was younger, but the balancing act of her body functioning is held together with a lot of patches that kinda get us by day to day. It would be great to have a treatment plan for a condition instead of treating the symptoms. I want to get this moving so we can do the best things for Jilli. I feel like I am on a slow boat that I could row faster. Jilli is making progress developmentally but it is at a very slow rate. She was officially diagnosed with apraxia this week. That kinda spells out that it is going to be a long slow road for speech. The geneticist was impressed that she has made some gains so he is not as rushed about that but I don't think he understood the amount of work that it is taking to make each little tiny gain.

So that puts me at the point where I am glad we have some plan, because no plan would have really made me mad, however I don't love the speed of the plan.

On a side note, we got to meet a med student today. He was shadowing in the genetics clinic. The poor guy was so scared. The doctor asked him if he would be the one to look at her ears and the poor guy looked so frightened. I told him that Jilli was a good test person for looking in ears because she thinks it is funny. Hopefully doing an ear exam on Jilli makes him more willing to try more... however we kinda spoiled him with an easy one today.

Today my mom and I went shopping for dressed for my cousins wedding. I finally found one after looking at many stores. We found Jillian one too at an amazing clearance at Jaine and Jack.

Now I think I am ready for bed. This next week for me is the equivalent of a retail workers week before Christmas... the most busiest time of the year for teachers. School starts in a little over a week!

Jillian's New bed- The Comfy Lift Bed

I have been saying for a while that I would write about Jillian's new bed and I am finally getting to it.

Because of Jillian's stomach issues she refluxes her own nature body secretions. Some days are worse then others however nights are hardest for her. If Jillian lies flat she refluxes even more. When Jillian refluxes she aspirates when it tries to go back down. When Jillian lies flat she spends a lot of time coughing and choking.
When Jillian was first born they put her little bed in the hospital at an angle because she was vomiting so much. The first night she spent at home she slept in her bassinet (the only night she slept it in... know anyone who wants an almost brand new bassinet?) By Jillian's second night home she was moved to a Rock and Play. It was great because it was at the angle that she needed. As Jillian became more mobile however the rock n play became less ideal because she was trying to get out of it. We found the DayDreamer when Jillian was around a year old. This was a perfect new solution for us because the DayDreamer sits on the floor. It worked great for us (and still does when we stay in hotels, ect.) However we knew that even though Jillian is not really growing right now that eventually she would grow out of the DayDreamer.
I started researching different types of sleep solutions for Jillian months ago. We tried the crib wedges they sell at the stores. For a kid like Jilli they are junk. They have no where close to the suggested 30 degree incline. We did find an adult reflux pillow that had a larger incline, but still not at a 30 degree. The problem with these wedges is that Jillian would just slide down and end up flat at the end of the bed coughing. Jillian and I would spend the whole night up with her choking. We tried putting an inclined pillow on each end of the bed but that did no good either. I was starting to think Jillian was going to sleep in the DayDreamer forever.
I was researching one night and from the Feeding Tube Awareness website I found a link to the Comfylift bed. This bed is at the same incline as the DayDreamer and has supports at the feet so she can not slide down.
We had been debating back and forth when we were going to buy her the Comfylift bed. It is not cheep and it was looking more and more like it was going to need to be paid for out of pocket.
One week I made my to-do list and on the list was that I needed to figure out a plan for buying her bed. Before I called I checked my email and it caught my eye that Zulily had a special need's sale going on. I opened it up and there for sale... $300 off was the Comfylift bed! I was floored. After a few phone calls I ordered the bed. I arrived in the mail a few days later and we gave it a try that first night. It used twin sheets so we let Jilli go to Target and pick out the sheets she wanted. If she has to sleep in a special bed she might as well get to pick to pick out fun kid sheets for her bed. She picked out Doc Mcstuffins sheets.
The first night was long. It was her first night sleeping in a bed that did not strap her in. She is able to roll in this bed while still keeping at an angle.
As the days have gone on she has gotten more use to her new bed. It is perfect for her. It says that it is for kids 1-5 years and I am hopeful that it will last that long. It is a great bed.
Overall I would recommend it for any child with extreme reflux or a tube fed kiddo. It is a great bed. We are thankful that someone thought of it so our little girl is able to sleep in a way that is healthiest for her. 

Jillian inclined right after being born

Jillian in the DayDreamer

Jillian's first night in the rock n play

Jillian at 11 months old in the rock n play

Jillian's only night in the bassinet

Trying to keep her inclined while she rests on the couch

Her new bed! The comfylift bed

Jillian sleeping in the comfy lift bed. She is comfy in it :)

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.