Cold days = Play days

I am so blessed that I was able to spend Monday and Tuesday this week at home with Jillian. Monday school was closed because of drifting snow and Tuesday because of the snow. Well for those two days I got the best gift I could have asked for... time with Jillian. It was amazing. We had not doctors to run to, no place to be. We spent two days in our pajamas. I was able to get somethings done I did not otherwise have time for and was able to spend time with my girl.

Don't notice my hand holding my tube... right???

Oh... and now let me look at it.

OHHHH

Hi mom

The Daniel Tiger Theme song came on... its amazing!

Just so sweet!

Look its a Mickey book

Time to close my book

Peek!

No, I was not just in a bucket

Lounging in my highchair on the floor

Its princess time

Look, its a diaper

OHHHHH... diapers are funny!

I just spotted that mommy left my pump out of its bag

Its my pump... I need to explore this

No I read big books!

I found another diaper to play with

Our little doctor

Bath time!

Making a feeding tube backpack

I have wanted to make Jillian a new backpack for her feeding tube for a while because:

1. The standard backpack does not look little girl cute
2. I wanted a spare that she could carry when her other backpack needs to be cleaned (milk spills, poop, ect.)
3. Her black backpack fell apart last week with a big hole that is not going to be easy to fix

So this weekend I pulled out my sewing kit and modified a backpack.

Supplies:

1. Small backpack. We found one on clearance at JC Penny several months back for less then $10. It is Minnie Mouse and super cute and the straps fit on Jillian and me!
2. Black thread
3. A swivel Hook  . I got this one from Joann Fabric. If I make it again I am going to find a swivel hook that is shorter in length, but this one works. 
4. 1 inch strapping . I bought it by the yard but you can also just buy a package. You only need a couple of inches of it.

I choose to hand sew it. I own a sewing machine however this was such a small job that it was easy to just do it the old fashion way.

1. Make a loop of the strapping around the fastener of the hook. 
2. Sew together the strapping just above the hook. You want this part tight. All you need is the simple basic stitch that they teach you in middle school.
3. Sew the strap to the top of the back of the backpack. 
4. That is it! 

 Man, I don't know why I have pushed off doing this for so long. Now I am going to look at making a second backpack for her to have as a back up. The trick is finding a backpack that is small enough for her to wear and carry.

Clip in modified tube feeding backpack

Inside her tube feeding backpack

Mom, the medical assistant

Wednesday Jillian's sickness started to really turn the corner. Thursday we were still doing nebs every 4 hours and she still sounded rattly, but today she has not had a neb yet. I feel like we have conquered this illness.  Life with Jilli, as with all kids, is a balancing act. We always dance the line of when does __________ illness/problem need medical attention. It is hard to figure out a lot of times. I was talking yesterday with someone at work and we were commenting on how many of the parents blame fevers/runny noses/coughes/ect on kids cutting teeth. It is the go to response and I would bet that over 95% of the time that we are calling parents to tell them that their kid has a fever or something else and needs to be picked up that it has nothing to do with teeth. Kids get sick. Yes, teething causes issues, but trust me it is not to blame for everything. We were joking that if I chose to blame stuff on Jillian's teeth that she would be dead because with her common things get bad fast.
I feel proud because I feel like this time we caught this at the perfect time. I know for most people their child having to miss a week of school due to illness would not be catching it at the perfect time but for Jillian that is impressively low for time spent sick. I knew it had to get to a certain level of "bad" before anyone would do anything for her,  but the trick is for it to not get so bad that it takes forever and days in the hospital to turn around. Her lungs were cloudy and headed for pneumonia but she got on good drugs before it got that far. This time we stopped the perfect storm of upper respiratory problems mixed with a stomach that cant handle drainage. There will be more in the future that we will probably not catch at just the right time, but I'm going to celebrate this one, because man, its hard to figure out the perfect time to take her in. 

In other news...
Today I got to help change Jillian's j tube. It is a good thing we had it scheduled for today because the end/cap for her g pot has been hanging by a thread and sometime during the night it came off so I had to use tape to keep the world from being covered in her tummy juices.

That should be attached to the g tube port

We got there and in the process of getting to IR I think they could have paid me for showing people around. I must have really looked like I knew what I was doing because every time I turned around someone was asking me for directions. Luckily I have been to many places in the hospital and knew which way to point each person. (Ok, that is a little odd/sad, lol).
When we went to check in they were having a hard time finding her appointment in the system but when they called IR they knew we were coming. A nurse from IR came to get us. We went back into this area between the different IR rooms. I was thinking as we drove up how medical this area of the hospital feels. I know we are in the hospital all time but that place is decorated to not look/feel like a hospital all the time. This area does not have anything to make it look less hospital. The walls are white and there are a lot of big machines. 
The nurse asked if I wanted to go back into the room with Jillian for the procedure. Brent went and helped once but I never have. I suited up in a white whole body jumpsuit and a heavy apron. I got to walk Jillian in and put her on the table. I showed them were the g port broke this morning and they got the stuff to fix that part.
Jillian fussed off and on before it started but once they got going she was fine and it is pretty quick. She just looked at the wall for most of it. As long as she did not look at the guy in the room she did better. She has a thing about tall, thin, males in lab coats. They said her tube looked pretty clean on the inside compared to most. I complimented Jillian on making it to a routine tube change. It is the first time she has gone 3 months without a problem with her tube. It normally clogs beyond unclogging or falls out about 6ish weeks in so making it three months like it is suppose to it a big deal. They were also talking about how cool her belt was and I told them where we got them. I LOVE her belts. They make keeping the tubing contained so much easier.
After it was over we headed back out of the room and I got all my fun clothes off. We had to stop back at registration because they forgot to do something and then we were on our way. It is always so nice when tube changes go smoothly.
After we left Jillian and I hit the mall to pick something up quick and then headed home. During the afternoon Dan hung out with Jillian for a little bit so I could call billing departments at different places that there are issues. I love it when I call someplace and they have no idea why we were sent a bill for something that our insurance already paid for. In the evening Jaime and Jason came over and we had such a good time hanging out and laughing.

In other news... her next round of testing has been scheduled for March 5-6. We are excited and nervous for this.

My ear is not bothering me... I'm just sticking my finger in as far as I can for fun

Daddy got me a new toy... Then pretended to arrest me with it!

I dont want this neb!

I think I am all that when I get to play with kitchen stuff

The January Sickness

The house has been hit by a bug. A coughing, sneezing, yucky bug!

Last Tuesday night it all started. Jillian would lay down, fall asleep for 10-15min and then wake up screaming. We did this until 12:30am. (It started around 10pm). We had no idea why she was screaming but with some Tylenol she finally slept for longer then 15min but was still up multiple times during the night.
Wednesday she was not herself. She just kinda sat at school all day. She did not do much. By the time we got home she had a 99.8 temp. The night started the same way. She would lay down, fall asleep for a little bit and then scream. Again the only way we got her to sleep was with Tylenol.
By Thursday morning she had a 100.3 temp so Brent stayed home with her. During the day she vomited 7x. We are not talking about a little spit up here. No we are talking about forcefully puking that starts with coughing... then starts gagging... then forcefully vomiting.... and ending with more coughing. We are talking about over 2+ ounces at a time. You can her her breathing in while vomiting, which is how she gets aspiration pneumonia. Now what does a child who has nothing in their stomach vomit? Well, a lovely mixture of stomach acid, liver bile and mucus. Her stomach can't handle anything in it. When she gets sick she gets mucus that drains into her tummy just like everyone else. The difference is that most other people can handle the mucus, but she can't so she vomits everywhere. Her lungs are also filling with mucus and she vomits (just like I did when I was little) to get the mucus out. This is making for a lot of vomit right now. She normally spends a good amount of time during her day swallowing reflux of stomach juices but at this point she is normally able to keep it in. By the time she went to bed on Thursday she vomited 3 more times.
Friday morning stated with vomit around 4am. Uncle Dan was able to work from home and take care of her. I was able to get off of work around 12:30 and come home. While Dan and Jilli were home in the morning I got to use my Christmas gift that Dan bought me... a house cleaner for a few hours to deep clean the house! When I got home I took over taking care of Jillian and she and I hung out. I was not feeling great with a runny nose and she was just exhausted. It was really good that I was home because during the afternoon I passed an ovarian cyst and had a hard time doing much.  She continued puking and needing nebs through the day. Her temp got up to 101.1 during the day but by night it had dropped. She also started to refuse her oral meds on Friday. She would clamp her lips shut and try to slap the syringe away. Most of the time when we would give her a med she would vomit. Sometimes right way and other times up to a 1/2 hour later.
Saturday morning started with 4am puking again. We all slept in a little and then got up and got a few things done. In the afternoon she purked up and was acting more like herself, although still vomiting and refusing some of her meds.  We were hopeful that the worst was over.
Sunday morning started the same with vomit around 4am. Brent had to be to Church early and Jilli and I were at my parent's house. She was still puking and pushing meds away. We were still doing nebs every 4 hours. We decided that it was time that she was seen. Mom and I took her to the Children's walk-in clinic on Mooreland road. We got there right as they opened at 11 and we are lucky we did . By the time we were walking into a room they were telling the people that were walking in that it was over an hour wait before they would be taken to a room! We did her weight which was off because she had all of her clothes on. I kinda wish I had made them do an accurate weight because I feel like she has lost weight in this sickness. We went to the room and the nurse did her vitals and her history. Her pulse ox was around 92. That is not where they want it. The nurse went out and I could hear her talking with the doctor. The doctor ordered a chest x-ray and a neb before she walked in the room so we could get those done as soon as she was done listening to her. She came in and listened to her lungs. She said that you could hear wheezing from her one lung and the other one was rattly. She left the room and the nurse came back in with the neb. As soon a the neb was finished someone from x-ray was there. Jillian hated getting the x-ray done. We walked into the room and she took one look at the machine and started to scream. I think she associates x-rays with tube changes because she normally grabs onto her tube and screams. The rooms do look similar. We got back to the room and her pulse ox was still only at 93 so they did another neb. The doctor also ordered some Prednisone  to help with her lungs. A while later her pulse ox was back to around 91. Then she started to do the cough.. gag.. and then she vomited everywhere. Once she was done vomiting her pulse ox went up to 96 so they said we could go home. The doctor said the x-ray was cloudy but not pneumonia, just and upper respiratory infection. They also put her on an antibiotic for an ear infection. We left and mom brought Jillian and I back to our house. That evening my mom came back and we all had dinner together and mom spent the night.
Monday morning started the same with vomiting around 4am. My mom had the day off because of the holiday so she hung out with Jillian and Brent and I went to work. She slept really late and continued to need nebs every 4 hours however she was not puking as often. By the time I got home from work she was in a good mood and playing. I was hoping that all the meds had kicked in and she was really doing better. She even managed to unsnap her pajamas, pull her tube out of her clothes, open the g port and was chewing on the J port. It was hard to get her to sleep but by 9:30 she was out. I hooked up her pump and gave her a neb at 10pm. I could smell that she had pooped s I changed her, did her meds and she went back to bed.
Tuesday morning started out the SAME way with coughing and puking around 4am. Have I mention that 4am and I are NOT friends right now. Luckily I got up to her coughing and was able to catch what came out. Brent gave her a neb ad we watched some Full House while we tried to get her back to bed.
This morning when I got her up she had pooped everywhere. Then I went upstairs to get her drainage bag and somehow during the night it sprang and leak at the bottom so there was next to nothing in the bag but the floor was soaked. I looked over at her at one point this morning and noticed her g port was open and the little silicone piece that holds the cap on is hanging by a thread. Luckily we get that changed on Friday, so until then it is taped. A little while later she was sitting on the floor and all the sudden a volcano of poop starts flowing out of the top of her pants. Right now her poop is lovely with all of the mucus. Needless to say it has been eventful around here today.
She is in a good mood today and will play for a while and then just get so winded from playing and will just have to sit and breathe for a while. You can still hear her breathing across the room. Right now she is taking a nap and she keeps squeaking while breathing.

Her doctor's office called me on Monday because they had gotten a report that we had been at Children's and wanted to know what was going on. I filled them in. They called me back a while later and said that the doctor wants to stop doing any shots for a while since she always seams to get really sick after. It is like her body cant handle the knock in immunity so then she gets every little thing and they really kick her butt.

Right now I am not sure of the coarse of this illness. I feel like one moment she is starting to act more like herself and then the next she is crashing again. I think if she is still not doing better by tomorrow she will need to go see a doctor again because at that point she will have been on steroids and antibiotics for 4 days. We are trying to be patient and wait this out but we don't want this sickness to get out of hand. So we will see what tomorrow brings and just hope that we sleep past 4am...

Just so exhausted

I'm sleepy

Cinderella Baby is good for keeping company during nebs

The boys holding her over the sink while she vomits. She vomited through the dish towels I was holding so this was the next closes thing

The walk-in gave her a backpack full of books that someone donated!

Her current meds minus the one she had already taken

Yup, thats poop

Mom... do you have to take my picture now!

A little grump, a lot thankful

I'm in a very deep mood today. I'm not sure why. I have a head ache on top of that because Brent and I went and picked up our new glasses yesterday and it is taking a bit for my eyes to get use to the new prescription.
This morning I took Jillian to the doctor to get a shot. I am not the biggest person on shots. I know they have helped kids live longer and better life and overall kids not getting Polio and such is good, however I just have a hard time putting one more things in her little body. On top of the I am very allergic to what they make shots in. Almost all shots are made in an egg or latex base, and I am allergic to both. I stopped getting shots around 3rd grade as my egg allergy got worse. I have had two shots since then and both times I felt like I was going to die after. As dramatic as that might sound, the one time I really thought I was just going to die. I could not move and I felt so week. It was horrid. This makes my personal view on shots not so great. From the get go we decided that Jillian would only get 2 shots at a time because we did not feel her little body ever needed 6 things injected in her at a time. The reason they cram them all together is for the ease of parents, but I'm not worried about how many times it takes to go back. Well, we started off with 2 at a time, but Jillian's body has a hard time with that. Each time she would get 2 shots she would be in the hospital 10 days later really sick with something. The shots just knock out her immune system. So we dropped it down to one at a time at least 2 weeks apart. She still gets sick, just not as bad. I have gone round and round with multiple doctors about this and most of them think I'm nuts but this is the way it is. Either this way or no way. On top of that, if she is having anything big coming up we try to stop shots 15-20 days before hand so she can be better before we do a big test. Right now she has a long list of 1yr shots she needs and we are trying to get them done before her next check up, but with that she has this motility testing coming up at some point soon and she can not be sick AT ALL for that test to take place. No cough. No runny nose. Nothing. I feel like I need to put her in a bubble.
The one good thing with shots is that she takes it like a champ. She might fight us every morning to do her inhaler however she cried for about 5 seconds today after her shot. She just is not that bothered by them at least.

Even with having to take Jillian for a shot, I love days like today. I work 4, 10 hour days each week leaving 1 day to cram in every appointment we need. That leaves 4 days a month to try to fit everything in. That thought has been just exhausting to me lately. Jillian was just referred back to speech and the doctor would like her to be seen regularly. We don't find out what regularly means until the 31st of this month, but I have a feeling it is going to be more then once a month. We worked with a speech therapist before that I loved at Children's but she has Fridays off and that just so happens to be the day I have off most weeks. While my job has been amazing at trying to work around what day I need off, it is just too hard to have to move it around all the time. The problem is that none of her doctors all work on the same day of the week. There is not one day in the week that is golden. No matter what I have to change stuff up making it harder for work and harder for my coworkers and I hate doing that to them. I use to be the employee that never asked off and was always to work 15 minutes early and would stay as long as I am needed. Now I ask off all the time, take off for weeks at a time without notice and have to balance when I can start and leave work around her feeding schedule. Most days that leaves me feeling like an awful employee.
With the feeling of being an awful employee you mix in my heart's desire. I LOVE being a mom. It is what I have felt called to be for a LONG time. When I was little I always talked about wanting 12 children, and while I am not that crazy anymore, I still love being a mom. I love it despite the doctors, and never sleeping, and waking up to yellow bags of stomach bile on the floor, and living at the hospital at times, and the fact that the feeding pump has it out for me today and that I don't get to spend the same time with friends... I love it despite. I would not change ANY of those things if it meant no Jillian. NONE of it. I will take not sleeping and medical stuff and less time with others. It is ALL worth it for her. Every second of every day. Every tear, every pain, every sleepless night is 100% worth it for her. It is all worth it if none of this ever changes. If in 15 years I am still getting up at 2am every night to fill her pump, it is worth it for her. This is all worth it for her.
My heart's desire is to love Jillian and help to raise her to be an amazing woman of God. I am blessed to have Jillian in my life. I know that she is His, and I get the joy of being her mom. Being a mom is a huge job. Being Jillian's mom feels like a job that there will never be enough hours for in a day. I struggle because days like today are what I feel called for. As much as it is not fun having to watch a needle go into her leg, I got to spend time with her today and I loved it. This is what I would love to do with my life. When people ask what you want to do with your life, for me, I'm doing it.
But that puts me back to tomorrow, I go back to work and work another 10 hour day. It is not that I don't love my students, I do. I strive for the best for them. I celebrate with them. I care about them so much. I love when they learn something new or even when they learn a hard life lesson. I am privileged to be their teacher and I don't take that for granted. They are only 4 and 5 for so long and this is a time when they learn so much. The hard thing is my heart is torn. As much as I love them, I want to be devoting more my time with Jillian. This is something I have been praying about for months, but it is not the right time yet. There are parts to that equation that don't work out right now. Jillian comes with a lot of expenses. Brent and I have been working on getting rid of our debt over the past year however, every time we have knocked out a bill another new Jillian bill comes in. We pay off a credit card, and then she starts on a new perscription that costs the same amount per month. At the end of the day that money is still accounted for. I was seeing this as frustrating. I was feeling like we would never get ahead, but then I stopped to remember that God provided that money. He helped us to eliminate one bill so that we could pay for another, He provided. Instead of being mad that it is not working out my way, I am choosing to be grateful that we have the money to pay any bill at all, even if the same allotted money is just moving from one bill to the next.
I spent some time praying about all of this today. Extra time to pray is one of the great things about days off. As I was praying I was reminded that I have prayed this same prayer before. I thought back to the times in my life I have prayed for something big and I had to wait on it. Finding a husband, getting married, buying a house and getting pregnant have all been huge things in my life that I have had to wait in Him for and looking back I can see his hand in all of it. I can't say that those have been some of the funnest times in my life, actually they have been some of the hardest most gut wrenching emotional times in my life. But I made it. I am still here. I did not explode. God walked me though. It all worked out in His time. Honestly if I had a baby on my time I would not have been able to handle all of this. But God knew the exact time for Jillian to come. Did that make waiting easier... honestly, no, but I did learn a lot. I am not sure why I am learning the waiting lesson again. If you would have asked me, I thought the last trials of learning that lesson were good enough, however there must be something more I need to learn.
So I wait again. I wait for the timing to be able to stay at home more with Jillian and be a full time mom. In this time I will try to continually choose to listen to Him for the lessons. He has a timing in all of this. He has a plan. His plan is better then mine, I guarantee it. He put longings on our hearts and I firmly believe that He does not put them there to taunt us with something we desire but can not have. He is not some giant bully in the sky dangling candy in front of our faces and then pulling it away when we get close. There is a reason that I want so badly to stay home with Jillian and in His time it will be fulfilled.      
So in the mean time I will cherish days like today. I will go play with my little one. I think I will go change her diaper too because something just did not sound good...


I will wait and rest in Him.....


and hopefully I will listen!

The times

So this week I made a new sheet for all of the people that take care of Jillian. I make them so everyone knows how to best take care of Jillian. Over the past year I have made several of these sheets with revisions of her different needs. Today I took a walk down memory lane and looked at some of the old ones. Here is a look at some of them. If you click on the picture and then right click on it and hit view picture, you can read what it says. It is easiest to view on an iPhone or iPad. 

The first one

April

August

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!

Information about fundos

Tomorrow we brave the bitter cold to head to Children's for a long day of doctors. It will be a day of discussion and a day I feel rather overwhelmed by. I am trying to stay calm and just be as prepared as possible.
One of the big topics that we are anticipating right now is going to be about a surgery called a fundo. I don't have time as in it is after 11pm to go into all of the details about fundos but I wanted to link a few articles that I have found interesting in looking up info for tomorrow's appointments.
As of right now, Jillian shows signs of delayed gastric emptying/motility disorder.

Difference between acid reflux and motility disorder

Questions to ask before doing a fundo

Fundo and feeding tubes 

Pro and Con of Fundo and kiddo stories

I know there are some big medical terms in these. If you want more info about the terms let me know and I would be happy to explain them. I just wanted to give you all the opportunity to look at some of the articles we are looking at about the fundo surgery so others can see why we are thinking what we are thinking.

goodnight! 

New Years 2013/2014

On New Years eve we ran to Racine and Brent and I got our eyes checked. They were over an hour behind on appointments and then Jillian freaked out when they started to do my eye exam. In the evening we did our normal feast with my family. My parents, brother, Mike and Nette, my grandma, and the three of us all gathered around the table and talked about the best parts of the year. Jillian stayed up until a little after 11pm! The rest of us headed to bed a little after midnight. My grandma ended up spending the night because it was snowing so much.
On New Years day we woke up and had an eye bake for breakfast. Then we all played the game Truth Be Told. We had some potato soup for lunch and then the three of us headed to Lake Geneva and picked up some diapers and some groceries. Then we hung out at home and Dan installed a gate in our livingroom entry. Overall the past two days were a lot of fun. I'm not ready for break to be over yet!
On a side note, her diaper rash is looking yucky right now. We are putting cream on it again to hopefully clear it up. Now that we know what it is when it comes we are able to treat it a lot faster. 

Look, I'm trying to stand

Arrr.. I'm a tubbie pirate

Daddy, you are too silly for me to look

Look! Daniel Tiger is on!!!

In her new tutu from Auntie Jaime

Can't throw the last little bit away!

Cuddling with grandma

Playing with blocks

Lets see how many DVDs I can take out while they watch the game