Speech eval round 2

As I was putting Jillian to bed last night my comment to Brent was "She did not poop today... we ended antibiotics yesterday, she will now get backed up, we will end doing a lot of things to get her poop and possibly have to take her for the doctor for it, she will start pooping again, we will have a normal few days, then she will start vomiting again, she will get pneumonia and an ear infection, she will go on antibiotics again, poop like crazy for a couple of days and then we will be back here. It's a month long cycle that we have lived in repeat for the past three months... but hey at least there is constancy."  You have to give consistency some credit right?!?!?!

Yesterday we went for her speech eval at children's. We were going to have a GI appointment too but they called on Wednesday and cancelled. We still had to go into GI though and do a weight check.

Last vitals on 1/6:
Length: 28.3in (11.76 percentile)
weight: 9.78 (21.56lb)

Yesterday on 1/31:
Length: 28.7in (13 percentile)
Weight: 9.66kg (21.3lb)

The nutritionist will be calling to let me know of any changes to her diet. From November to December she gained too much weight on the EXACT same diet and now she lost.  We are not sure if the loss is due to her being active or her having been sick or if it is just her goofy digestive system. She has been on the same diet for months and she has never made the same gains/loss any month. Her growth charts in spots looks more like a heart monitor.

Then we went to speech. I filled the speech pathologist about Jillian history. She asked me why we were there for a re-eval and I told her that the gastric motility dr was mad that we stopped oral feedings and he said we needed to come see her. I said that he told me that it did not make sense for her to be aspirating on vomit if she had a good swallow study... her comment "he knows better then that." She just kept shaking her head and talked about a few studies that show that what I was saying was correct. She said she agreed with our choice to pull bottles because of the risk of pneumonia and that she thinks that was a good idea. She felt around Jillian's mouth and said that everything was normal for a child who did not eat orally.
I then spoon feed Jillian 2 small baby spoonfulls of formula. The first one she let roll out of her mouth but the second one she took like a champ. We then tried sweet potatoes. She took the first spoonful and let most of it come back out but the second one she did just fine. We are not talking about much food here. Less then a tablespoon amount total. We then kept giving her the spoon but with nothing on the top. She took it like a child would who is learning to eat with a spoon. She wanted more but we knew not to push it or there would be puke. She did a great job!
After she was done we talk about how she has all the oral skills and that this is a GI issue... what have other specialists said:
Neurology: this is a GI issue
ENT: this is a GI issue
Pulmonology: this is a GI issue
Genetics: this is a GI issue
Birth to 3: this is a GI issue
Speech: this is a GI issue

GI keeps sending us to other people but all of them keep saying that this is a GI issue that is affecting other areas.I was not expecting to hear any differently yesterday either.
Speech's recommendation is that we can give her food to play with at meals but not give it to her to eat orally. That we can do tastes with tiny amounts but not enough for her to get any volume. She said that if she is having trouble to stop.
On the way home from speech she must have vomited in the car because there was orange all over her white coat. About 1/2 way home she started moaning for several minutes. That is not like her at all. She normally sleeps the whole ride home but instead she had a hard time sleeping. When I got home I vented about 7-10ml of orange out. At night when we hooked her drainage bag up we got orange globs out... 8+ hours later. So, typical Jillian motility...

Orange Chunks in the drainage tube

This post made me really nervous. Why? Because I am always afraid that then we tell people Jillian is doing a food trail they will think that she is able to eat. When I talk about her trying baby food I am talking about the fact that she ate less the a tablespoon and she vomited and we got some back out hours later. We are not talking about a sustaining amount of food. We are talking about an amount the still makes it so she is 100% tube fed. We are still talking about less then a tablespoon amount just so that she can learn the skills normal to a kid her age but not take in enough to make her puke. We are working hard to keep food a positive thing and for it to stay positive we have to do what we can so that she does not associate food with pain. I just don't want people to think that because Jillian plays with a spoon that has a little favor on it that she will be off the tube soon or that she is able to eat normally. That is not the case. Food trials are one of the hardest things emotionally for me. I see her in pain. We experience vomiting and moaning. The fears of choking are very present. I can't explain why food tastings like this bring out so much emotion in me, but they do. So, no, we are not any closer to her eating orally for calories, but I am ok with that. I was not expecting that we would be after speech yesterday.  We are blessed that she has a feeding tube that takes care of her need for nutrition. She is well nourished and happy and that matters a whole lot more then eating orally.

She found a Doc blanket on clearance... she carried it through the store

She can be such a ham!

She and daddy were dancing

What is more fun then a chair in a tent?

She loves her dolly

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!

Christmas round 2 and Broncoscopy

Ok, Im going to go a little backwards here. I am going to talk about today first (Monday) and then go back to Sunday.

We got up nice and early this morning and loaded up the car for Children's. Jillian did not love getting up early this morning. We headed for Milwaukee and we got up their early and went to Starbucks for breakfast. Brent and I like to caffeine up before long days at the hospital.
We got to the hospital around 7:30am and got a prime parking spot. We headed over to 4th floor day surgery. It was very quiet in there. We checked in and after a few minutes of her trying to eat my coat we were called back to the same pre-op room as we were in for her first surgery in July.
They started with her med list that for some reason we can not get right in the computer right now.... We got her vitals while the different doctors and nurses came in and out to talk to us. The anesthesiologist came in to talk to us about the risks. I don't think he was expecting people that were so calm. He almost seamed bothered that were so calm. He explained to us that Jillian might need to be admitted and there was a small risk of her ending up in the ICU. We told him we understand that with anything we do with Jillian. He asked if we were sure if we wanted to do this before Christmas with those risks given that we could end up staying for Christmas. I told him we totally understood if we were there for Christmas and we were mentally prepared for it. We truly were prepared for that and it was the least scary part of the procedure. Her procedure was scheduled to start at 9:45 but by 8:50 they were ready and taking her back. She was not sure about the guy taking her back at first but then she was ok with it.
Brent and I then went out to the waiting room. This time we stayed in day surgery. Both of her other surgeries took place on the 3rd floor surgery. We sat in the waiting room. My mom got there about 10 minutes later. While we waited in the waiting room Brent talked with the gas company about fixing their mistake last week. The doctor came out about 30-40 minutes after it started. She said that her nose looked good, a little inflamed but good. She said her cords looked good and did not look floppy like we have thought might have been a problem in the past.
She said they went into her lung and they looked irritated like they were constantly irritated. She said there was also excess fluid in the lungs too. Both indicators that she is possibly aspirating on her bodily secretions all of the time. They took cultures and did a wash of the lower right lobe and took samples of that. They are sending all of the samples to the lab.
After about 10-15 minutes they came and said that one of us could go back and see her. I went back. She was screaming so hard we could hear here from the waiting room. I got back to the room and they were taking the heart monitors off of her. She looked at me and started crying harder. She wanted her mommy. After about 30sec I was able to hold her. I sat down in a chair with her and she curled up and closed her eyes. After a few minutes I could smell poop. I asked the nurse for a diaper and Jillian cried while we changed her. Jillian was doing really well. You could tell her throat was scratchy but she was comfy on my shoulder. A little while later the anesthesiologist came in and said that she was looking great and we would be able to go home today. They then let my mom and Brent come back and they transferred us to a different recovery pod that was our last stop before going home.
We got checked into the next pod and they did vital signs and such. We then cuddled. She went off and on from watching Daniel Tiger and Sophia the First to sleeping. She also hugged her new Doc McStuffins doll that we go for her for today because we are softies. They had us wait for an hour and then they did vitals again and decided that she was looking great and we were free to go. They took off her IV and we capped her ports (they had both ports draining to gravity into a diaper). Brent signed the discharge papers. As we were getting ready to leave the nurse came in with a little pretend camera for Jillian. She said this was the best week of the year to visit the hospital. It made Jillian smile so much to have a new toy. Thank you to whatever random stranger who donated that toy camera. I know a little girl who loves it a lot. It made me smile to see her happy.
The rest of the day she has been so sleepy but is having a hard time taking a nap. She will take a short nap but then wake up and cry/scream. You can tell she is soooooo sleepy. Normally she is in bed by 8pm but tonight she went to sleep around 8 and then woke up screaming about a half hour later and is now playing.
We had multiple things that we were invited to tonight however with it being so cold and Jillian being so sleepy we decided to stay in. When Jillian goes outside in really cold air she starts choking on the air. Strange, I know but that is how she handles it so we try to keep her in cold air as little as possible.

Ok, now lets rewind back to Sunday....

Looking at her new book

Brent got up early and worked on snow blowing for over an hour. We had a lot of snow. We took off for Church. We got there about 20 minutes late because of the slow drive. After church we went to Noddles and Company with my parent's and Brent's grandparents. They are in town right now from Florida. After lunch we went over to Best Buy and helped Brent's grandma pick out an iPad and a case. She has been talking about buying one for months to be able to facetime with Jillian.
Then we headed over to Portrait Innovations to do family pictures with Brent's family. Pictures went fast. Once we were done Brent helped a guy figure out how to tie a bow tie.
We left there and headed home. We called Dan and he put dinner in the oven. We got to the house and worked on getting dinner together. Shortly after we got home Brent's family all joined us to celebrate Christmas. We had dinner and watched the Packer game.
We did gifts. Jillian got a Sofia the First armchair that is her size. She also got a doll stroller and a Sofia movie. As a family we got a years membership to the Milwaukee Zoo. That will be nice because we can stop there for just a little bit if she has an appointment at Children's and it is not a big deal if we only spend a couple of hours at a time. I got my first ever Coach purse. It is a small clutch that is perfect to throw into the diaper bag when I am out with Jillian. Brent got an air compressor for projects around the house.
Overall it was a nice night celebrating. Jillian was so sleepy and by the time everyone left she was headed to bed. Once she was in bed we got the house picked up and the three grown ups hung out for a bit.

Chewing on her new pants

her food bag decorated for today

 So, what do today's rest results mean? Well it means that she is probably aspirating more then we realized. I have been worried about that since she was very tiny. You have always been able to hear her aspirating however no one seamed to believe me because she had one good swallow study.
What do we do now? Well, we find out more on January 6th when we see the pulmonologist again. We are really concerned that they are now going to push for a fundo. That is the surgery that we have been trying to prevent for months. It can make delayed gastric emptying worse and makes it substantially more likely that she will have a tube for the rest of her life. For her digestion track we don't feel a fundo is a good plan but we can keep hurting her lungs. I feel like we are having to chose between two organs. In the battle over stomach vs. lungs, the lungs win. Parents of a one year old should not be having to make the choice of one organ over another. We should not be debating the lesser of the two evils, but I have a feeling that is the choice we are going to be presented with. We always knew there was something going on with the lungs but we just figured it was asthma. Even though I knew this was what the doctor thought was going on, it is still hard to realize the facts. It is hard to admit that there is a lung problem bigger then asthma. Asthma I know how to deal with, this has a lot of unknowns to me.
One good thing we did find out today was that her lungs did not look like CF. That has always been in the back of our minds. We will know more definitively once all of the cultures come back but the doctor said that her lungs did not look like CF lungs. That is a large praise.
Tonight I am tired. I am hoping for a good nights sleep. She is having a hard time tonight at going to bed but I am hopeful that once she really goes to sleep and we start draining her tummy that she will get the rest she needs.
For the next few days I am going to focus on baby Jesus and family. I have always been a family person but this year has brought me even closer to them. This year has brought me to lessons from God that I did not even know existed. I have been stretched in ways that I did not know possible. I can't say that I have always made the best choices this year. I have not always used the right words, had the kindest thoughts, been the most loving but God is teaching me about all of these things; in my life He is using Jillian to teach many of these things. She is one cute vestal of God! The next couple of days I hope to take it slow, enjoy family, and most of all praise the God that has held us though this past year and will continue to hold us for the rest of our days.

Pushing her new stroller

In her new Sofia chair

We stopped at Starbucks before the hospital today so we could get caffeine and she could watch the business people walk in and out.

Grandma holding her

Cuddling with mommy

Watching Danial Tiger

Opening her birthday gift from Rasa

The new toy that the hospital gave her. THANK YOU to everyone who donates to the hospital. It really impacts families!

Doc McStuffins went into the OR with her so she got a name badge too!

Her trying to buckle her new bed

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 :)

As the pneumonia fades

I think we can officially say we are over the worst of this pneumonia! Today we did a neb shortly after she got up and then not again until this afternoon! Huge progress. My mom and I went to a store after church today and we commented on how different a week ago was. Last Sunday she was dazed. She did not make eye contact or smile. This week she smiled when we showed her Christmas dresses. My jilli bean is coming back to being herself. I'm not sure what was up with her at 3am today. She was screaming off and on for over an hour. It was very unlike her and she acted like she was in pain but with the help of grandma she went back to sleep. Something's with Jillian we will never have the answers to, and as long as she does not start screaming like that again tonight, I'm ok with not knowing why.

As a tubie momma I deal with many things that people would consider gross. To me it is normal. Many days we have explosive laxative poop, I will catch vomit with my hands, feet, clothing, ect, I change her g tube pad that is full of drainage daily, and many more odd gross things that don't really bother me. There is one thing that grosses me out. I think it is more to do with a texture then what it is. As we were leaving target today I picked Jillian up to get her in her stroller and she was soaked. I knew we had changed her diaper just a couple bourse before so it was not likely it was pee. I felt around and realized her g port popped open. It must have been open for a while because she was soaked. Her diaper was sagging from all the liquid and her clothes were almost dripping wet. By Just picking her up and moving her to the car my shirt and hand were very wet. This is my gross point. We took her to mom and dads and we both changed. Oh tummy juice, how you burn on skin!

Today we were talking to someone that we had not seen in our family in a few years. They were someone that our family use to spend a lot of time with. We were talking about the last year of our lives. I think it is kinda overwhelming for people to hear the overview of Seth's and Jillian's year. People just don't know what to do. But it's ok. It has been our journey. It is our stuff and everyone has their stuff. Our crazy journey. 

Jillian is getting so close to talking. She is really starting to mimic people. When she gets mad she yells "mom" and today my mom told her to say bye bye and she said " bye bye bye bye bye" we are going to have a talker soon. Right now she loves to make clicking sounds with her tongue and blow raspberries. She is still struggling with hearing low tones but we are still hopeful that she will develop that on her own. 

On a note that is discusting to many people, Jillian's poop is more and more red. I think it had to do with the meds she is on, at least I'm hopeful that's all it is. She also has a yeast infection in her diaper area again. We started to treat it with prescription cream again. Hopefully this time it is easier to get rid of. 

I want to thank all the amazing people in our lives. The people who have the supporting words and kind actions. I don't say thank you nearly enough! We are so blessed. Blessed by people that without this journey we probable would have never know. God uses situations and people to come together and lift each other up while praising HIM. The long nights would not be the same without the encouragement we get. Every Facebook comment, random hug, text massage, blog comment, encouraging word at church or just asking us how we are means so much to us. It reminds us we are not alone. So many of you show us God's kindness and many times have pointed us back to Him in this journey. I would love to say we have always relied on Him like we should but we truely thank those of you who have reminded us where hope come from. God blesses His children much more then we ever deserve but He loves us and out of love blessings come. 

I don't know how to walk with my new toy yet but I'll stand behind it.  :) 

Some weeks you feel like you should just move in...

Man, I'm really trying to be positive, its just a struggle at this point this week.

Jillian has seen a doctor Sunday, Monday, Thursday and we will see one later today. Yesterday she got to meet the new nurse practitioner. Brent took yesterday off with her since Halloween is kinda a big deal in the preschool world so I figured it would be good for me to be at work. Brent called in the morning to give the doctor an update like they asked and at that time she was crying and wheezing. By the time they got there she stopped. One they left she started again. AHHHH! Her pulse ox did dip into the low 90s for them so at least the got to see that. Brent tested her pulse ox at home while she was sleeping and it was 88. Not where we want it to be, hence why they are having us come back in today.

She perks up just before lunch time and then stays a little better until around dinner time when she makes a fast decline again. The only time we can get her into the doctor though is in that time frame, so they keep seeing her at her best and not what she sounds like when we go to bed at night listening to her wheeze loudly.

This whole situation is playing into one of my biggest fears... the fear of not being believed. When I was in high school I got very sick but my symptoms and test results were not lining up. I had a doctor who I think still questions the validity of my illness. A doctor at Children's who had seen this before in teens figured out what was wrong and did something about it. That situation though left me with a major fear around the medical community. I have a hard time trusting that they believing what I am saying. I go into most appointments with the assumption that they are not going to believe me until I prove myself. This fear has carried over with Jillian at times. I dont want this fear to be there however sadly I have dealt with some medical professional that have proven my fear right before. So that leaves me just trying to do the best thing for her. Telling them the facts and bringing as much data as possible to help her.

Chilling with daddy, taking a neb

Happy Halloween

Goodnight world

Today it seams to take 3 people to give one neb, she was kinda feisty

And some days there are little reminders that our life is not normal

and pneumonia continues

I'm snuggling with my baby girl this morning. My super snugly little one is still asleep at almost 10am. She did get up for a little bit and  get dressed and did meds. I then put her in her Super Seat to do her Pulmacort around 8am. I started the neb and she was sitting up and holding it and a few minutes into the neb her head fell to the side and she was sound asleep while doing the neb. I ending up holding her head up until she finished and then I picked her up and held her.
I woke up this morning to her breathing heavy (Brent has a cold or something that started last night so it was like waking up between two snoring bears). I got everything together for her neb and then picked her up and started the neb. She slightly opened one eye and then went back to sleep. She normally is up at 6am and this was just before 7. She also normally gives herself a neb and this morning I had to hold it for her.
Today her cough is worse then what it was. In the cough department I feel like we are moving backwards. I am hoping that it just means that she is getting the junk out of her lungs... I can be hopeful right?!?!
I called the pediatrician's office around 8:30 and talked to the nurse. When we picked up her Palmacort yesterday they told us a dose that was different then what the dr had told us so I just wanted to double check. I also expressed my concern that Jillian is still struggling a lot at times. She agreed that we should not be needing to do nebs so much at this point and we should not hear her breathing as loudly. She said the doctor gets in a little after 9 and she would talk to her then.
The nurse called back around 9:30. She said that I was correct in following the directions from the doctor and not the pharmacy. For a child under 12mo it is only 1/2 a vile of Palmacort. She asked if we had a pulse ox meter at home. I told her no. She then said that they wanted to add an oral steroid to try to help her kick this. She said they were going to call the pharmacy to get the script filled. We will head out in a couple of hours to get it.
It is 10:20 now and she is up and sitting with some toys. When all the meds are fully kicked in she will be smiley and play. She is still hanging out in one spot and not going really far. I can hear her breathing from about 5ft away, but at least she is happy.
We are going to keep her home from school for the rest of the week and we are hoping that by next week she is good to go back.
Yesterday she had 4 small poops. Today so far she has had one really small poop and I think I heard her working on more.... It has not been loose since that one poop on Monday afternoon. I'm glad she is not dealing with massive diarrhea on top of it. Her poop is going between a light yellow and a dark auburn color. It is normally a light yellow.
We will see how it goes with the new med. Hopefully it is the key to helping her kick this. I'll update more later.