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

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 :)

more yellow spew

Yellow, my current least favorite color. I can't say I have ever had a defined least favorite color before, but it is definitely yellow right now! Why yellow? Well it leads back to the two Jilli P's.... Poop and Puke!

Everyone sleeps with their head arched back from reflux right

Poop:
Yup, Jilli poops yellow... interesting...I know! Probably more information then you wanted to know. (Sorry if you are eating while reading this) This week Jilli's body has decided that pooping daily, while on laxatives is not necessary. I however disagree and so does the little girl who spent an entire day pushing out liquid poop. I kept getting up last night to her moaning and grunting. The poop finally flowed this afternoon. She had not had a good poop since Monday. Getting her to poop at all is a balancing act. Too much laxative and it is everywhere all the time... too little and there is nothing. And we are talking about a 0.1ml difference some days however the magical number in the flow vs explode equation is a changing variable. This is oh so convenient. Magic number tomorrow... who knows!

Puke:
Today Jillian graced the world with more yellow highlighter puke. Still not sure what it is about. I know it is stomach juices, but why are they randomly joining us outside her body? I guess it is a good thing we see GI at 8am. She was fussy most of the day today but I am not sure if that has to do with the neon puke this afternoon or the poop situation or if she is getting sick again or if I need to call and get her on antibiotics for her ear. Where is a magic eight ball?
She was at daycare when the yellow came flowing out the mouth and her teacher got her and came to see me. A different teacher was also in the room and asked why I needed to know about the puke and why it was a big deal. For most babies it would not be a deal at all if some stuff came out of their mouth however for a baby who does not eat it raises a little concern.

sleeping in her bouncer

On a different subject (but still Jilli related) I got to talk to the insurance company tonight. I went online to check to see if the claims where finished processing from having them all reprocessed from our out of pocket max not kicking in when it was suppose to. What I found (other then the old claims not being done yet from the 3rd of the month) was that for the past couple months they did not pay for Jillian's pump or pump bags. They paid for it in the past. They paid for a surgery to have a tube put in. They pay for the syringes to put meds into the tube... but not the pump to put food into her or the bags to hold the food. AHHH. So they are going to review it... it should take 7-10 business days... We will see.It has been more then 10 business days since the last review and it is still not done. Of course my phone cut out when the lady was looking into the last  review and I just could not handle going through their automated system again tonight. So I'll call them again tomorrow. I think I talk to people about medical bills more sometimes then I do with people that have deep relationships with.

Coughing, yellow puke, insults, back arching, stablizing, bath, and new pump

Finally gave in while mommy ate

The past few days have had a lot of little things going on...

Coughing:
Jillian started coughing on Friday. Her allergies are bothering her and her nose is running. Friday night into Saturday was long because she had a NASTY cough again. It is one of those coughs that wake you up and scare the crap out of you! Luckily by the next day her cough did not sound as bad although every time she coughed she would cry. Poor little one. Allergies just sneak up on her and kick her butt!

Yellow puke:
Sunday morning Jillian was sitting on my parent's white carpet all dressed for church. Brent was about to hop in the shower and I was getting ready. All of the sudden yellow liquid cam spewing out of her mouth. A LOT of it! I felt like we were back in the days of her eating bottles. It just kept coming and coming and we were grabbing everything we could to catch it since we are not as prepared for eruptions any more. I had time to go into the kitchen, get a bunch of paper towel, walk back to the living room and still was catching more that was coming out. It was a mess! A 80's neon yellow mess!

Puke on her clothes... it was on the white carpet too

 I called GI because we have never had puke like this before. They called and said they think it is because she has a runny nose and that we can give her a neb treatment if we want. She has had 1 neb treatment before in the ER back in March but if I am going to do a neb treatment at home I would like more info then to just do one over the phone. I know how to do neb, I own my own nebulizer, but she is a baby. I also don't keep the standard neb meds in the house because I take something that is a higher dose and more pure. We will see how it goes.

Insults:
I have heard little comments before from people that were not kind about Jillian. Most of them have been from strangers that don't know better so we take time to educate them. I find that most people are so kind about Jillian's tube and we have only had a few awkward situations while out with Jillian and most of them have just been people staring at her for a really long time. This weekend we were at a family function and someone who is closely related family said some of the most hurtful words I have ever been told. They crushed my heart to a new level. A few people in the family suggest every time we see them that Jillian would be "better" if we just let her eat... AHHHH. Sometimes I wonder how many times I have to explain this. Saturday the comments where taken to a new level! Someone had the audacity to infom me that they don't think I have tried hard enough to get her to eat... WHAT? Oh hun, you are sadly mistaken. The party was in a park so I excused myself to take Jillian on a walk. We came back about 20min later and then was told that she probably does not eat because she does not like what we give her and if we just gave her donuts she would eat... WHAT! Man, this was crazy! We then left. I do not need to be attacked like that! I have heard other mom's complain about people's awful comments but I never thought I would hear them. I have always known that part of our family thinks I'm crap, but it is a different thing for them to actually say it outloud! I am trying to figure out what we are going to do about this. We have educated til we are blue in the face. We have told them what is going on with Jillian. What do we do now? How much is enough even though they are family?
With all of that crap on Saturday afternoon, Sunday God brought me just the people that I needed to see! He is amazing that way! I have always had a a few extra sets of parents and I was surprised at Church on Sunday that they were there! Sometimes just the comfort of being with someone is enough! We hung out with them and had a lovely lunch with them and some other people from Church. It was amazing! Their son is who I learned about tube feeding from. I use to baby sit him when he was little and did tube feeding and feeding therapy. Knowing this family has made all of this easier and not as scary! It ended the weekend with a smile!

Back Arching:

back arching from reflux

Saturday night I forgot to give Jillian her acid reflux meds by mouth so they needed to go into her g port. I gave her 1.3ml of meds and a 5ml flush of water. This caused back arching and tossing for over 30min. I am going to have to talk to GI about this next week. She seams to have a lot of pain anytime we put things into the g port.
On Sunday afternoon Jillian started screaming. Not crying, screaming at the top of her lungs for an hour. I vented her g port and that seamed to help. I am not sure what the problem was.

Stabilizing:
We have been using two ace wraps to hold Jillians tube so it does not move. Saturday night we went and walked around Gurnee Mills and then got dinner. At dinner she was very fussy. We noticed that the rolled ace wrap was missing. We ended up using her ear thermometer that we keep in the diaper bag as a stabilizer with the other ace bandage wrapped around that. Who said we can't be creative!?

securing PEG tube with thermometer

 Bath:
Jillian has stated to love bath time! Yeah!

New Pump:
On Wednesday night I on my way home from work I called med supply to order more supplies and to see if we could get an Infinity pump. We currently have a Kangaroo Joey and I love how user friendly it is however it is not able to tip and is bulky in comparison to the Infinity. They said that they stock the pump and that we could switch. They delivered the pump on Friday and a nurse is coming out to teach us how to use the pump tomorrow morning. I am actually a little sad to be giving back our Joey but I think this will be the best move for Jillian moving around. They also sent us a new backpack for the Infinity that is super small and will fit Jillian really well (it is too small to fit me)

Snuggle time with daddy and George

Hospital stay #5

Wednesday started early like any morning at the hospital. As the nurse said the "scouts" (med students) where in early (6:30). Around 7 was rounds. The nurse had told me the night before that round where different on this floor. They are a lot quicker and about the facts not about digging in deep. Rounds lasted about 5 minutes (can last up to a half hour on other floors).
The nurse came in and said that we would be be able to do the EEG in the room YEAH! A tech came in around 9:45 to do the test. By this time Jillian was sleepy because we made her stay awake after rounds in case they said we could do the EEG. We kinda broke the rules for this because Jillian should have been woken up at 5 but because we did not know if it was happening or not at that time we did not want to bug her. She was barely awake by the time he came in anyhow and that is what they wanted. She was not a big fan on getting all the wires attached to her head but she did not scream. The tech finished attaching them and then he left the room for the test to take place. We left Jillian in her crib for the test and she fell asleep very quickly. Brent worked on work and I blogged. The tech came back in after 35min and said he needed to wake her up to see how her brain acts waking up. She woke up calmly and started talking. He took all the stuff off her head and left.
We hung out and I went down and got Brent and I lunch from the cafeteria. Around 1 her nurse came in and said we should give her a sponge bath before surgery. She started bathing her and the head nurse came in and said surgery had just called and said they were sending someone up to get Jillian. It was almost 2 hours before we were expecting to go down. We got her bath finished up and by that point someone from surgery was there.

With EEG probes on

We walked down to 3rd floor general surgery and were put in the same holding room as the week before. Doctors and nurses came in to talk with us. This time they did not use Versed to make her loopy first. Around 2:30 they came in and got her. It was hard to not cry. Someone came over and got Brent and I and walked us to the waiting room. After about 40 min the surgeon came out and told us his part went great and that radiology was in at that time converting it to a GJ. The second part of waiting felt like forever. Around 4:30 they came in and said one person could go back. I went back and Jillian was sleeping. They said that she had fussed a little but that she went right back to sleep. It was nothing like her coming out of the first surgery. After a few minutes they said it was time for her to go back to her room.
We went back up. She slept the whole way. We got up to her room and they checked her out again. She was so out!  Someone from x-ray came up to do an x-ray to make sure the tube was in the right place. He said he needed to do a chest x-ray. I knew they were looking for farther down but... He put the x-ray thing under the mattress, this is when the momma bear claws almost came out. He was not gentle AT ALL!  She was just out of surgery and he was messing with my baby. She gave him a stink eye and went back to sleep. He went and asked the staff if the pic was what they wanted and low and behold nope they wanted one that showed lower... where the tube was. He redid it and left.
My mom and I went and picked up dinner for us and when we got back Dan was there too so the 4 of us had dinner while Jillian slept. She wanted pain meds around 10:30 and then we went to bed. They kept doing diaper changes during the night to make sure that she was hydrated and they made her upset. She is not use to diaper changes during the night and bending to get the diaper under I am sure hurt! Around 3am she needed more pain meds.

In Surgery holding

Around 6:45am people started coming in and asking how the night did. At rounds we were visited by the on call surgeon. He said she looked great and he might send us home that night. Around 8 we got milk started again at 15ml per hour. Around noon we bumped it up to 30ml per hour and caped her IV. She was taking it great and only wanting pain meds every 4-4.5 hours. We tried to pick her up around noon but it hurt her too much to be held. She finally let me hold her around 3.
In the afternoon we were visited her GI dr. She looked at her and said she was doing great and that she was happy. At the same time the discharge person came. She was in charge of making sure we got the correct supplies from the home delivery company. A little while later someone from nutrition came in. She told us we would be bumping Jillian up to 48ml per hour now. We said on plain breast milk right.... no, it seams that the nurse we talked to last week had not documented that change. No one was sure where that came from and she said we needed to go back to fortifying to 24 cal.
Around 3:30 they came in and said they would be discharging her soon and gave us her script for oxy to be filled at the pharmacy. Brent went down and got it filled. Around 4:45 the nurse came in with the discharge papers. We signed and packed up our stuff. We got out to the car around 5:30. We got in the car and headed home.
When we got home Brent's parents and brother were waiting for us. Dan was making us dinner. We gave her meds around 10:00 and went to bed. She slept until I got up at 7:30 to pump. I pumped and she played. I went downstairs to put the milk away and came back up and she was asleep again. She slept until around 10 when I went and woke her up because her milk back had run out. I realized that she was still in her diaper from the night before. They might say 12 hour however they dont really last that long. There was pee EVERYWHERE! I picked her up and ended up with a wet shirt. I got her cleaned up and got all the wet laundry in.
Jillian and I hung out during the day and got some things done around the house. In the afternoon I went to change Jillian's diaper and looked at her incision. I noticed that how her tube was laying was pulling on the incision. In the hospital they did not show us how to tape her tube so that it did not pull, I only knew that the way it was pulling was a bad thing because of all the reading I had done before her surgery. I then figured out that her tube was going to have to stick out more and then come back down. I struggled how to make this work. Dan got home and noticed me sitting on the floor getting upset and had me call his mom for help. We talked it through and I made it work. That night I posted to Feeding Tube Awareness asking if anyone had a better idea of taping. I am still working on getting it just right but I think it is better then it was at first.
We packed up once Brent got home and Dan and I took Brent's car into Kenosha and a while later Brent left the house in the van with all of his DJ gear. When we got to mom and dad's my dad's side of the family was there eating tacos. My grandma makes these amazing home made taco shells out of corn meal! Food gathers the family! We got to catch up with people and even had Napolian for dessert! We headed to bed late. Jillian only took 3 doses all day of oxy for pain. She is so strong!
Since she has gotten home she has randomly been puking drool. It is coming up with a lot of force. I'm not sure what is up with that. I'm watching it to see what is up and if I need to call GI. 
Friday med supply also came. They brought a TON of cut 2x2 pads (we have pads from KangaRoo-tique so we don't need these), a large box of cotton swabs and 3 extension tubes for us to try and the last 5 bags we are allotted for the month. Other then the 5 bags, I'm not seeing the need for many of these things...
I want to thank some amazing people for there help last week. First, my mom for all of her help! She came the first night and brought me dinner and helped give Jillian a bath. She brought me dinner each night in the hospital! Thank you to Dan for searching the house for bear even though it was in the car :) It is a true friend to turn a house over for a little girl's bear. Thank you to all of the people for the phone calls and texts and facebook messages of support. They mean a lot!

I'll update about our weekend later. Right now I have a little girl who has only taken a few little naps today so she it sleepy and a house that NEEDS work because in the last two weeks we have only been home a couple of days so it has been the dump and run. Goal of the week: find this house again while Jillian heals!

July 19th, 2013

Whirl wind day 2!

Jillian did not sleep well the night of the 18th. Doctors started coming in around 6:45am. They checker her out and looked in her ears. She still had so much wax they could not really see in them, but she hated them touching them...
Rounds happened mid morning and Dr. Adrian Miranda was the floor doctor right now. I liked him a lot because he really seamed to know his stuff. Rounds to me is kinda funny because it is interesting to watch the residents report to the attending. The current resident was timid and did not look at Jillian's case too much before rounds so I helped him out. The attending asked some questions about Jillian. I explained that she pukes hours after she eats sometimes and I finally had a good conversation with someone about the possibility of delayed gastric emptying. We talked about the Fundo option that surgery had brought up the day before. The GI dr was on the same page as I was about it. He said we know the J feeds work so lets let he get bigger and figure a few things out before we do that. He took it as a teaching moment for the students. He asked what at the three main times you dont want to do a fundo, they did not know so he helped them: 1. if they have cp (Jillian does not), if they have a mitochondrial disorder (we still have not ruled that out), or if there is anything neurological going on (we go for an EEG on wednesday). That puts her 2 strikes down. He said that if the later two end up to be true of Jillian and we did a fundo that puts her at high risk of it failing or her getting gas bloat syndrome. Gas Bloat has a lot of complications with it! It means all the extra gas builds in the stomach making no room for food and a lot of pain. He said it is a nasty disorder that is painful to watch. Right now I feel like with all the unknowns of Jillian we are not ready to take that risk when we have something that works. 
We talked a little bit about her vomit. She can eat something and puke it many hours later. The dr said that 1/2 of you food should be digested out of your stomach an hour after you eat it and she should not have any to come back that much later. We talked a little bit about delayed gastric emptying (another reason to not do a fundo) and what we would need to do to check for that. We decided that at somepoint we should test for that.
We then talked about the test scheduled for the day: the PH study. He asked the team why you do a PH study. They said to see reflux. He said that with Jillian's case we know there is reflux. He talked about the reasons why a ph test is best and that for Jillian it is fine to give us some baseline numbers but that it would not really tell us anything but since we were stuck there anyhow we might as well do it.
We hung out for a little bit and then someone came in to place the ph probe. It is kinda like an NG tube with sensors. As she was telling us about it the attending GI walked in. It seams that she was trying to do the test out of the way of prodacall and there was a little tension in the room them. His partner left the room, came back into the room, the two doctors then left and the first woman continued. Then they came back in the room and asked to speak to the woman. During this time the woman from Child Life came in and asked if we needed anything for Jillian and said that we had made a good job making the hospital room like home. She left and my in-laws came in to visit. Then the doctors and the woman came back in and explained that they would not be doing the test because we would be sitting in the hospital just for the test and keeping her on IV fluid when she did not need to be and that they would be placing the NJ back in and we would be going home. I have a feeling they figured out during that time that Jillian would not fit into the OR schedule that day. Also, the hospital does not place NJ tube on the weekend so if we did the ph test Jillian could not get the NJ tube put back in until after the test was done. Well the test takes 24hrs and that would have made it done part way into Saturday. We would have then had to keep her in the hospital on IV fluids until Monday. We decided since the test was not a big deal to not bother.
Around lunch time they came and got Jillian to place the tube in intervantional radiology again. Jillian was not  a happy person about having it placed again and was very crabby. We took her up to the room and brent went to get food from the cafeteria. She and I were on the floor playing while I ate my lunch and in one fell swoop she pulled  the tube part way out and shoved it back in. I called for the nurse. The nurse and a med student walked in the at same time. The nurse started helping and the med student had come in to see about discharging us be decided that we needed to go back down to make sure the tube was still in a good place. About 40 min later we went back down. Jillian had actually pushed it into a better place then it was before!
We went back up and the dr came in and asked what we needed to go home. I said I wanted to make sure the tube worked before we left, have her ears checked again and talk to the surgeon. She looked in her ears and said they were still too full to see anything. She said we could do a tube try for a bit and agreed that was a good plan and said that she was not sure if the surgeon would have time for us but that if her did not she would have him call us.

We got the tube set up and then we packed up and started to get ready to leave. We where just about to sign the discharge papers when the surgeon came in. We talked about the options again. He said that we had two options. To place the GJ tube now, and then do a bunch more tests because he thinks we need to figure more things out, or figure more things out then place the tube.  We said we want the tube placed now. He said he would have his assistant call us monday to set it up. We were then discharged and hit the road.
Overall it was a long day with her. She did not sleep much at night nor during the day. We did have some happy time with her new toy though and she did like not having a tube in her nose. 
Now we wait for the phone call again... I just keep reminding myself the HE must have a plan in all of this timing. There has to be a reason!

Walk-in and a new passy!

Friday night I slept on the floor, thankful that we got rid of the old, yellow, shag carpet that we use to have, however the wood floor we put down is not super comfy. Jillian kept coughing and then she would spit out her passy and cry. We did this all night long. She was probably a bit off too because her rock-n-play was getting washed because she peed all over it the night before. It was a loooooooong night at our house.
Saturday morning Brent went to go get a snow blower from his Aunt Linda (THANK YOU!) because they are moving. Jillian and i headed into Kenosha so mom and I could get our nails done. Mom and Jillian were hanging out first and mom bent over to give Jillian her passy and messed up her calf so we went to the walk-in instead of nails. I figured while we were there i would get Jillian checked out for her nasty cough. The nurse weighted Jillian (18lb, 6oz with clothes and wet diaper) and took us in the room. She said that she was not sure they would do much for Jillian because of Jillian's tube (something I have heard from multiple dr. and many tubbie parents complain of). The dr came in. She looked at mom, and said that she needed an MRI but they dont do that at the walk-in so go home. She then looked at Jillian. Listened to her breath. Asked me about Jillian's tube and gave her antibiotics. I felt like the dr was unsure what to do with Jillian's cough so she just threw Amoxacillian at us. She never looked at her nose, ears, throat ect... AAHHHH. Yes my kid has a tube, but that does not mean that she does not get ear infections, croup, ect that need to be looked at a treated like a regular kid.
We went to mom and dad's and hung out. Brent came in a joined us and we ordered Chinese for dinner. We watched to original "Yours, Mine, Ours." Jillian had her first time sitting in the bathroom full of steam since we forgot her humidifier at home.
Jillian decided that her bedtime was midnight... another time of coughing. She woke up this morning coughing too. Brent and Dad were out to church early so it was the thee girls this morning getting ready... limpy, sneezy, and me :) Jillian kept puking large amounts of flem. I was known for puking a ton of snot when i was little. She needed a change of clothes before she got out the door. 
After church we went out with Brent's parent's for Debbie's birthday. She loved Jillian's new photos. After lunch we went to Babies R Us. Then we came back to my parents. They watched Jillian for a little bit while brent and I went to the Jelly Belly fair. We went last year and Brent and I rode the Farris wheel. I feel very strongly that Farris Wheels are very scary, but I did it for him. He asked me to go again with him this year so we went and this year there was no Farris Wheel (YEAH ME!) so we got some jellybeans, and had a lemonade shake up and a funnel cake. Then made a quick stop at Goodwill then headed to my parents. Brent headed back to our house and Jillian and I hung out with my parents. Jillian got her bottle around 8 (it is hard to remember sometimes to feed a child who does not care about eating). Within 5 minutes of eating she had a substantial size puke. She started coughing more so I decided I would put her in the steamy bathroom again. After she sat on the floor for awhile I turned the water temp down and let her sit under the water. She LOVED it :)
She has continued spitting up gunk all day but nothing like this morning. He cough is a little bit better today, we will see how tonight is (I am so hoping for sleep). Right now she and grandpa are walking around the house and she is just about asleep. Tomorrow we have an appointment to get the van new brake pads (hence why we r still in town)
We are working on moving her to a new type of passy. I want to get her using one that is better for teeth. She is not sure about it but is taking it.
Well, she is asleep for the moment... I'm going to try that too

The ER, the clinic, the home

Sunday:
Sunday mornings bring some lounging time at my parents house before we have to leave for church. Time to read the paper and the sale ads. Jillian and I were moving a little faster then normal because Brent had spent the night at home after moving Dan in and was coming in early to get breakfast with Jillian and I. Around 9am I stopped Jillian's pump to give her meds. Connect the water syringe, push, nothing moves, push harder, nothing moves, give it everything, water sprays at me... Clogged line! We try all the tricks and then Brent gets there. He tries a few times and then we decide its clogged and we are not going to be able to unclog it. We throw some stuff in the car (forgetting my pump parts however, but we remembered my pump), left my car and most of my stuff at my parents and hit the road. You make good time at 9:40 on a Sunday morning.
Made it to the ER and they were not busy at all. Infact we got a close parking spot. If you have ever been to the children's ER you know it is impressive to get a parking spot at all in the ER lot. Got checked in and they took us right to a room. Dr and nurses came in and looked at her. They decided they would try club soda because the carbonation can sometimes get it unclogged. We waited for the soda to come up from the kitchen and then tried it. Waited a hour to give it sit time and then tried again. Still no luck moving anything in, but people were getting showers of any liquid we tried. Jillian was being such a trooper! She was smiling for everyone and being a ham. She did not like it when they would try to plunger the tube and it seamed like that hurt her, but as long as people kept their hands off the tube she was happy! I love that about her. Around 3pm they gave up trying and paged the interventional radiologist to come in. We were lucky because we have always been told if it clogged on the weekend we were stuck in the hospital til Monday because the radiologist does not work on the weekends, however he came in on Sunday! Normally when they place an NJ tube there are a lot of people in the room, but since it was a Sunday they only called in the radiologist and a lab tech, thus meaning they needed more hands to be able to place the tube then they had on staff. So Brent suited up in a zebra print led vest and white paper jumpsuit and joined in the "fun." Normally on a weekday they have parents wait in the waiting room, but today there was no one in the tech room so I got to hang out there and watch the screen of her insides as they placed the tube. It took about a half hour of her screaming for the tube to be placed but at last it was over. When they handed her to me so Brent could get undressed she grabbed on like never before. We went back to the room and they had us do the first 15ml of her feed to make sure it worked and then let us go home a little after 5. We were exhausted.
 My parents packed up all of our stuff from their house and drove my car out to our house and brought us dinner. It was so nice to get to bed!

Monday:
Jillian and I hung out during the day. We ran to Target and Walmart, one of her favorite things to do! At night Jaime and Jason came over for dinner and we all celebrated Jaime's birthday. It was a lot of fun!We are looking at getting Jillian a special kind of belt that will go under her clothes to hold the extra tubing coming out of her tummy after surgery. We found a company that looks to have really nice ones at a good price and hundreds of fabric options. Jaime and I spent a little bit of time picking out what fabric we thought would look best. We also were picking out fabric for these little disks that you put around the tube that help soak up any drainage. She is going to have a styling GJ site :)

Tuesday:
The day started with a trip back to Children's but this one was planned. At this point we should just own a house there since we have been there three separate days in one week. This time it was to see the genetics department. We caught them up on what is going on with Jillian. She has been doing this weird thing lately where we can not get her attention and she looks blank. You can get up close to her and make faces and be a goof and she will not look at you. You can make loud noises (brent dropped a pan) or call her name and she does not move. It lasts for a few minutes at a time. They are concerned about possible absent seizures and are referring us to neurology. They also want us to check in with audiology to make sure her ears are still good. They said that I need to call central scheduling for both appointments and that neurology is backed up. They said she does not need to go see them again for a year unless things change. They said that normally someone with just a feeding issue they would dismiss but with her other things (she still does not roll over) they do not feel comfortable doing that.
After the appointment we stopped at the mall for lunch and then went over to Buy Buy Baby. We were looking around and noticed 2 of the next carseat I want for Jillian sitting in the clearance section. I am a big person on research when it comes to carseats and all baby products. It started when my like brother Howard was born. I wanted to buy just the right gift (I was in middle school) so I started researching. Well between the time of Howard and Jillian I still loved researching baby products. I am very picky in this area. Car seats for me are no different and I have spent a lot of time researching what one to buy when Jillian outgrows her's soon, so when I noticed 2 of the one I wanted in the clearance section I was really happy. I looked all over the boxes which where kinda beaten up and could not find a price. I then found an employee and asked them about the car seat price and they looked at me like I was crazy talking about car seats in the clearance section. They looked at them and then asked around to find out that they had just been set there hours before when someone was stocking shelves and no one put them away. Bummer! With the condition of the boxes I doubt they will sell them for full price, but they were not willing to give them to me at any discount for the messed up boxes that day. I then looked at the car seat mirrors, the reason for the trip and they were way overpriced so we left.
Next stop was Babies R Us where I knew they had a car seat mirror for a better price. Jillian has only been in Brent's car a few times but one of those was this weekend on the trip to the hospital and we noticed we did not have a mirror in there to see her in the back seat and that was a pain. I wanted a new mirror for my car that was lighted and we would put my plain mirror in Brent's car. When Jillian starts screaming it is so nice to be able to look back and see if she is screaming because she is a baby or if she is pulling on the tube and about to take it out. I walked all around the  store and was only finding a plain mirror or one that lit up if Jillian touched it, and that would not work because how am I going to convince a 6 month old who is screaming to turn on a light so I can make sure she is not pulling her tube out. I figured I would just get the plain one again. I stopped at a clearance rack on my way out and noticed that tucked behind everything was the lighted mirror that I wanted on clearance $10 cheaper then Buy Buy Baby had it! I grabbed it and checked out. When I went to pay for it another $4 came off plus Jillian had a gift card! I love a good bargain!
We then hit the road before Milwaukee traffic got too icky and came home. We had Tacos for dinner and we all hung out. Jillian took a 15ml bottle and puked a large portion back. She showed us how good she is getting at sitting and we had fun playing on the floor and reading books before bed.

Wednesday:
Jillian was up a few times during the night moaning and it continued into the morning. Eventually I just got both of us up. I got her dressed and gave her meds and then she fell back to sleep. I figured I would get some of the clothes cleaned out of my closet while she slept. I had to wake her eventually so we could go to work.
At night she was kind of fussy. She did not poop all day so I am not sure if that was the problem. She is all messed up again after missing Sunday's laxative. She also has buds for 2 more teeth. Im not sure what the deal was but she would be playing for a few minutes and then scream.  Brent was out with a friend but Dan was a huge help! He got her meds for me when she was screaming and got me a rag when she puked 1/2 of her 15ml bottle up. She did find it a fun game for a few minutes to be sitting and playing and lift her legs and fall  over. I was working on ordering something online and would grab her and lesson the fall. She thought this was so funny until one time I was not as quick. She was on a thick blanket on a rug so I knew she was fine, I think it just stunned her. Brent got home around 10 and she was wide awake. He took her for a little bit so I could get a couple of things done quick. We put her to bed sometime after 10:30 and she still fought us. We were up multiple times during the night again with her fussing. Not sure what this is all about... the mysteries of Jillian.

Thursday:
She slept and fussed off and on all morning. I gave her extra laxatives since she had not pooped in a few days and I figured it was making her belly hurt. She spent the morning playing on the floor naked because I figured when the poop came it would come with force. It finally came around noon and did not have as much force as I was expecting but it did smell like a skunk was loose in the house. Alumentum does some bad stuff to the air when it comes out. I spent part of the morning trying to make dr appointments. I got the audiologist appointment scheduled for July 9th. I tried to schedule the neurology appointment but she has to be referred to them first and genetics did not do a referral yet so I sent them a message letting them know we needed the referral. Jillian thought the hold music was funny while I bounced between all the people. She is so goofy sometimes like how she just fell asleep on a book while doing tummy time today.

Surgery has been set for my birthday, July 18th. We wish it was sooner but glad we dont have to wait too long. Day surgery is suppose to be calling me with the instructions for surgery prep. I guess birthdays are just the time for her to be in this year since she was in for Uncle Seth's, Aunt Jaime's and now me. PS Jillian, we can make other plans for ur birthday :)