Itch, itch, itch

I called her dr at 8 this morning and she is out of the office this week so they transferred me to the Waterford clinic. They said the alternet ped had an opening at 10:30. 

We got there and jilli is deffinatly not herself because she would not smile at anyone and normal she finds it her job to brighten everyone's day. 

We got back to the room at she was 21lb  (watch out IR dude, the scale Saturday said 9.5g... Almost to the magical 10g). She had a normal temp. 

The dr came in the room and we talked about the walk in visit. He fixed some of her meds in the computer and he said he did not know why they did not fill the Zyrtec because the book he has says it's ok for over 6mo. 

He then took a look at her belly. Here is what part of it looks like today: (she was moving around a lot so the photo is kinda dark and in the shadow of her tube. It is red in person not brown)  

He was like "wow, that's a rash!" He looked at it a little bit. He then evaxmined her lymph nods and they were a little swollen. He look in her ears and they better. He said that he is not sure what this is. That it does not look like anything (allergies, eczema, chicken pox, ect). He said we can continue to give her the Benadryl and antibiotic incase one of them will help. 

She has also developed the runs :( she just keeps poopping out liquid that is ending up everywhere. It is not a lot at a time but it is just so loose. Her super seat is currently needing a wash from it... 

The dr said he thinks she can go to day care tomorrow because she does have a fever but he can't guarantee it is not contagious because he is not sure what it is. 

She is super fidgety and having a hard time sleeping. She is still coughing today and the dr said she is quite congested. She is also getting 3 teeth in. 

This afternoon I also scheduled her feeding eval. We are doing that next Wednesday the 9th. We will see.   

Bumpity bump bump

Hello rash. We are not sure why you came to visit Jillian. We are not positive what you are, but we know we don't want you staying around. 

Saturday: 

Sunday: 

It is not as bright red but it looks more painful because the large patches just look raw and like they are opening. 

We took her to the walk in yesterday. They said that it is a nonspecific rash... She does have an ear infection that they put her on antibiotics for. They said her throat looked red but tested negative for strep. They also prescribed Zyrtec incase it was an allergic reaction. 

Brent went to pick yup her prescriptions they said they could not fill the Zyrtec because she was too young. The pharmacist called the dr and they agreed on Benadryl in a small dose with the agreement we would be very careful giving it to her. Allergy meds are not to be given to kids before 2 because of some bad side effects that could happen. We are to only give her a little to see if it works. 

You can tell it itches her badly.Dispite  the rash on her abdomin her diaper rash is looking better. We are still putting yeast infection cream on it. 

You can tell she is not feeling great today. She fought a nap until after 3. She has been coughing a lot. While drinking her bottle tonight she kept gasping for air and refused to finish it. However if you were to meet Jillian for the first time today you would think she was fine. She is still pretty happy (not as smily) and kind of clingy. But she takes everything in stride. She is one strong girl! Our little fighter!

At little shattered glass and a little spilled milk

I will start this off by saying we are all ok. 

I came out of work on Thursday to a cracked windshield. Im not talking about a little crack, no, it looks like someone took one of those kids Spirographs to my window. It is an interesting looking crack... just not very good for driving. Especially not for driving with a 9mo old. Dan was close by so he came over and we moved Jilli's car seat to his Jeep while we looked at it. I called one window place in Elkhorn and left a message. A little while later Brent got there. We looked at it a little more and the boys decided that the crack was not all the way through so I drove Dan's Jeep home with Jilli and Dan drove my van. Today I spent the morning calling around to glass places. Most places have not called me back. The one place could not do it until at least Monday (even though they had the glass instock). Finally we found a place in Kenosha that will do it for $135 at 9am on Saturday. We just have to get the car there. The funniest thing about this whole thing (finding the bright spot) was that someone else was parked next to me at work. They had seen my windshield about an hour earlier when they arrived. They were surprised that I did not know my window looked like that because they figured I drove to work with my window like that... ummm no! 

Today while calling a ton of places I noticed Jillian's pump bag was wet. Sometimes it is a little damp because of the bag "sweating" because we put very cold milk in there, however I have never felt it this wet. I opened it up to find milk all over. The top had screwed on funny and was leaking! I took everything out of the bag and cleaned it up. I still need to wash the bag. I got one of her other pump bags (this is why we have more then one) and set her up again. The bag that got wet was the only one small enough for her to wear though so for today she has a leash that only goes so far... sorry babe!

In everything last night I forgot Jillian's cream for her yeast infection at work. Dan went and picked it up for me today! The rash is starting to look better. There is one spot on her leg that still looks pretty bad. She keeps trying to scratch it through her clothes and diaper. We have been trying to air it out some, however she hates not having a diaper on. She will even try to put a diaper on herself. Oh my sensory girl!

I feel like I have seen her grow so much in the last week! She has started trying to pull up. She has been talking more. She is doing things with more of a purpose. She is growing up so much. She is almost 9 1/2 months old. She is getting so big. She is crawling like crazy so her body is starting to shape like a moving kid. She is so smart!

This week she started crawling around the living room. Until now she has stayed on the rug in the middle of the room. Her exploring got her into some trouble. Brent broke a glass in the livingroom the other day and thought he got all of it. Well leave it to Jilli to find it. It was under her pack-n-play in the corner of the room. She got her hand under there and found it while I was vacuuming the room. I looked at her, shut off the vacuum and ran over to get it. By that point she was already putting it in her mouth. When she noticed I was coming she took it out of her mouth. Luckily she only got a tinny cut on her thumb. Brent cleaned it out (she did not even flinch when it was being cleaned). It is fine, but it scared us. I have been trying so hard to make the house safe for Jilli but I guess no matter how hard you try some things will still get past you. Oh the life of a family with a baby on the go!

Jillian has had a yucky cough again for over a week. I really dislike this cough! It is defiantly ones of those worse at night coughs that wakes you up. She is sleeping in her rocking chair right now (it has straps and such). It is helping her sleep better. I think for her the crib might not be the best thing for her to sleep in yet. I know, for most kids it is the best and safest place, however Jillian is seaming to need to be more upright and even with putting wedges in her crib, it is just not enough. She is sleeping a lot better, even with a cough, being more upright. Maybe crib sleeping will just have a wait a little while longer...

Today Jillian and I enjoyed watching a new Daniel Tiger. She loves that show! The theme song comes on and she gets so excited (well, she has a thing about theme songs, so loves How I Met Your Mother's and Big Bang's!) Today's show was about how it is ok to be different and it had a little girl on it that walked with braces and crutches. It was really cool! These are the messages that I want Jillian to learn, that being different is ok. I'm glad she likes a show that teaches good things and is not just a killer of brain cells. We typically only let her watch TV for medical stuff or if she is not feeling good, but this was a good exception and we were lucky enough that I was off today for the episode.

We also spent part of the day dealing with medical billing stuff. With the world of technology that we live in I would think that there would be less errors, however I guess when you have as many claims as we do in a year, there is bound to be problems.

Believe it or not, with all of this in the past couple of days, I'm still in a good mood. Stuff happens. Car windows brake. It stinks. Takes time and money, but Jilli and I were not hurt. Bills and spilled milk are inconveniences, but not that big. My devotional lately has talked a lot about relying on God for peace. He has been granting me peace. So you just do the next thing, cause what else are you going to do? You could be crabby and angry or just go with it. Today I have been wise enough to seek His peace in doing it all... hopefully I will be as wise tomorrow....

Little bit of this and a little bit of that.

First time at the pumpkin farm

So I have not posted in a week. It has been kinda a long week and on top of that my laptop corded ended up bent and had wires that were exposed and I did not realize how bad it was until I plugged it into an outlet and we lost the power to that part of the house, it made a bright flash and a lot of smoke... Add to that a laptop that has a very short battery life and you end up with no posts.
Last Friday I was diagnosed with a sinus infection and the doctor gave me a 10 day supply of  antibiotics and a refill in case the infection was not gone by the time 10 days was over... thats never a good sign. Well 8 days later this infection is still going! On top of it this week I got a stomach bug. Oh well. I think lack of sleep and a little stress might be playing a roll in not being able to kick it.
Monday Jillian went to her Ped for her 9mo check up! On their scale she was the exact same weight as last month at GI. Her doctor looked her over and said that she looked good and she got 1 shot. :(
Wednesday night we had some family time and went for a walk in the park and to Target. That night she started up with the seal cough again. She had a hard time sleeping. The cough continued through Thursday and Friday we ended up giving her a neb because she just could not stop coughing. That seamed to really help and cut down the coughing a lot.
Friday morning the three of us went to GI. I have to say I was a little nervous! Big appointments make me nervous for the couple of days before because I feel like there is always a little bit of uncertainty. It takes work to mentally prepare for them.
Friday when we weighed her she was up 2oz since last month! I know that is not very big compared to other weight gains she has made while on J feeds but I was worried she had gone down a little so a positive number is good even if it is small!
When we got into the room we found out our normal nurse and nutritionist where gone! This sent me into a little bit of a panic. To be completely honest, those two are part of the reason we go there. A different nurse came in (that we had an interesting experience with inpatient before) and a different nutritionist came in. At first the nurse asked us some odd questions (like we are always asked "safety" questions inpatient but never at a clinic visit... today did we look like gun all over our home?) They then asked us about how the last month has been and I filled them in. The nutritionist asked if Jillian was on any vitamins. I told her no, but that we were wondering if she should be. She said she and the doctor would talk about it.

Hiking the Pottawatomie trail in Lake Geneva

When the doctor came in Jillian let her pick her up! Jillian is starting to trust her. We talked about the choking on nothing and how scary last Friday was when she choked after crying. We talked about the test results from the gastric emptying scan and how Jillian clinically commonly shows the opposite of the results. We talked about how Jillian needs laxatives daily to poop. The doctor then said that clearly she has a motility disorder. A name to this! The definition of a motility disorder from the Children's website is: "condition where a person's nerves and muscles in the gastrointestinal tract are not working together correctly. Typical symptoms of a motility disorder are constipation, a swollen stomach, pain, nausea, vomiting and diarrhea." Jillian has everything on that list except a swollen stomach (most of the time) and diarrhea. This make sense because it means that everything is not coordinating together the way it should. Yup, sounds like Jilli! For now at least, the name does not change anything. It gives a name to her symptoms however the coarse of treatment she is currently on is what we will continue for her.
The doctor looked at her diaper rash, which has come and gone since she pooped out the stuff they gave her for the gastric emptying study. She said it looked like it has turned into a yeast infection. That made since too because she has had a funny smell around her tube site a hew times this week and they said it might just be one giant yeast infection so she is now on a med for that.
She looked at the tube site and said that it looked alright. She asked when she was moving to a button and we explained the conversation with the head of IR. You could tell she was trying to keep professional and said she guessed it was fine to wait until December. I'm positive the head of IR never sent anyone notes like he said he would...
We talked about what to do when the breast milk runs out. I stopped pumping over Labor Day weekend, however we still have a lot left in the chest freezer. I wanted to have a plan in place for what to do once that was gone. She said that she would go to Elecare. That is an amino-acid based formula that is broken down even farther then the formulas in the baby isle. It is for kids like Jilli and has a price for kids like Jilli... around $45 a can and when she switches to just formula a can will last us 3 days! Ouch! I told my dad that we are doing are part to keep hist Abbott stocks healthy!
We also talked about vitamins and decided that we would add one to her tube. They are going to send a scrip to our mail order pharmacy.
The dr. also decided that she would like Jilli to be evaluated by the feeding team again and would be placing a referral in for that. She has not been evaluated by them since April so it is probably a good idea! We will see what they have to say.

In the afternoon I called our insurance about an issue and asked while I was on with them if they would cover Jillian's formula. They said they would cover it after we met our deductible for her for the year of $2,000 and then pay 80% until we met our out of pocket for the year of $3,500 for her. We hit all of that already this year but that will be how it is come January 1st. At $15 a day for food, $15 a day for pump rental and about $2 a day for the pump bag, it costs her $32 a day just to eat. It will take her 62 days to meet the deductible for the year for her if all she does is "eat" in the first two months of the new year and does not see a single medical professional. haha! I bet we hit our our of pocket max by the end of February like we did this year. Lets just hope next year our out of pocket max kicks in on time next year and I'm not still fighting it in September...
I talked to med supply also and they do stock Elecare so we can get it through them. I try hard to keep away from the insurance company's "recommended" company because all I hear about from the feeding tube community is that they are no good and just keep getting worse. So while at times I get annoyed with our supplier they are better then many others!



Well it is Saturday and in my house growing up that meant cleaning day. The boys just got home from Home Depot and we are going to start on cleaning/house projects... if anyone has a magic wand that would like to complete all of it for us I would take it... :)

Jillian 8 month Video

Children's Hospital Walk/Run 2013

Our little princess turned 9 months old today! We did one of the best things today for this milestone, and something that really celebrated her life! Today we walked and ran as Team Jilli for the Children's Hospital Walk/Run!
It was so much fun and was basically a party! We got to see princesses, the Star Wars characters, and lots of athletes and cheer leaders! It was an event that just energized you!
As a team we raised around $1,500! Our goal was $1,000! This money goes to help Children's do all of their amazing things and their extras that make the hospital feel more like home.
Thank you for all of you support! We are so grateful for all of the donations! We are excited for next year!

I big, I crawl now!

Wednesday night Jillian moved into the world of crawling. She had been able to reach for things and slowly move for a while but now she can crawl up on all fours and make good time. At first she crawled to daddy and her monkey. Them she turned around and crawled to the PS3 and turned in on. Today we got a shield so she can't do that anymore... We also got some other baby proofing things that we figured out we needed... Like covers to sprip plugs since we have multiple in rather open areas in the house. 

She moving around the living room and getting at all she can. We have been putting her little backpack on her so she can crawl without a leash. She looks so big with a backpack on and is so proud of herself. We were out today and someone asked if she was on he way to school next. We said her feeding pump was in it. They acted all apologetic but we explained that it was fine to ask about and we were happy to share info. We even shared some of Julian's story. 

Tonight she also decided to start choking... On what you might ask... Had to have been something that came up. She had been sitting on Brent's lap and had not put anything in her mouth at that time. She had been screaming 15min before and that causes saliva and such to drain into her tummy then causing her to reflux it then causing her to choke. We try to sometimes let her cry out her problems but it is hard when stuff like this happens. She did that choke breath in and then held her breath for several seconds as we called her name and put her pointing downwards to no responce from her. She was motionless. After a while she sputtered a few times and took a good breath in. Sometimes when I worry if jilli is "that bad" that we need to be doing all of this and then she goes and chokes on nothing but herself and I'm convinced all over again. Times like that are scary but luckily they have always been short lived. 

Yesterday I left a message for GI seeing if they got the gastric emptying study back and if they had gotten the note from the head of IR about the button situation. They called back while I was at work and left a message saying that her gastric emptying study came back as increased gastric emptying not delayed. WHAT?!?!? I had a hard time not using choice words at my phone. How in the?what in the? What does that mean? I spent a while last night researching. There is not a lot of info about it for Jillian's age because it most commonly occurs in people who have had gastric bypass that has gone badly. This kid keeps throwing us for loops! As I told someone last night, with all the crazy test results she keeps getting I almost feel like why run tests. I'm trying not to be frustrated by this.

 Today we went and visited my favorite doctor. (If you have allergies or weird stuff like me go see this guy!) he said I overall look good. I have a sinus infection (which I could have bet money on). I guess your nose is not to leak green for over 3 weeks and have sinus pressure so bad your teeth hurt, and eyes that itch so bad you feel like you need to put on mitts on your hands. He just shook his head at me. Brent went and picked up my antibiotic tonight. I really dislike those things. Once you get Cdiff once you do your best to not get it again.  

Here is her trying to smile but refluxing 15min after eating. She was trying so hard to be happy, her tummy just was working with her. She could hardly stay still from trying so hard to keep it down. 

On your marks, get set.... crawl!

That's right folks, the title says crawl! We officially have a crawler! She was all over the livingroom tonight. She is not speedy yet, but it will come. She crawled across the rug to get her monkey and then back across the rug and turned on the PS3. Oh my little handful!
It is still funny to watch her get into the crawling position. She is still struggling with that, but it will come. For right now she puts her butt up in the air and moves her feet around until they land in the correct spot. Once she is in position she knows what to do. We have been slowly baby proofing but now the real fun begins, seeing what she ca get that we did not see. I'm sure there will be plenty!

In other news, I have not heard anything from Children's yet about test results. I am going to have to call there tomorrow. They sent me a nice bill today even though my insurance company paid them most of the bill two weeks ago, but it takes a month for them to put that in the computer so they billed me again anyhow... we will be discussing this more. I have a list of people I need to call on Friday on the fridge. I'm not sure how in the world I am going to get everything done on Friday. Maybe a few extra hours. Jilli's appointments and dealing with bills and other extras of Jilli are a full time job that I am trying to fit into one day a week. That is starting to feel overwhelming, and it is only the second week of school, but in that same note, it is only the second week of school and maybe things will calm down.

Tonight I was thinking (I'm the only one awake in the house right now, crazy!), that I really need to remember to go to HIM more. I get upset and frustrated but I forget to talk to the one who provides comfort. How come sometimes we do the exact opposite of what we need to do, even when we are not trying to be obsidian?

Don't Mess With a Mama Bear...

watching Pooh in Gastric Emptying Study

Friday morning we did Jillian's gastric emptying study. I was a little nervous about her needing to lay still for 90min. Brent had a comp day from work (he put in over 120hr during the last pay period) so he was able to go with. She laid still so nicely. She fussed when they first put milk in her tummy though the g port but after a few minutes she stopped fussing when they wrapped her up tight and put on Pooh Sing-Along-Songs (maybe Jillian needs that for her birthday...). She just watched it and played with toys. She fell asleep and slept for about the last third of the test. We woke her up when the test was over. They told us that her doctor would have the results within 24hr and that it might take a week for them to call us about the results. We then left the hospital and headed over to Mayfair Mall to have them look at my iPhone.
Once we got to the car in the parking structure (9 spot) we decided we would hook her back up. The pump kept erroring but eventually we got it to go for a little bit. Once we got to the mall they told us it would be an hour wait for them to look at my phone. During that time I lost track of the NO FLOW OUT errors that occurred. After lunch we went out to the car to try to flush the line to see if that was the problem. No movement at all... grand! We went back into the mall quick and they replaced my phone because the broken part could not be fixed.
We then headed back by the hospital. On the way I called IR and was able to talk to the radiologist that we have worked with before and have a good relationship with. He said to stop in and they would see if they could unclog it.

Sleeping during gastric emptying study

We got in and a nurse (she helped with the morning test) took us into a prep room and tried with no luck to unclog the tube. She then left the room and came back in with our favorite guy and the head of IR (he did not introduce himself). They tried and said that it was clogged and would need to be replaced. We asked that since were there if we could just change it to the button instead of coming back next week. At first the answer was no. Then a nurse came in and said maybe. Then she came back in and said that Jillian did not weigh enough to have a button... WAIT... WHAT?!?! She said she needed to be 10kg and she was not. I asked for her to be weighed and she was around 9.1kg! They then took Jillian back to just change up the white tube in the middle of her tube. After they brought Jillian back to us our favorite radiologist came in. He explained that the 10kg was a new hospital policy that was going into place but it was not a hard fast rule. We talked about how GI and Surgery had referred her to get it changed and they both knew her weight and knew her story. He said that if they were both good with it then ok, he needed to do something quick and then he would be back. At this point we were under the assumption that she would be getting a button the following Friday like planned.

I got my tube!

Then the head of IR walked in... Change tone of everything. He then told us that he had been at the hospital as the head of IR for 7mo and based on his experience they are implementing a new policy that to have a button you have to be 10kg. I asked why. He said there is less problems. I asked for more details. This is where it got interesting. He said moms don't blog about bad things, people dont talk about when children die from tube placements going bad and that Kimberly-Clark has a lot of money to invest in people liking their product and that they buy out people's opinions! He said that he did not know why I wanted a button and that it is like a nice shiny sports car but you cant keep it's engine running because it has to be changed every 3 months (something we knew... something that is true of feeding tubes). That if he had a child that needed a tube they would only have a PEG tube. That he could not see how something that is sticking far out of her would be interfering with her daily life (it most definitely does...). He insinuated that buttons are dangerous and could cause death. He kept saying that they could flip up into the stomach (something that could happen with any lengthy tube be it PEG or button). He said that even though GI and surgery are involved with tubes IR is the one that has to deal with them. He insinuated that we wanted to switch to a button for us and it is not in the best interest of Jillian. He acted like we were trying to hurt Jillian. I was so offended and ticked off. He said that he prefers a child be 16mo old before getting a button but he would compromise with us at 12mo.
I asked him why no one had told us before about this 10kg rule and he said that no one knew about it but the rule was being put in  place by a joint decision between the three groups... huh? No one knows about this but we decided it together.
 He did ask our favorite radiologist what he thought and he said that he agreed (he maybe said 20 words to express his agreement). I wonder what he would have said had his boss not been there. This guy was just going to go ahead with doing it so I find it hard to believe that is entire opinion changed.
If the head of IR had not insulted us, groups of people we belong to and been difficult maybe we would have just left saying fine, if its a policy then its a policy, but instead we are mad. But this is also the second policy change that Jillian is stuck in the middle of that could change the outcome of Jillian's care. I am annoyed with policy changes that change things without anyone knowing about the new policy before the procedure and then it changing things. There is obviously a problem with communication. 
Since we got home that day I have been researching problems with GJ buttons... and after reading every article on the first 3 pages of a google search on the topic I have yet to find a difference in problems with the PEG and button. I talked with people from Feeding Tube Awareness and they said that they don't know of several of the things that he mentioned or that they are opposite. I have found a study of GJ tubes that did not differentiate between the two types of tube and said their is a 0.4% chance of death with a GJ tube placement. That are low odds and considering that these tubes are placed in medically fragile people 0.4% death rate is better then I would have thought.

Daddy looking at her 4th tooth coming in while we waited

So now what to do about it. We are looking into that. We think a button would make Jillian's life easier (and yes in turn ours) but if you think we do any of this for our convenience you are sadly mistaken. We are the ones that get up at 2am EVERY night. We give up sleep, money, time, relationships, and energy for the best for Jilli. You try buckling her into a carseat with a PEG, you try helping her become mobile with a PEG, you try finding close that work best with a PEG. We do this all out of the love of our daughter. So next time you want to mess with this mama bear, dont forget I have claws.

A little catch up

When one parent is a teacher and it is the first week of school. 

And the other parent is involved in a multi million dollar project at work that is going live and put 100hrs in at work in 7 days. 

You get a baby who has just gone along for the ride! 

Brent work Saturday and most of Sunday of Labor Day weekend so jilli and I went to my parents. 

Saturday mom, Jillian and I went to some rummage sales, harbor market, babies r us and the mall. We found Daniel tiger toys! 

Sunday we went to church and then got lunch quick with Brent before he went back to work. Then we ran to the outlet mall. By Sunday night I was sidelined by allergies again. My parents helped me to take care of Jillian as I was in so much pain from sinus pressure. 

Monday Brent joined us in Kenosha. We had a cook out with the Coonce and Nelson families. It was so nice to catch up with old friends. Jillian and Aidan talked feeding tubes for a bit :) We got home late and crashed. 

Tuesday was the first day of school. Jillian has been doing a good job at pooping this week! She even pooped three times yesterday! 

Last night we joined Brent in McHenery for some Penera. She made friends with a family that had three little boys. She loved "talking" to them! After that we stopped at Brent's aunt Linda's house. They are moving and had some things for us. 

Maybe life will be a little slower this next week... Maybe