A trip to the Pumpkin patch

We had a fun relaxing weekend. Friday night we spent hanging out at home making yummy food. I had been wanting steak and potatoes all week so we grilled out and watched TV. Saturday morning we cleaned around the house and Brent mowed the lawn. Then we headed into Kenosha and met my parents and Mikaley and went to the pumpkin farm. It was a lot of fun and Jillian LOVED it. We then went to Pets and played. The rest of the weekend was spent hanging out. It was calm and I loved it! Here are pictures!

Her seeing herself in her Minnie Mouse Costume for the first time

She was "playing" with the baby in the mirror

trying to put her head band on

She has learned how to shrug her shoulders lately. It is adorable

She was trying to put it back on my herself

Minnie Mouse with a feeding tube backpack on!

pointing at Big Bird

Cheese! Isn't she cute!

Looking at the animals. This is as close to animals as she gets (yes even at the zoo... animal allergies...)

Ever seen a cuter Minnie Mouse with a feeding tube... she it too cute!

My pumpkin

She is kinda goofy! We ended up running into another family at the pumpkin farm with a kid with a tube. It is sweet to run into other families of tubies. We have this weird secret club that none of us signed up for but would not trade our kids for the world. It is always kinda weird tho when you notice another tube kid in public because you never know how to start the conversation

One of her daddy's favorite movies

Grandma, Jilli and mommy

Jillian's favorite princess

Tink! She was not too interested in this one

BUBBLES! These are one of her favorite things because she knows how to say "bubbles" clear as day (she substitutes "bubbles" for most words that start with B)

Tube girl and her bubbles :|)

Frozen! She is in love with this movie like the rest of the world

Our little snow man

She wanted so badly to look in there

Jilli and "Bumpa" She brought tears to everyone's eyes this weekend when she called him "Bumpa" It was the first time we got anything more then a "g" sound when she tried to say grandma or grandpa, and it is very rare that she even tries and super rare that she says anyone's name so it was super sweet!

Daddy helping her up the stairs. It was a GREAT PT work out!

She is starting to love slides. Thank you therapy!

Just smash the feeding pump...

Playing in grandma's new Hylander. It seats 8 so everyone fits!

Skirts go on your head right?

Or how about like a lion?

My sweet girl!

Hanging out in her car seat

She was sad because I asked her to take her picture in her cute outfit

She LOVES her coat

Her she was crying because I asked her to take a picture without her coat on

This was as good of a picture I got of her in her new boots. She LOVES her new boots.

Sharing passy. Happy now that she has a coat on

Making a feeding tube backpack

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

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

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

Supplies:

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

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

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

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

Clip in modified tube feeding backpack

Inside her tube feeding backpack

Croup Update

Jillian taking a neb and watching Daniel Tiger

I took Jillian to the dr this afternoon for her followup for croup. First he looked at the report from the walk-in clinic. He said the radiologist's report from the chest x-ray was that the lungs looked the broniolitus or the start of pneumonia but that the neck x-ray looked clear. (the dr there said she noticed narrowing of the throat on the x-ray even though the radiologist did not). He listened to her lungs and said that they sounded good and that we could stop neb treatments. He looked in her ears and had to dig wax out (go figure) and that the one ear looked infected. We decided to just watch it to see if it gets worse. He looked in her mouth and said it does not look like she is currently popping any teeth. He said that if her ear seamed worse to call and that he was the one on call this weekend.
The appointment went relatively smooth. He and I don't always see eye to eye on things, but he is the only ped in the office that works on Fridays and since Jillian has a track record of needing to be seen on Fridays we end up seeing him every so often.
After the appointment we went to Target. I looked at Jillian's passy this morning and there was black gunk in-between the handle and the plastic part. It was quite gross and I'm not sure where it came from so I sanitized it and it was still there. The passy part also filled up with water while cleaning it so I think there was a hole in it somewhere so it found it's new home... the trash can! I then searched the house for the spare passy and I did not find it anywhere. Searched high and low. I'm not sure where it went... I had a substitute passy that neither of us really likes but it worked as a place holder. It was probably time for the next size passy anyhow.  

sporting her feeding pump backpack

Jillian's new pump has not learned that I'm boss yet. I'm not sure if we have not figured it out right yet or what. It has woken me up every night since we switched to it with some kind of error that is magically "fixed" by me just hitting run twice. It is not even at the same time of night. It also likes to say that a feeding is done after 3.5 hours when the pump is set for 52ml/hr and a volume of 208ml. That would mean 4 hours of food is in there. On top of it sometimes there is food left in the bag (sometimes as much as 50ml) and other times the bag is empty. We have not changed our measuring methods since switching to the new pump so we know it is the correct amount of food in the bag. I am giving it this weekend to figure it's self out or I'm calling med supply on Monday. I love how little the pump is. Jillian can wear the backpack and she looks so proud. It can be tipped to so when Jillian manages to get her hands on the pump bag it is not as big of a deal. But this accuracy thing is making me second guess it. We will see.
I am also trying to see if we can get Jillian to not poop an explosion every time she poops. If she gets less then 2ml of lactulose a day she does not poop, however with 2ml it is coming out like its a volcano and up her back and on her clothes. I am trying for the weekend doing 1.5ml twice a day to see if that evens things out. We will see. It is the Jilli balance!
Jillian is also working hard to figure out how to crawl. She can scoot on her butt reaching for toys. This does not get her anywhere quickly but she does move. Watch out world! It think it is only a matter of time before she figures out how to take off. I think I will be spending some time on Saturday baby proofing the house and when I am in Milwaukee next week for one of her appointments I think I will be stopping at the mega Babies R Us to pick up a few baby gates. The house will now look more like she owns the place :)

seams she likes her new passy enough to fall asleep on a monkey!

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

Been at this a few days now

For the two week trail I am trying to keep really good notes to be able to bring to the doctor with us. Here are the scans of the sheets up to today. You can click on the sheets to make them larger. The way the form I am using looks has changed a little since I have found different things that needed to be add/changed while using it.

For today she drank 7ml of the water. She also has been coughing every time she wakes up. I am not sure if she is choking on something when she is waking up or what is going on. Sometimes she coughs while she is sleeping too.
There is no way I could write down each time I hear her reflux but I am writing down the big ones. 
For this trail she has been her happy normal self most of the time but she tends to be upset after she eats and is more irritable. Brent and I both feel that she is more fussy and acts like she is in more pain right now then she has for over a month. We have had more times of random screaming then we were having.

She had her 6 month Dr. visit today with her ped. She gained 2oz since Friday which is great for the diet she is on. The dr said she is looking good and that her ears look good. She put in the birth to 3 referral that Children's wanted.  I'm not sure if she will qualify but we will see.
I told her dr about the trail GI is doing and how it is going. She asked if I had called GI about how it is. I told her no because they wanted to give it 2 weeks.  She expressed that she thought life would be easier if they placed Jillian's tube into her tummy because she is going to start pulling at it more as she gets older. Please pray that GI holds this same opinion and that if it is God's will that she will be able to have the surgery sooner rather then later.
She also got one shot today. We space her shots out because if she does more then one at a time she seams to get sick 10to 11 days later. I know, weird delayed reaction but this is Jillian. The nurse gave her the shot and she did not make a sound. She was playing with her passy and could have cared less that a needle went into her leg. The nurse was impressed :)
Last night before her bath she sat up unassisted for about 30sec. She would not do it for the doctor today but she is working hard at sitting up. She wants to know whats going on. Last week the three of us went to the mall after her dr appointment and for the first time we put her in the stroller without the carseat. She thought it was great to look at everyone!
She is in LOVE with her feet right now. She loves to hold onto them, however she is not a huge fan of them touching the floor while she is laying or for them to be in water. She works really hard sometimes to keep her feet from touching things. Sometimes she does some really funny sensory things...
She also is in love with her bear blanket. My mom and I got it for her a few weeks ago and she likes to just hold it. It is a mix of some of her favorite textures and she will keep it by her for hours. It is also a lot more manageable to carry around then the blankets she was trying to carry around.
On another possessive note, her new backpack said it shipped. Now is the waiting for it to arrive. I am so excited to try it. I got home yesterday to the UPS truck pulling out of our driveway. I got all excited just to find out it was a tech manual...

Some other ramblings about our life:

• My van is having an issue starting right now. If I try to put the key in and start it right away it just sputters and will not start. If I put the key in, turn it to the second key position, leave it there for several minutes and then try to start it will turn over after a few sputters. Any ideas are welcome.
• This weekend is a boys weekend at our house. Dan is moving in soon and we are getting things ready. The bathroom on the level of the house he will be moving into has some issues. When we bought the house it was not winterized properly so some pipes had problems when we turned the water on. That bathroom had the most problems and we have not dealt with the issues yet because we have just pretended like we only have one bathroom even though we have 3 but 2 do not work. Dan's  dad, Brent, Dan, and my dad are going to work on the bathroom this weekend. 
• My borther-in law was supper sweet this weekend and came out and mowed our huge lawn!