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... :)