Brown and Pink Polka Dots : Plastic Wrap?

Well things may get interesting here with the line that started from the lab tech "you need to wrap her diaper in plastic wrap..."

We just keep chugging along here! Sunday morning Jilli woke up in a good mood. We went to church and for the first time in weeks she stood for two of the songs (we do three). Jilli loves singing in church so it was great to see her be able to participate for 2/3 of the singing.
In the afternoon we had an outdoor graduation party to go too. Jilli did well at first but then I could tell by the look in her eyes that she was starting to have issues (a dog did come up to her and there are a lot of flowers and plants where we were). Everyone else started to comment how she looked tired and needed a nap but I knew the look was that she was not feeling well. Brent put her in the car and she told him she felt sick. We asked her what was wrong and she said she had coughs stuck in her and her lungs hurt. I took her over to my parents where we keep a pulse ox and neb. She told me she needed to lay on the couch and rest because she was sick. This is not normal for her, however she is getting better about communicating when she is not feeling well. Her pulse ox was 92 (if she stays at or below 91 while resting with respiratory symptoms we go Children's) I started a neb. She rested for a while and her pulse ox started to come back up. My dad gave her a bath because she was insisting that she needed one. She had fun in the bath but then after was really lethargic and her pulse ox dropped to 91. She rested for a while (over a half hour) and then started to perk back up. We left my parents around 7:40 and Jilli did not even make it half way home before she was asleep. She slept until 6am this morning! She was out!

I started my day by sending a message to her ped letting her know how the weekend went and about the black in her stool and her trouble breathing yesterday. The nurse called me back this afternoon and said that they want pulmonology to get us in ASAP. By the time I got off the phone though the pulmonology nurse line was done for the day so I will call first thing tomorrow to see when they can get us in. We don't have a follow up scheduled with them until fall but her ped wants Jilli seen sooner then that.

Jilli had PT today. We talked about how she has made some gains (her stair climbing is getting a lot better) but how her endurance has gotten shorter. There were several times today were she got silly doing stuff as a way to say that it was too hard. By the 45min mark she was done and spent the rest of the time laying in a wrap swing. Her pulse ox also took a couple low dips too. We did calmer activities today.

Jilli and I then went to the daycare to count coins from the coin war. While we were there I got a call from Jilli's GI doctor (I left a message for the nurse this morning) The doctor said that the nurse was not there today but when the dr noticed I called she knew that something was up if I was calling on a Monday morning after talking to them on a Friday. I explained what was going on. She is confused like the rest of us. She decided we should do a stool sample and blood work to start with and then go from there. Getting blood drawn on Jillian goes a lot smoother at Children's then at our local places so Jilli and I headed to Milwaukee.

Jilli slept in the car the whole way to Milwaukee. Once we got there they called her back and the first person look a look at her vanes and could not find any so he called for a second person. She was able to get it in one poke with a little digging. Jillian did such a good job. We talked about how the band was giving her arm a hug. She said at one point that it hurt but she was pretty calm and just held my hand. She liked watching the blood come out (she has really been into blood, bones and muscles lately). When they were done she got to pick out a band-aid and was all excited to get Big Bird (we watched several Sesame Street clips last week about going to the dentist). They then brought in the info for the stool collection. Test 1: Get poop from three different bowl movements and put it on a card and leave them at room temp Test 2: Get poop and put it in small container and leave at room temp for up to 24hr and refrigerate for up to 4 days Test 3: Put poop in special container filled with red liquid and fill it to a certain point and then put in the fridge for up to 36hr. Oh and the poop can't touch her diaper... this is where plastic wrap comes in... we have to plastic wrap her diapers so she poops on that and not the diaper as the diaper can interfere with the test. This morning (before GI called) Jilli had one poop that was very thick with some black specks and a second one that was watery and running down her legs with black specks in it (she did not poop at all yesterday and is still on the 7ml of laxatives twice a day). We will see what tomorrow brings for poop! We have multiple things that we have to do tomorrow (OB appointment, pick up meds, ect) so it could be a really interesting day to day the least!

Today she did play a little bit. Not as much as Saturday but better then it had been. She loves to pretend to drive and loads up her baby doll in its car seat and packs all of her little bags with stuff and puts them in her "car" (she just sits on the floor) and then she invites Brent and I to join her on her trips. I love watching her imagination. She also did some school work this morning. She is working hard on learning her letters and shapes! I love her love for learning.

I did not hear anything back from genetics today about if they figured out the insurance stuff. GI did tell me that they talked to genetics as well and they said they would see what they can do (GI said she told them that we have been waiting a really long time and we really need to figure out what is going on) but that there is a lot of demand for this clinic but they just lost another doctor... If you have a genetics degree I bet you could get a job really easily at Children's right now!

Right now she is watching Silly Songs with Larry. You can tell the day has taken a lot out of her and I think we are going to head upstairs and cuddle. We both need all the rest we can get before diapers+plastic wrap+poop starts tomorrow!