Its been a doctor week around here!
Monday Jilli had PT for the first time since falling at the museum. Her therapist said she definitely sprained her ankle and it was still swollen. You can tell it still bothers her at times but she has not complained much about it and just casually mentions that it hurts and has asked a couple of times to be carried. She still limps on and off but for the most part it is doing a lot better. She just rolls with life.
Monday Lydia also graced me with a ton of green vomit. I had just changed her diaper and had just about finished getting her dressed when she started spewing... it just kept coming and coming but she did not seem too bothered by it. She seamed totally fine after so I think it was just her laying flat and moving around that sent stuff flying in the wrong direction.
Monday night mom came to spend the night. Jilli didn't fall alseep until after 11. Falling asleep has been really rough again for her. The other night it took her laying in her bed for 3 hours before her body finally went to sleep. Tuesday morning she was up at 6am! Tuesday morning we ran to Babies R Us to got Lydia a Tortle. Jillian's PT suggested it for Lydia since she is going to be having stomach surgery before she can sit up so she is going to be limited on tummy time so we want to help prevent a flat head. We also needed to get more Alimentum. After Babies R Us we headed to Children's.
We checked in for Jillian's EMG. They were running a little behind but Jilli didn't mind extra iPad time. The doctor came in and we talked a little bit. I was not there for Jillian's first appointment with this doctor because Lydia was in the ER so he and I were able to talk a little.
This article explains the test she had done. Anything that involves needles and electricity is not fun. Jilli did not love having the test done but she sat next to me on the bed and held my hand (I had my arms wrapped around her body). There were a few times where she tried to pull her arm or leg away from the doctor but when we told her we needed it she gave it back. She cried for most of it but sat still. We watched the iPad for a little bit and we sang songs together. You could tell it hurt but she powered through. I am so proud of her for how strong she is but I hate that she has to be this strong. Most kids would have run away or tried to hurt the doctor but she sat there... this is her normal. Scary, nasty tests are her normal. This test sucks enough the doctor felt bad for having to preform it. I wish they were not so normal in her world, but she does not know any different so she sits there through it all. She was a rockstar. By the time the test was over she and I were drenched in sweat but at the end of it she just curled up in my arms. I was worried during it that she was going to be pissed off by the time we were done but instead she retreated to my arms. I love that I am her safe place. As we were walking out of the room she said she was not scared anymore and went right back to playing with her iPad like nothing had ever happened.
We then headed over to the mall. I had a Build A Bear coupon and I had seen online that they had Peppa Pig. Jilli is a fan of Peppa Pig. We got into the store and the woman was talking about how you could get two animals for $35... Peppa was $32 so it was kinda a no brainer to get a second animal for Lydia for when I make her Tubie Friend at somepoint. The problem then was that Jilli wanted to make Peppa and a Star Wars animal and of course the Star Wars stuff was not included and at that point in the day Jilli had it and started to melt down. Quick mom thinking and we came up with a compromise... she could make Peppa and get her an R2D2 shirt. She then picked out a princess bear for her sister and she went over and got them stuffed. Once she finished she realized that they had Peppa Pig clothes and she started to get upset (very overtired child at this point) but we made a deal that we would come up with a way for Jilli to work at earning clothes for Peppa and that once she earned clothes we would come back and get them... thankfully that worked. We then stopped at Barns and Noble were they had LeapReader books 75% off! Score! At this point the interstate was barely moving so we decided it was just smarter to get dinner by the mall instead of trying to head home. Brent got done with work and headed over and we met at Cheesecake Factory for dinner. I had not eaten much all day (I don't eat much on long hospital days... I just can't) so by this point I was getting hungry. After dinner we headed home where Lydia was not thrilled about much of anything but eventually calmed down. I think the day wore more on me then Jillian. She just tells you the test was not fun.
Tuesday I also got the "joy" of making our supply orders of the girls for their med supplies for the month... sometimes I think banging my head against the wall might get me farther... I don't understand why things are this complicated... "Oh, you need feeding tube bags and pulse ox probes, eventhough they come from the same warehouse you need to talk to two different people about that." This is one of those things Brent and I have become slap happy describing cause otherwise we would scream. We will see tomorrow if I get everything I ordered.
I also talked to the GI nurse on Tuesday. I needed Lydia's reflux med switched over so her GI dr was the one managing it. I needed to let them know about the green vomit on Monday too. I also asked for a referral for the Ronald McDonald House for the girls' surgeries in September. Jillian's surgery is scheduled for 7:30am which means we will need to be there long before that. Also after their surgeries Lydia will be in the hospital for at least 24 hours, where Jilli will be released sometime the day of surgery. Jillian is not allowed to sleep in Lydia's hospital room and after a surgery I would like her close so our hope is that we all can stay at Ronald McDonald House the night before the surgery and that Brent and Jillian can stay there the night after. Hopefully this works out as it would make it a lot easier for us. We have never stayed at Ronald McDonald House before since Brent and I both always just stayed in the room with Jillian but having two kids with medical needs makes things a little more tricky.
Today we woke up and mom, Jilli, Lydia and I met our friend Annette for breakfast in Lake Geneva at the diner. Then we hit up Target to pick up Lydia's med. We decided that we should do something fun so we headed to the new inclusive playground in New Berlin. It was a great place for Jilli to play and I loved getting to watch her play with other kids. She doesn't let it stop her that she is stuck with her mom being right by her carrying oxygen, she joins right in. It was rather warm out today and Jillian's endurance is not all that great so we were at the park a little less then a half hour, and Jilli spent at least half of that time doing sitting activities, but she was doing it with other kids and getting to play and have fun which is all that matters. As we were leaving Lydia decided to poop and Jilli peed all over her pants so new diapers for all was needed. We then headed over and got lunch and killed some time at Target in New Berlin before heading up to Children's.
The meeting with the doctor today went well. He is an honest guy who does not sugar coat which I like. He explained the girls this way; that there are many "stories" he could make of that the girls have this or that and he could give all sorts of fancy reasons why, but without the data, it is just stories, no truer then fiction. The thing is, that we have hit a science "wall." We have done the obvious test. We have done the sucky tests and they still can't prove what this is. He thinks it is most likely more then one genetic disorder and that it is on a cellular level... the problem is that the things he thinks might be the problem, there is not testing for currently or the testing they do have is so inaccurate it is a waste to even do them. He thinks it is provably a cell problem with how their cells either use and/or process and/or store oxygen or how they use and process some other chemical (fats, sugars, ect) but there is not a way to figure that out right now. So for now we wait. We see him again in 6 months. He said if he saw the girl's symptoms in an older adult (he works with adults and kids) he would run the tests he has run and then at this point he would say he would see us again in 10 years to see what changed... but he said with the girls we don't have 10 years to just wait around (knife to my heart). I like this doctor a lot. You can tell he wants to figure this out. We have FINALLY found an overarching doctor who is curious and determined to figure this out (our GI dr is however she specializes in GI, not overarching). I think we found our Dr. House! He is not willing to just say "oh well!" He is determined to help us with this in every way he can. While most appointment's about Jillian's overarching have left me feeling defeated, I left today's appointment with hope. He was honest that science just is not where we need it to be yet, but also willing to help us in every way possible and willing to think outside the box. So while today didn't get us any new information, I feel like we are in good hands. I am SO thankful for our team at Children's. It has taken us some time to assemble to right people in the right positions but I am so thankful for everything they do for my kids.
Tonight is just a chill night here. Jilli has been playing with her LeapReader and Brent is cuddling with Lydia (she has some gas tonight which she is not thrilled about but by the amount of poop that has come out of this child today I'm not sure what else could be hiding in here!)
Thank you for all of the prayers for the testing this week. I am so grateful for people's kind words!
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