Sunday we went to church (after digging out of the snow) and then headed to check into rmh. We then met Brent's parents down town for Disney on Ice. We had never been to Disney on Ice before and the girls LOVED it. Lydia was grasping onto the bar in front of her in excitement and Jilli was so excited. After the show we went to dinner and then back to rmh for dance therapy. Lydia got time hanging out with Laura (one of the managers at rmh) which made her very happy.
Monday we dropped off all of the band-aids from the band-aid drive. We collected over 5,000 band aids. Thank you so much to everyone who contributed! After dropping off band-aids we stopped to get coffee at the hospital and then Jilli noticed her med port had opened and there was formula and bile everywhere. We joke that we don;t have to deal with food messes often because its not like our kids eat and make a mess everywhere but this was def a food mess! We had to run back to rmh quick to get her all cleaned up and moved Jilli from the stroller to her wheelchair and Lydia to the ergo since the stroller was now dripping wet. Then we had to run back to get to the appointment on time. I felt like I was a sweaty mess by the time we checked in.
Jilli has urology for the first time and the referral of rehab because she is 5 and not potty trained. I felt like I was walking in blind to this appointment. I am a list person, to the point many of our doctors walk in the room and ask what my list is... but with this appointment I didn't have a list nor did I have any idea what to expect. I was very nervous. We saw the nurse practitioner... she was amazing! She had read Jilli's chart before walking in the room which is HUGE to me. Yes I know all the info in her chart but it means a lot to me when someone looks at the chart before coming into the room. We talked about the fact that we tried potty training with Jilli but it ripped at her self estimate because she doesn't feel when she pees or poops. She is also getting fluid into her body 24hr a day which makes her have to pee more. We talked about how we use hybrid diapers (the huggies easy ups) and as long as its pee Jilli changes her own diapers, we just have to remind her to do it, because she doesn't feel the pee coming out she will be in a puddle before she notices a problem. The NP said we are doing everything right. She complimented Jilli and I repeatedly on how we are doing a great job at everything and how we have taken the right steps to things. She said to not push potty training because expecting her to succeed at that is just mean. If she feels like sitting on the potty sometimes then fine, but that her using the potty is not an expectation (I just want to tell the person from the diaper supply company to shove it after they gave me crap about not putting Jilli on the potty every hour). She said that if Jilli gets a few years older and decides that she no longer wants to wear diapers that we can talk about doing a surgery to make it so she would be able to cath herself through her stomach. This would give Jilli the independence of being able to take care of her urine needs by herself. I had never thought of that as an option. It is not something we are looking into now, but I appreciate that this NP had options for us down the line if wearing diapers becomes an issue for Jilli. Right now if anyone says anything to Jilli about wearing diapers still I kinda go mamma bear on them but I know some day she might want other options. They also said that if Jilli stats having more UTIs (she had several when she was younger but not in the past year or two) that would be another reason to look at the surgery.
I also liked that the NP didn't make me fill out all the paperwork. She said she was sorry they even had given it to me. I have gotten to the point though on that paperwork that I just start writing "see epic" on parts of it lol
They also wanted to get an ultrasound of her bladder and kidneys so they got that scheduled and we were able to do that while we were up there. Jilli ROCKED the ultra sound. She laid still and held her shirt up. She asked questions about what was on the screen. She did amazing! She had been asking for a balloon from the gift shop (non latex) so after her ultrasound she got to go to the gift shop and pick out a balloon.
I also had a meeting for the CHW run/walk. It was a focus group for team captains. There was 8 people there are we worked on different ways to improve the run/walk. I am really excited for the different things discussed and am excited for the event this year. Being a team captain is a lot of work organizing people and doing all of the fundraising, but it is totally worth it! The run/walk pays for a lot of the things insurance doesn't pay for, but those are some of the biggest things to my kids... art, music and dance therapy in the hospital are paid for with funds raised during the run/walk. Stuff for the run/walk doesn't kick off for a little bit still but I am excited and hopeful this will be our biggest year yet!
While at rmh we also got to do a lot of fun activities. The girls got to see a play put on by the zoo, have music therapy and participate in "kids can cook" where a local chef came to the house. Plus they got to spend time with some of their favorite people in the world, the staff at rmh. We also got to spend time with other guest families which we really enjoy, rmh families have become our extended family. Jilli sobbed when we left. She kept asking me not to take her away from her favorite place in the world!
I'm exhausted (but wide awake, thank you for the venti coffee Alex!) but thankful for the past few days of great memories and productive appointments.
On Saturday we were on CBS news about the hospital flu policy. We were contacted Saturday morning by a reporter who had seen us on TMJ4 but at first said that she was looking for someone closer to the station but then a little while laster she called us and said she was on her way to the house. After a quick cleaning of the house and getting everyone dressed she came and interviewed us. She was really kind and seemed truly interested in the girls and asked some great questions. We were not planning on being interviewed by two different news stations last week but I am hopeful that the community was able to hear that while complex families support the policy because it is to keep kids like mine safe but that families like ours who are currently in the hospital are going to need extra support right now and thus need help from the community. If you know someone who has a kid at Children's right now that also has other children, ask them how you can help, pick up extra shifts at work for them or help with watching the kids. To see the news story click HERE
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