We have seen at least one doctor every month since Jillian was born. Jillian has had over 160 doctors appointments, 8 hospitalizations and 7 trips into the OR. Lydia has had 2 trips into the OR, over 30 doctor appointments, and 3 hospitalizations. All of this adds up to lots of time with doctors!
We have had some rough doctors over the years... some that have frustrated me, two that raise my blood pressure just from them walking in the room, and some that I have had to work hard at figuring out how to best communicate with them...
However the majority of our experience with doctors has been great. We have a great team! From our first GI doctor who loved Jillian enough to admit when Jilli surpassed her expertise and she loved Jilli enough to admit that and pass us on to our current GI dr who cares about my girls so much. To the point if a blocked number comes up on my phone at certain times I know it is her calling to check in. Our pulmonologist worked hard for Lydia once we realized there was a medical need going on. Neuromuscular cares deeply about our entire family and it pains genetics that they don't have any answers for us yet. We have had countless floor, ER and specialty doctors go above and beyond for our girls. We are so grateful for our many doctors and the amazing things they do to help out girls!
Jilli got her trial wheelchair on Monday. She is working hard at getting the hang of it. We have to give it back on Monday and that was making her really sad and breaking my heart that we were working so hard all week to teach her how to use it and give her some independence and then we were going to take it away. Thankfully last night Brent was able to stop at a local lending closet and rent out a wheelchair until her chair is ready. She is so excited. It has been a week of adjustment. The weather has not been great so we have gone to Target a lot to try out the chair with the smart drive. It is going to take a bit for her to get use to the smart drive (she is doing great with the chair in manual mode) but she is working hard. Something new is hard though and she has been showing her processing in sassy words. I know it is just her working though something new in her world but it is still hard. She is still "typically" developing intellectually so with her it is a mix of helping her with the typical and her unique needs.
Last weekend we had a great time with our friends the Smith family. Jilli loves her friend Nate and we love spending time with Holly and Kirk. We had a really good weekend. We went to the observatory, out for ice cream and went to church. It was fund spending time with friends. We also had Jaime, Jason and Emerson over for dinner on Tuesday night. We had not seen them in a couple of weeks so it was nice to catch up.
We are watching Lydia's pulse ox in PT. It is seeming to confirms the thought that she will likely need oxygen once she starts to walk. We understand that are accepting that. If we do end up going that route that will be a new juggle. The girls keep us on our toes.
On Friday we got the letter saying Lydia now has Katie Beckett. We are so excited! This will really help! I will be honest, it was a little bit of a bonus that it came while Paul Ryan was speaking about the bill that fell apart. There is still work to be done in healthcare, I just strongly feel like the Ryan plan was bad. I encourage people to go watch the Healthcare Triage videos on youtube. They have been really informative to me.
I have also spent a lot of time lately doing care coordination for the girls. Lydia had a med that we were getting 60ml a month instead of the 81ml we needed, Jilli got an oxygen concentrator and there has been a lot of phone calls with that, I called all of the places that we have medical bills with to let them know of Lydia's Katie Beckett, I have been writing daily to our PT about the wheelchair trial, I've been in contact with the wheelchair place working on it all... I've been meaning to blog all week but it just has been busy! Brent started his new job on Monday and he really likes it. I am typical me and am just waiting for insurance numbers so I can work on all of that.
Lydia's tummy drainage still has a strange smell even after the med finished. Now we are adding probiotics to see if that helps, if not we are going to try a different med. The med did help with the pooping... she went from pooping twice a week to pooping multiple times a day. It is back to newborn poop and smells really really strong but at least it is coming out. Hopefully some probiotics helps balance some things out!
Well time to get back to the rainy day. We ran to Walgreens earlier but other then that we are trying to have a curl up on the couch kind of day. We watched a couple of episode of Julie's Greenroom on Netflix (highly suggest the show!) and at the moment both kids are playing with toys but we all know that will only last so long lol! A downish day is kind of what we all needed here today!
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