We got up and went to Tangaroa Terrace for breakfast and then worked on packing our bags some. Jilli wanted to go to the pool one last time but Lydia did not so we took Jilli down to swim. She did much better this time as her oxygen stayed on the whole time.
We went back up to the room and packed up and checked out. We headed into Downtown Disney for a little bit to find lunch and then got into the rental car and headed to the airport. Airport security was pretty smooth.
Lydia spiked a fever on the flight home... this isn't uncommon with her while flying for some reason. We always blame it on a virus but it is weird that it is happening at least one direction of every trip... thankfully this trip it wasn't until the trip home. She did well overall on the plane ride but you could tell she didn't feel well. Jilli had stomach cramps the last hour of the flight but thankfully flying home from CA is an hour less then flying there so it wasn't as long of a flight, it was much smoother flying and there were very little clouds so we could look outside and see really cool things.
We landed and the limo picked us up and drove us home. We got home at midnight and then needed to hook the kids up and get them to bed. It was after 2am before we fell asleep.
We also came home to two very large packets from NIH. I knew I wouldn't sleep without at least looking at them... here we are almost a week later and I have only read about half of Jilli's packet because that first night I found so many errors I just put it down. There is no use in raising my blood pressure. There are just so many things that are wrong... like they stated we agreed to changes we vocally did not agree to, Jilli's skills and abilities are listed incorrectly in the rehab note (it says she has mastered skills she doesn't even have step one of down), and there are test results in there that they told us while we were there came out normally but now that I have the test results in my hand I can see otherwise... like one study it is saying that she either had an abnormal result or the machine malfunctioned... instead of doing the test over or admitting that they are not sure they are just going with a machine malfunction and just ignoring the abnormal number... that is not the scientific way to do things!!!! Another test they told us was normal but now I see that they were only able to accurately get a number for one part of the test and not the multiple other parts... you can not say it is a normal result then with very limited data... either do the test over or say it is inconclusive. We don't mess with data... especially from a place that accused our home hospital of not having data (we do we have tons of it). I was frustrated by that a lot... then there were notes of someone on the team doing daily physicals when they didn't. But when I had to put the stack down was when I read the recommendation for why they suggested counseling for Jilli... I have nothing against counseling and we have done family counseling before and are currently talking about what ways to best support the girls from a mental health standpoint because currently that is not an area we are very worried about but we want to support the girls holistically so that is an area that there have been conversations about... but what made me mad was their why... they said she needs counseling because she is able to vocalize what does and does not help her body feel better and she spoke up about that at one point when they were talking about changing something... what the crap! Isn't that the GOAL!?! She is a very bright 6yr old and we have always encouraged her to be a part of medical conversations and who is able to vocalize how her body feels. I know the team said multiple times that they never see kids that are at the cognitive place my kids are so maybe that is a piece of it... but come on! She does not need counseling because she can tell you what does and does not make her feel better... that is not a problem... that is something that many people really wish their kid could do. I just set the paperwork down at that point... I had not thought about any of the medical stuff for a week and I wanted to live in that head space a little longer...
Here is what I can tell you though... is that I can see how healing this trip was for me because before Disneyland I would have been a hot firey mess reading that paperwork and I would not have been able to set it down when I got upset. It would have sent me into a tailspin for days... I have thought about it very little this week. I talked about it with a couple of friends and talked to our PT about it but otherwise I have not thought about it much. I am in a much healthier place after this trip. Being an American we are not taught rest well... we miss the Biblical concept of Sabith and think that we know better then God... and I as a task oriented person am really good at thinking that rest is a waste of time... but man I can feel how much better I feel after setting down the baggage for the week and just enjoying my kids. I felt really guilty before we left about taking this trip... I always worry about using services from a non for profit because I know money is tight in the NFP world... and I worry about us using money that someone else needs more but man I am so thankful we went... I feel like I am a better human after. I also feel like I am in a much better place to go into all of our appointments in April and be able to not feel as defensive and that will help me to be able to better communicate with our team to work together to make the best choices for our kids.
We did get Jilli's neuropsych testing back... and it looks just like I would have thought... cognitively she is ahead... fine and gross motor she is very very behind in (like 3rd percentile)... once again I am not sure how our big team at NIH calls that normal... but the neuropysch reports was one of the things we feel like best displays our kids abilities and displays them accurately... and it even speaks kindly of us and our home team... I felt like they were one of the only teams there that seamed to understand that the girls might be able to do something once (like jump) but can not repeat it over and over like their peers can. This is a huge key in the kids.
We also met with our OT about the hand splints NIH made the girls... they are falling appart already and our home OT thinks they are way overkill for what the girls need. Yes they both over extend their thumb but there are less obstructive ways to help that. We are going to talk to our rehab team in April about it but as of right now we are not using them. Our speech path also looked at our audiology results (we got the actual ones) and said she is not worried as she was at first but that we def need to meet with ENT because the loss is in both ears that it might be effecting more. We see ENT in a couple of weeks.
This week we had a pretty calm week. Jaime and Jason and the boys came over on Tuesday which is always a big highlight to us. Wednesday the girls had PT/speech... we were all going to go to church that night since we missed on Sunday but Lydia was feeling yucky so just Brent and Jilli went. Lydia hasn't felt horrible this week and has times when she is fine and then has other times were she is uncomfortable. She had a pretty good bloody nose the other day and mainly is just cough at night... she lost her voice last night and sounds like a frog today but is playing like normal today and dancing with Elmo so I am not super worried and we haven't gone to a doctor because I don't think there is anything they can do... this is just what her body does.
We also have set up for nest Wednesday for the girls to head to the outpatient lab to work with the child life therapist to help the girls develop some new strategies to help with the blood draws in April... our blood draws at NIH were horrible and just the word lab makes Jilli very upset right now so we are going to try to help her so on Wednesday we are doing play therapy to help her feel more comfortable and then an actual lab draw the following Tuesday. I am so thankful for our home hospital and how they see the hardness of what happened at NIH and are wrapping us in love and helping us come up with plans to best help the girls. I can not express enough how grateful I am!
So thats our trip and how things have been since coming home. I am so grateful for this trip... for Make A Wish, Disneyland and Knotts for all the amazing experiences they have to our family. Jilli and I sat down yesterday and worked on thank you notes and am just waiting on picking up pictures at Walgreens to mail them out. Thank you to everyone who donates to Make A Wish... I can tell you how much it helped us all set down a lot of emotional baggage and heal our hearts. I feel like I can go forward as a better person because of this trip and I know that I can see Jilli handling things better too.
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