It has been an interesting few days. The highlight was definitely Ayla and Jacob returning from camp Ramah. They were gone a month and Eden was so happy to see them (well, we all were - I cried like a baby). Ayla and Jacob knew the surgery was this summer, but we decided not to tell them it was happening while they were at camp so they would not worry. They were eager to see Eden once we told them. They told us they would have liked to stay at Ramah all summer, but talked with each other about staying and decided not to ask us, and knew Eden needed them. Amazing kids...and they are right.
Eden is happiest around people. She has had two friends come visit (thank you Jessica and Molly) and these kids are great - they just play with her. They don't care she has a robot on her leg. They are short visits because Eden does get tired, but she enjoys them. The few moments of normal are good. My sisters and niece also cam e for a visit which was fun - Eden did not even care when we left to go pick up Ayla and Jacob. It was great of them to come check in on us. My parents of course are a constant source of support and help. Eden lights up around them. My 20 year old niece seemed a bit jealous my dad cuddles with Eden, she does not recall him being cuddly when she was little.
Some wonderful people have also sent dinner and some goodies - it is all is very much appreciated.
Now for some meaty stuff...
We had an orientation at PT today. We decided to drive back and forth to give A and J time at home after being gone for a month. So we will drive it a few days and on Wed we all go up to stay at the Ronald McDonald house. We will be there for three weeks pretty much except on weekends.
PT was INTENSE. Lots of kids with fixators - Chris calls the hospital a factory. They were happy with Eden's preliminary range of motion. They asked how many cent, we were going for and we said 7 - two therapists said wow. A bit daunting. They said it is aggressive but Dr Standard knows what he is doing. They also said the first 2 or 3 cent, will be easy, it is the last few that the motion gets compromised and stretching is at once more difficult and more important. There were older kids in the room with fixators on both thighs and shin bones. They were moaning and crying in pain. It was hard to be in the room. Eden did not notice much, she managed to stay focused on Dora the Explorer, but she was really doped up. Super potent tylenol and valium, breakfast of champions. The PT got her to stand with the walker and take a few tiny steps. We were standing across the room encouraging her to come to us. Def reminiscent of a baby's first steps. But remember, we have 4 kids, we never encouraged her to walk, it was easier when she did not. But our kids were all early walkers any way. We hope this trend will continue through this process and give her strength. She cried while doing it, but she did it. We will hope for a bit more each day.
They showed us where pool therapy will be and the process. For all of you saying how strong I am, this is where I lost it. This is all so complex. and I am not into gore, I am the one that can not watch a medical show and now they are talking about pin site care and infectious diseases and sanitizing and OMFG! I am sure eventually I will get the hang of it, but this is not going to be easy. We had no idea what was coming. Eden goes into the pool tomorrow and seems excited, little does she know it aint like it used to be. No Dad throwing her around...we will see how long she thinks it is fun. Lets hope for the best. The therapist said pool may not be so critical for Eden since she is so young, but they will try and see what happens.
We also explained our plan is to start PT there but then continue at home and maybe just come to them once a week to verify all is going according to their plan. They seem optimistic three weeks may be enough time with them. Of course, she said Eden was one of the easiest 3 year olds she ever worked with, that is our Eden.
We drove by the Ronald McDonald house to check it out and make sure there will be room for all of is and it does seem it will be ok. So we left home around 6:30 and were home by 2. Not too bad. Eden was doped the entire time. It made it easy I guess, but weird. We will see what happens tomorrow when we dose her. BTW - the meds are requested by the DR and PT so she is not in pain or too stressed during therapy. I do not support drugging 3 year olds as a normal practice. We are cutting down the pain meds during the day to every 6 hours instead of 4. She seems to be handling it well.
Tonight Ayla, Chris and I cleaned the pin sites. Well, mostly Chris and Ayla, I find it pretty gross. I will have to get used to it, but it is going to take some time. Or, I may keep Ayla by me at all times. She is remarkable. She better be a Dr, it would be a waste if she was not. She had a gentle touch and such a calming manner with Eden, Eden even asked Chris to stop and let Ayla do it! Jacob will do anything for Eden, he is at her service, but this stuff is not for him either. It pains him to see her like this, he has had to leave the room a few times to collect himself. But he is so attentive to her needs, she is lucky. And Adina, she is loving Eden and paying with her a ton.
A few other small milestones, Eden sat at the dinner table for a short time with us, a first. She was on Chris's lap, but she was with us. I hope each day we can get a bit more normal.
Chris has turned the crank for two days and it doe snot seem to hurt her at all, that actually seems to be the easy part. If it all works as they say, she has added 2 mm in length in two days.
I guess that sums up where we are, another early day tomorrow to get to PT by 9 am. Thank g-d Chris does not mind driving....g'night
No comments:
Post a Comment