Surprises or Miracles

Posted by Rebecca

I can't count how many times I've told someone attending to Sylva that she 'doesn't play by the rules' or that 'she has her own game plan'. She IS full of surprises. Since birth she has had one consistency and that is her inconsistency: labs, x-rays and clinical exams don't seem to have a nice predictable correlation. This carries into nearly all areas of her life. Today, for her, doesn't usually give clear clues about tomorrow. Regardless of me being the one who tells others of this feature, I need to say how AMAZED and SURPRISED I am!!! As I have said earlier - pretty much everyone who has had a chance to assess her changes has expressed that she has very much surprised them. To some extent that is exactly what I would have expected. YET the things that have occurred and her progress is so beyond anything we could have ever imagined!!! It really doesn't and could never add up from our limited understanding. But beyond that we (and especially I) need everyone to know that whether or not it is ever understood or comprehended, we KNOW that Sylva and we have been the recipients of great help in response to fasting and many prayer's on her behalf. How can we ever express enough gratitude!

We have been enjoying hearing Sylva's voice. Her vocal chords are still sore and not yet back to normal after being intubated. She sounds quite gruff but also like people sound when they have been playing with helium - kind of a weird mix and I think she is getting a kick out of it when she does decide to talk. She has at times favored us with a few musical numbers now better suited to her new voice. She is also gaining more strength and stability daily. She cannot yet stand or walk and crawling is pretty difficult and tiring. She has been using a 'shopping cart' in physical therapy to help her balance and support her weight. Her teasing nature is coming back and she's making up for lost time as she has now come up with different jokes or pranks for just about everyone.

The last few days have been a bit intense for different reasons than before. After some very rapid and consistent improvement which included these changes as well as removal of another IV and the feeding tube, and the addition of more therapies, we were trying to put everything in place to be able to finally go home.

I had felt that in many ways she had exceeded the parameters previously set on going home yet with her rapid improvement the doctors thought that it was just too soon to tell. We had been doing everything we could think of to get an exit plan in place including some packing and followup appointments/arrangements made. But as we have said before - Sylva is full of surprises! Tuesday was the day we were aiming for - then Sunday became part of the discussion. Saturday a.m. we were so surprised after their second look at her to hear that they had moved it up yet again and she could go home that day!!! While I was busy trying to get things in place as far as medical equipment and such I received the news that she had spiked a high fever and that changed everything. Immediately a number of tests were ordered and more meds given. She had been weaning off some of the meds but a high fever would not likely be caused by this. What a shock to have all these changes in just a few quick moments!

We are finding that even good news comes with its own stress load - it's like you feel that some ground has been gained and now you are ever more compelled to defend that ground fiercely but you can't really claim it as your own because in just a moment and without or despite any input from you it can be long gone. The whole scene can change instantly. Someone once told me Sylva had been sent to me to teach me to 'lighten up' ;-) Well that certainly includes letting go of expectations and there's still a long way to go.....

I found out that my prior assumptions of full medical coverage were a little naive. It turns out that one or more of her meds is very unlikely to initially be approved by insurance. Since she will be going home with a number of meds as well as a wheel chair and o2 there will be a number of changes. Her cardiologist has explained that she has lost about 1/3 of her total lung capacity and having Downs Syndrome she didn't have the normal amount to begin with. She has severe pulmonary hypertension that will need to be watched closely to avoid heart failure in the future. The preferred rx, considered to be vital to her recovery, is also the one likely to cause the most red-tape issues so letters have already been prepared to help this process along. We feel confident that this will work out.

Today Sylva was really excited when they lifted the restriction on her going out and she was able to "go to primary". There is an LDS branch at PCMC that holds a Sacrament Meeting in the auditorium and also brings a Primary lesson to kids & siblings that are able to receive them. Last week she had a great time with the primary sisters that came to sing to her. I think they surprised her when they agreed to sing more than the usual primary songs (There may have been some Celine Dion and Sugarland in there too - some of Sylva's other favorites ;-) Today she was able to listen and sing out in the hall while they finished the meeting and then they came and gave her a lesson & stories too.

This has been an incredible week and looking at her now it is difficult to believe she is the same girl she was just 1 week ago!