Sep 23, 2014

{camp sunshine and then some...}

 we spent our third year at camp with isaac early in july (i've had this post written forever and just never published it!). every year is better. we feel more connected, less overwhelmed and hopefully learn some things new. it was also the first year that isaac wasn't happy to see us when we came to pick him up from playing with all of his buddies. he had a blast! we spent a bit of time on the front and back ends of our camp trip to travel, as always. visiting friends and exploring the northeast. maine has become one of my favorite places. maybe i would feel differently if we actually ever visited in the winter, though?

just a quick isaac update. he is turning THREE in october!! this past year has been really quite peaceful for us. we've just been soaking up the time together and taking a bit of a break from thinking about FA - as much as possible, at least. right after camp, though, we got a blood test back that was a bit unsettling. one of the things we just have to wait for (a not good kind of waiting, just to clarify) is for his white and red blood cells and his platelet levels to drop. and they have been. we have a huge spreadsheet that we enter in all of his numbers and if you look from the time he was born to now, its been a gradual decline, but in the past four months his platelets have taken a pretty significant drop - for him. its more than we've ever seen. so that was...awful feeling. it was a most unwelcome reality check after a pretty quiet while with him.

but a drop isn't necessarily a huge reason to panic. it just means that we'll need to keep a little closer eye on things. so as a followup, he had a bone marrow biopsy this last month. we hadn't been in a hospital for awhile, and we got to be with him until he fell asleep, which i was SO grateful for, but watching him go under anesthesia was unexpectedly hard! i actually cried as we left the room, which, for some of you that know me, or have read about some of my past struggles with this - thats a big deal! it's been really hard for me the last few years to be expressive. it was my way, i think to try to protect myself from a lot of hurting. it started as a sort of survival thing for me to lock into this emotionless/business mode, but it took awhile to realize that i was also shutting myself off from some joys, too. some of that was really helpful. keeping a clear head talking to doctors was a GOOD thing! but for me, some of it turned out to to not be really healthy. god's been teaching me a lot about that this past year. and i think i'm starting to reach more of an in between again. more like myself :)

but back to the biopsy! isaac was a champ, as always. i didn't need to worry about him :) he's getting older and is so much more alert and knows exactly why we go to hospitals, which i hate for him. but he stayed pretty calm and even woke up saying 'hi' to us. i imagined he would be really sore and upset when he woke up, but he recovered AMAZINGLY and actually since then, has just exploded with so many new words and is counting and singing and starting to walk (with us holding his hands). we have this running joke - daniel and i, but isaacs therapists have actually noticed it too - that every time he has a procedure, his little mind just explodes and he hits some kind of a growing or learning curve. maybe its just that he becomes a little more determined each time, i'm not sure...

he's also starting preschool in a few weeks! sorry i'm just dumping all of this information. it HAS been awhile. its mostly just because his therapies transition from in-home to public schools once he turns three. so we don't know exactly how things will work out yet. we still have a few options to work thru this next week, but it will only be two days a week and all of his therapies - speech, pt, ot will all be done there, which will actually be really great! so if you want to be praying for isaac right now, i'm praying we get connected with a wonderful teacher! maybe i'll post again kind of soon and give you all a preschool update. hopefully so!