Thursday, May 27, 2010

Remembering Why We Do It

It has been busy as usual around here the last few days. Settling back in is always busy whether it was from a 2 day stay or a two week stay since both require halting our lives in the middle of everything and throwing everything required for a small army into some bags and leaving everything exactly as it is only to return however long later only to find things exactly how you left it only smellier and somehow you have twice as much to put away. Sometimes I get everything put away quickly and other times I think I'm afraid I'll jinks myself if I unpack our bags to soon. This time I'm being slow about unpacking... or maybe that's just my excuse for being lazy, LOL.

I think it might have more two do with my 3 year old who's hyped up on steroids and hasn't been sleeping at night. Yep, right when I have been running the baby's IV abx between 12:30 and1am he has been deciding to get up. Finally at about 4:30 this morning I went and got Wil and made him get up with Liam since I couldn't take the wild boy jumping on my bed any longer. This morning I found out he had gotten into a bag in my room that had a package of sour gummy worm's in it and decided to help himself when I had drifted off for a minute. It all made a little more sense then. He was barking like a little seal and trust me he didn't let that stop him from jumping on my bed all the while! He had his pre-op appt. today for the his sinus surgery. More steroids before the surgery to get all the swelling in the sinuses down, ohhh goody! *Sarcasm Intended* But I'm sure the best part will be the packing afterwards! try getting a 3yo who constantly picks his nose to leave that in for like a week. That should be interesting! Of course he'll get his ear tubes put back in as well but since this is set #3 nothing new or exciting with that.

I did meet with the programs director at a new school for both the kids today. It was very refreshing to talk to someone who knows the whole system around here and who has all the right connections for me! It's a school that accepts kids with all sort of issues and it's half "typical" kids who are used as role models and half kids with medical or developmental issues. It's an amazing school with every kind of accommodation including an amazing playground that is completely covered and has a cooling system with a butterfly garden and it's own rock waterfall... Ya, it's so nice! Liam is on the wait list but Riley will be able to start a new program in a few weeks. It's mostly for socialization, it's only 3 days a week and 3hrs in the am. This is perfect for her and the classes only have 10children a piece. One of the days a parent goes and participates but not the other 2 . Of course her nurse, Wil, or I will always have to attend with her to give her medical care since they don't have an RN on staff. Liam also needs to have an IEP written. The whole school thing is a whole new thing but hopefully we should have it all straightened out by the fall so that's good!

Don't forget my school started this last weekend and we are trying to get approval for some extra services to help so Wil can start back to school in the fall.

And then there is Riley.... I have been trying to arrange everything for NC. I had called the nurse there to get a referral for a program that gives reduced airfare to kids traveling for medical appt, when she calls back to say they changed the appt. So after 2 days of phone tag and a lot of confusion they changed the appt to a month later. We will now be going on July 14th. There is some autonomic specialists that wont be there until then and all three of these drs. will be together to do specific autonomic testing on her apparently. I am nervous about her waiting that long since she has never done well on 100% TPN and nothing in her gut but I guess we will just play it by ear. This appt and testing is really important for her! Ya, and the temp and autonomic issues are still happening.... I am just going to keep being oblivious and live in my happy place until told otherwise and think it's just from her teething. We had also lost another nurse last week so we've only got 3 days a week covered again. Hopefully one of these days the agency will call with some good news like they found us a new nurse.

As you can see this has all gone on in the last 2 or 3 days and we manage to stay so busy it will literally make your head spin. Add school work, house cleaning, phone calls, running errands and a few days of work and some days it feels like you even forget to breath your so busy! I love the evenings though. They are so peaceful and quiet. You can see what you did it all for. Two very happy and normal looking children who love each other so much and are totally oblivious to the fact that they have anything "wrong" with them and thinks it's the norm to have a nurse hang around your house. In there eyes and mine they are perfect and that makes everything we do worth it!

1 comment:

The T said...

oh so much to comment on here...but mostly, my hugs and prayers are with you and your sweet precious family! And you summed it up so well at the end - at the end of the day, looking at those two little cherubic faces playing together (or 4 in our house) - THAT is what it's all about, what it's all for. You're an awesome mom, Lauren!