Saturday, April 2, 2011

No matter what


You know how you promise yourself your gonna start your diet tomorrow? NO MATTER WHAT and then tomorrow comes and you don't.

Then you say OK now tomorrow I'm gonna start..and this time I really mean it NO MATTER WHAT and then you still don't..

Yeah well, that's what it's been like trying to update the blog. Every night I say tonight NO MATTER WHAT and then I look at the clock and it's 12:30 (or later) and I know I'm gonna be exhausted the next day so I don't update but I say tomorrow NO MATTER WHAT.

So here is my NO MATTER WHAT post....


I haven't updated the blog for several reasons Not much is happening really.

We're in a lull where we are waiting for Dr appointments. We have referrals but since nothings stat we wait. But the calendar is getting full. We have 9 Dr's appointments this month and it's only the 1st of the month!

You are doing so well medically. Your tolerating your feedings, and your oxygen need are decreasing. You've even gained weight! At our last appointment you weighed 8 lbs 14 oz! A whole 13 oz in less than two weeks. Yay!


We've even gotten you down to only two meds - an iron supplement and vitamins. That's it! So healthy.


No laptop = no blogging. We still have the old laptop the one I destroyed before I destroyed the latest one (see why my husband adores me) which works but only when hooked up to the old desktop which also works but it from 2004 which makes it practically an antique. Both though are in my craft room and I have almost no access to them during the day while the boys are up and about and am too tired to go in there and blog at night. But this will soon be remedied as George got me a new netbook so I can get back to blogging more regularly. (I'm really really going to try to keep from beating up on this one)

One needy 2.7 year old and a medically needy 2.5 month old leaves very little time to get on the computer even if I had one to get on. I was about 4 hours into my first day alone with the boys before I realized I wasn't going to be able to do this alone.

Now that the nurse has started it sooooo much better and I'm so grateful the insurance is paying for one. I honestly don't know how I would survive with out home nursing.

and finally...

I've been in a really dark place for the last weeks and I've been afraid I would only be able to blog dark things so I've held back.

I'm better now though.

I've tried to write about the dark place I found myself in but just keep writing and deleting. Starting different versions of the post only to save them and not publish.

So for now I'm just going to publish this post as it is. Maybe I will publish the post about my dark place later. Maybe not.

I keep reminding myself I'm in the place I always wanted to be.

I'm living the life I dreamed of.

Married to a man I adore (though I do want to beat him somdays..)


Two beautiful, loving, healthy boys ('cause at the end of the day you are incredibly healthy for someone with CHARGE syndrome)


A home like I only wished for.


and a future filled with so much possibility


I'm living my dream. In the place I always wanted to be. I'm so lucky to be here.


It's just so different than I thought it would be like.


and I'm learning how to deal with that.


I'm trying to anyway.



Pierce absolutely loves joining you in the sink for your bath. He hardly fits but somehow manages to squeeze in with you. He even helps out by washing your feet.



Best big brother ever!



Cousin Kelly and Caitlin came down to visit you (I guess I forgot to get a pic of cousin Caitlin)


Uncle Pat got to meet you and held you for over an hour even though he had to get going. Uncle pat is actually very happy even though he looks mad in the picture.


Toto I don't think we're in Kansas anymore!! One day worth of approvals and one denial letter from insurance. Your care book is in the background. The care book is so necessary. I have a section for each of your specialist, therapies, medical equipment, insurance, bills, receipts, phone long, calendar (for our many many appointments), and medicine section. You just look so cute in your bath I had to get a shot of it. Like the carefully place soap bubbles?
We were getting your machines ready for the night and turned around to see Pierce had shared his letters with you (one of his most favorite toys). We think it stands for #1 brother. I like to call this "the unit". In the back you can see the home oxygen concentrator along with the home fill unit on top of it. In the front is your feeding machine, pulse oximeter, and nebulizer machine. You can't see the suction machine which is hiding in the playpen. Every night we have to bring everything upstairs (except the oxygen concentrator) and set up for the night shift. The great thing is you go to sleep around 8 and sleep through the night till around 7. I even turn you and change your diaper and you don't really wake up. How awesome is that?
There you are hiding amongst all the stuff!and this is what happens when I try and get on the computer...

Pierce vs. the black jelly beans. Just awesome. It's a dang good thing I love him so much. I had just given him a bath and had to give him a second one after this

8 comments:

Chris said... Best Blogger Tips

it's so good to hear from you and see that you are all doing relatively well (especially the too cute little one!). I check here daily to see if you post an update and say a prayer for your family as well as send you good wishes. You won't always have a dark place and every day won't be the same. When you're on the bottom of the dog pile, there's no where to go but up! Hang in there though-you have three guys there that love you (one of who looks like he really loves black jelly beans too)!

Molly said... Best Blogger Tips

Oh, I remember those dark days...probably a little too well. Even if you don't ever publish those posts (I've never posted some of mine) I still like reading them every once in a while. It's okay to have dark days, I still do, even though I do have everything I want in my beautiful family. Have you ever read the poem "Welcome to Holland"? Google it if you haven't. It's one of my favorites.

The first year of doctor appointments is completely overwhelming, and completely sucks. But that gets better too!

I love, love, love the pictures of the boys in the bath, or I guess sink. :) Those are definitely ones to treasure forever.

Leslie said... Best Blogger Tips

Someone once told me that depression is a healthy response to change. While you don't want to stay there too long and/or too deeply, I'd say that what you're feeling is absolutely normal and it's okay to be there. Truly. You will find your way out, and we're with you all the way. Lots and lots of love to you guys, and thanks for the update.

ellen charge said... Best Blogger Tips

love uuuuuuuuuuuuuuuu

Stephanie said... Best Blogger Tips

They are both adorable and the sink pictures are priceless. I would love to send you all a care package. Is ther an address we can send something to you at. I can not imagine what you are all going through but I am thankful you made it home. Newborns can be overwhelming without all this other stuff to deal with. I am sure insurance companies are a nightmare to deal with. Take care!

dxeechick said... Best Blogger Tips

I am in LOVE with Mason's hair. And I love hearing how well he's doing. I'm glad you got help and I'm sorry you are going through hard times. I'm sending internet hugs your way and my husband and I always keep your family in our prayers. I've had some mighty dark days myself, so I can definitely relate but I know what you guys are going through has been a long and hard road. You have every right to feel the way you do. It can only go up from here. <3

Kristi said... Best Blogger Tips

So many things to say...
- LOVE seeing the pictures of every day stuff at home with your two sweet boys.
(Your every day life took an unexpected turn... of course you have dark days. Totally normal and it's great that you are aware of them. Writing about how you're feeling, whether you choose to publish it or not, is so helpful. Keeping it so you can look back will help you gauge where you are presently. I still have some dark days and sometimes I do hit "publish" and am amazed at the support that's out there!
:-)
- Glad you have nursing in place and that it's going well. The beginning is really hard and having extra help will definitely reduce the darkness. Not only that, it will help you be a better YOU... thus a better mom to both your boys if you're not stretched trying to be superwoman 24/7.
- Try and get some sleep (I know... ya right!), but try.
- Suggestion with your binder... once you have a computer that works and some spare time... put together your own brief history that you can edit/add to easily when necessary. It's super handy to have something to print out and hand to new docs that isn't two inches thick! It's also easy to have it and write "see attached" on all those "History and Physical" forms for those nine upcoming appointments.
I can email you privately with how I've set Gracie's up, if you'd like. When we moved, I handed it to docs down here and they were so grateful... two jokingly offered me a job! I've also used it every time we go to the ER (which I hope is NOT in your future, of course) and they, too, find it so helpful.

Did I mention how much I love seeing all the pics of everyday life?! LOVE!

TusaRebecca said... Best Blogger Tips

My guess is the dark place thing is completely normal! You've been through so much and now is likely the first you've been able to relax and realize that you're zonked. I mean...I'm no expert or anything, but that's my guess! My answer to everything is ice cream or a really nice coffee. Or sleep!

Your little guys are adorable! Thanks for sharing all the great pictures. You continue to inspire a lot of us. Thanks for that!