Tuesday, April 28, 2009

A whole jumble of stuff

First a little update on Jax. He still sounds like a bull dog, and he's needing more suctioning, but no more fevers. It must just be a good old fashioned cold. We are just waiting to hear more from our hemo doc about the clotting specialist he's going to call in Colorado.

I'm a jumble of feelings right now. We've been through financial ruin since we had Jax. And a lot of you probably know but we got a settlement from his brain injury and are finally climbing out of the hole. It just doesn't seem to be happening as fast as I would like. We've been frantically trying to rebuild Rays credit, it went up but today it went down! What the heck, their so quick to take points away, its crazy. I don't know what to do. We've paid a bunch of bills off, we even opened a credit card, use it once a month for dinner or something, and then pay it off. They say that helps. If anyone has any credit advice, I'll take anything.

My sister-in-law sent me this poem and I thought it was very sweet.

Heaven’s Very Special Child

A meeting was held quite far from earth
It’s time again for another birth.
Said the Angels to the Lord above,
This Special Child will need much love.
His progress may be very slow
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won’t adapt,
And he’ll be known as handicapped.
So let’s be careful where he’s sent,
We want his life to be content.
Please Lord, find the parents who
Will do this special job for you.
They will not realize right away,
The leading role they’re asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
In Heaven’s very Special Child.

I've got some friends on here that you probably know, but need some special prayers tonight too. Miss Zoey is starting her final round of chemo tonight, and it will be a double whammy for her, so pray extra hard for her to fight this like she has all of her other rounds, like a champ. Here's a video from when we visited her. You can't really see Jax but I didn't know Ray was taping or I would have held him up. If you look close you will see Zoey blow us kisses. We got a lot of those that day. Ignore the mommies talking in the background.

Also sweet little Arabella needs prayers. She is the one that is reminding me of what I went through with Jax for 4 months. She is on high vent settings and everytime they even touch her she drops her sats, she's very sick right now, pray for her also.

One more, Jax little Emerson just got her second transplant. Liver, bowell, kidneys, pancreas, all transplanted. She is also very sick right now, and if she rejects this then there will be nothing else that can be done for her. She needs prayers. I know there are many more that I've forgotten, so just pray for everyone. JK

Oh, one more thing, Arna, you better come home from the hospital tomorrow, Jax hasn't played with you in a while and he misses his friend.


Mommy to those Special Ks said...

I love that poem! It was on my blog this week for my Monday Moment for Down syndrome as well :).
I wish I had credit advice for you, but I really don't. I will be praying about it though and praying that Jaxon gets over his cold quickly! Praying for the other 3 little ones as well. Thanks for the update!

Cammie Heflin said...

Great poem! Praying for all of the little ones! I think Addy's birthparents went through a lot of the things that Bella's parents are going through right now. She was in the hospital 5 months before coming home so I'm sure they could relate. I pray that all of these babies heal quickly!

Emily said...

I have that poem in Justin's room. It is a favorite of mine. I will keep your sweet Jax in my prayers along with all the other kids out there that need the blessings.

Michelle said...

I love that poem...I have read it several times...love it! :) Hope you get through financially...we can feel your pain as I have mentioned in my blogs...things have been very tough here too. We'll pray for you on all fronts! :)
Answer to your question: they are testing her for any other chromosomal abnormalities, all the leukemias, and any other blood abnormalities within the marrow. Their main concern is WHY are her ANC's so low all the time, are they that way in the marrow too, or is something destroying them...so I guess we'll see. Thanks for all the support!!! Oh and I called on the O2 stuff for Cali...medicaid won't pay a dime so we have to rent everything over there...no biggy but a little extra $$$.

Stephanie said...

Ugh! We are right there with you. When V was born I had to quit my job since we have no one to help with his care. We moved from a three bedroom house to a two bedroom apartment. Just when we thought that was bad my husband got laid off and we are now living in a trailer. Not a regular house type trailer but a travel trailer, along with all four kids, two adults, a dog and a fish.. oh, and an oxygen concentrator, monitors, feeding pump, etc. Our lifestyle is like one long crappy camping trip.. lol. I just try to keep in mind that I could be living in that nice big house without my baby.. not an option! Then I eat some chocolate, love on my munchkin, and try to get over it (he he).
You're not alone darlin :)

Junior said...

Love the poem, we will be keeping Jax and his friends in our prayers.

Kim Rees said...

Oh! I don't know how you do it. Jax will continue to be in my prayers and the others on your post. I too love that poem. We have Liliana's baby dedication coming up at church end of May and I have been thinking about finding a poem to read during the service. I may have to snag that one. Very special. Take care and God Bless You!

The VW's said...

So many little ones to pray for, it saddens my heart that they have to struggle!

I love that poem! I've read it many times and it always touches me!

Credit advice...sorry...it sounds like you are doing all the right things. I pray that it gets better! My oldest son always tells his brother, who is always asking for something, "Money doesn't grow on trees in this family!" But, wouldn't it be nice if it did?!

What a cute video of Miss Zoey and Jax! Precious!

Rioux Family said...

I know you think that since I'm the younger sister that I don't know that much about money, but Matt's credit is in the excellent category, expecially for his age. The only thing you can do is pay everything on time and if you have a credit card payment, don't pay only the minimum, pay more haha. Also, I suggest getting a credit card with sky miles, if you use it then pay it off right after, than you shouldn't have to worry.

jjpsmommy07 said...

Will keep all the little ones in our prayers.

Tausha said...

That was a beautiful poem, it made me cry. You are a beautiful person and have much strength that I wish I had. Thanks for sharing!

Conrad, Megan and Our Precious Keaton said...

Hi Lacey, hope you are well - stunning photos!
Could you please kindly send me your email address so that I can chat to you about the package! Thanks so much and hugs to Jax! My email address is cogan@mweb.co.za, Megs

The VW's said...

Thanks for your last comment! Any chance you guys might be moving to Michigan any day soon? :) We would LOVE to have play dates with you and Jax! It's so sad that we are so far away! But, I'm thankful to have met you here on the computer anyway!

I hope that Jax is feeling better! Colds are miserable! Give him a squeeze! Hope you guys have a great day!