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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, March 30, 2010

Try one

These are all a little too dark. I think we are going to need a re-shoot. It was hard enough to get him to want to do this. Nothing stood out as THE Birthday Picture.... He posed himself.

I also want his coloring to be a little better. Notice his fingers, so multi-colored. His lips are also a little too blue.

Muscles....

Not sure if he is doing the "Vote" pose or if he saw something he wanted me to take care of.
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Monday, March 29, 2010

Getting better

I wasn't going to post again until I had some pictures. I haven't posted pictures in a really long time. The problem is I haven't had the energies to do much. I am barely squeeking by on minimal house maintainance and a few clients here and there. My visiting teacher took Ry for the afternoon so I snagged a nap with the Gator boy. I was feeling pretty good after that and decided I needed to bust out my camera and get Gator's Birthday pictures done. So we set up a little shoot in his room. I still need to edit and go over everything and there was no energy left after pictures with an almost three year old and making dinner... Which I had to do with windows open so I didn't gag on all the individual ingredients... EWWW... isn't raw chicken sick anyway??? Then add a super sensetive gagger on top of that and it is a bad combo. Raw chicken isn't as bad as raw beef, cause the smell of cow blood just about does me in...*Gag* *choke* *Gag*

BTW- I recently found out that Fruity pebbles go down the same shape and color as they come back up... I thought I was a better chewer than that....


EWWWW>... Enough... Sorry...

Anyway.... I am not complaining... I am just saying...

The weather is better and I think we have just a few storms around the corner. I really should be out working in my garden...
I have these huge plans but I may end up with a lot less, just so I can handle it all.
The grass is perking back up (except for the places I burned when I over fertilized last fall... OOOPPPSIE) but I am going to have a ton of Tulips and Daffodils.
So bring it on...

Gator man is finally on the mend. We ended up at the new PCMC facility for x-rays of his lungs... The only reason we went is because I couldn't get his Sats above 72. He kept dipping. If you remember it wasn't a quick fix either because we sent all our oxygen back and had nothing on hand. Our wonderful pediatrician wanted to see him anyway and in her office he was at 65... Yuck! She wanted to make sure those little lungs were clear. Everything looked great and he did a turn around the next day. I think it was because I stopped giving him the neb treatments which she said may be making him shunt a little.

K- pictures next time... I promise XXXXXX

Monday, March 22, 2010

So that is it then?

After hacking all weekend.. Temps and cranky man all day Sunday.

I held him most of the day... I finally broke down and called the Dr..

(daddy may have kindly suggested as well)

Off to the pediatricians office..

Weren't we just there?

It seems as though we have a bug, the start of a nasty bug, a bug that we have avoided for almost three years...

The darn-toot'in RSV bug...

We caught it early and we have started neb treatments... He is breathing better and we totally avoided the over populated RSV infested hospitals... So now we take it easy... At least it peaks and he should be feeling better soon and it isn't another crummy bug. At least he is bigger and can fight it better. At least we caught it early enough that we didn't need to make a stay at the hotel on the hill. At least he has been having good naps which lets mommy have good naps..

At least........


poor little man.

More of Ry

After falling and scraping her hand Ry exlaims..
"Dang, I hurt my hand right HERE! And that is my Favorite part of my Hand!!!!"


Personally I like my hands equally. If she started talking about belly's, thighs, or even those pesky love handles.... then I guess I could say there would be parts I wouldn't love so much.
But hands, nawh... Those I like equally.

Wednesday, March 17, 2010

Forgive this girl!

You few who do keep up with our little family will have to forgive this girl. I am going to "share" some of my feelings now.


Last summer our little family experianced a devestating pregnancy loss. It was hard on all of us. After many months of healing we were back to our old selves and doing very well....


I was content and perfectically happy with my two miracles. I had decided I would no longer be greedy and that our family was just the way it was supposed to be. I was going to work on loosing weight from chlomid, and enjoying every minute with the hubs and kids.

In the end of January I started to feel "sick" and exhausted all the time...

Hummmm?????

I had jumped the gun so many times buying preggers tests that I wasn't about to jinx us.

(I should buy stock in pregnancy test) I held off until my birthday.

When two little pink lines appeared..

Happy Birthday to me!


Waiting even longer to call the Dr.


I made the call only to find out my OB is going to retire in June. Booooo... That is the second one that has done that to me. Plus, he knows my whole history and I love his nurse..

Bugged......

I decided maybe I'd give a closer Dr a shot. I made the call... We set up the phone interview, sent off the DNA/HIV packets and made an appointment for a first visit. The morning of the appointment I shipped off the kids, had daddy in tow and we headed off to the most scary, anxious appointment ever. In all my misscarriages when visiting the Dr for the first time we have never heard the heart beat. Then we know that it is going to be a long road of sadness and healing. Because we have fought inferetility I sometimes think that we shouldn't have to have misscarriages or broken baby hearts. It doesn't seem fair. Then again, Life is not fair and because we have made it through some challenges doesn't mean we are exempt from more. This is where I can feel my Saviors love and support. In the adult session of Stk conf. one of the speakers said to Fear not and just have faith. So that is what I did. And prayed like crazy that I would have strength to accept whatever it is that I am to do.


I said a quicky prayer right before I got out of my car to go into the appointment... We marched up to the desk presented our papers and finished the last bit of questions......

When......

the lady says "okay and how will you be paying for all of this since you are self pay?"

Nice lady with the crazy self pay notion, say what?

"Well yes, you don't have insurance and so this will be self pay"

Ummmmmmm we have insurance and here is the card...

They don't take that type of insurance...

My heart goes to my throat, then my stomache, I think the room started spinning too....


I may or may not have wanted to cry right in front of everyone and pound my fists and demand that they take my insurance today to see if everything was going as it should inside me.....


Well, we gotta see a dr. that takes our insurance...

They said to try next door....

Which just happened to be the next desk over...

Sweet...

They have all my info in the computer, no paperwork at all... no phone interviews and they take that card I am holding... The Dr. can get me in.... THAT MORNING... A female Dr.....

I may or may not have wanted to jump over the desk and hug those two women, and bring them a huge treat for making my day.

The Dr. was wonderful, she is caring and perfect for me. The little snag, she can't get me into see the untrasound people until two hours later....

Back in the car I say another prayer...

Then make calls to shuffle children and try and drink to fill up my bladder.... Children shuffled and water in me i go in to wait for the appointment... The tech is running behind and I have to go potty so bad that I can't sit and I try walking around... Nothing.... Ahhh there is going to a serious situation if she doesn't get to me soon.... I tell the desk that I am so embarrassed but could they see how much longer because I am not going to last....

Another few minutes...

BUT>>> I can go a little to stop the pain.... I must stop..... I gave myself a little pep talk in the restroom...

Okay sista, you can't go all the way, you must have control....

Whew... I made it..

She called me back, She told me right off she couldn't really tell me anything.... Ha... I have seen enough echo's, x-rays, and these types of ultrasounds that I would know.... And know I did. It looked just the right size and shape I could see the umbilical cord and picked it our for her, I could also see the little heart beating away and knew it was there.. I asked her to measure it.... Ahhhh.. It was there, I could hear it.... It was amazing....

I did hug that sweet person. I couldn't help myself.

(after I went potty)


Heavenly Father knows what is best for all of us... I know that he loves my little family and could tell that if we were patient, content and happy with what we had He would bless us. I feel lucky to have this FREE BABY because both Ry and Gator are Chlomid babies. I am also very humbled because I know how hard it can be to build a family. How sad it can be when it isn't in the cards for your family to have another child and it is for someone else, but you want it so badly.


A COMPLETE SURPRISE!!!!!

One I am hoping for all those who are wanting it also...
Due date- 10-10-10

Monday, March 15, 2010

In Ry's words

After a tickle fest with daddy, Ry tried to get back... NOthing she did worked to crack daddy.. Until she finally sighed and called him a .....
Shilly-it.....
What is that? we don't know!
We laughed pretty hard after that!

Friday, March 5, 2010

I got my wish!!!

After I cut back four of the six rose bushes, after I started my garden plan..... Today it snowed, and it stuck and I got my wish. I am going to snuggle in today and not worry about the yard until next week when the snow melts again.... Yeah!!!!

Tuesday, March 2, 2010

What!!!

Is it March already?
Did February seem to fly by or was that just me?????? The snow is slowly melting off the ground and the warm weather will be here soon. It is time to start planning my garden and getting ready for planting... I guess I could go out and plant some things right now.... Wow, that seems a little wild. I should get my starts started any day. Does anyone else feel rushed all of the sudden. Warm weather also means that the sickies are a little more at bay, and that we can enjoy people more freely. I could use a couple more days of winter just to stay snuggled up a little longer. When I think about spring, I think of all the yard work that goes with it... I like yard work, but I could hold off on it a little longer. Plus we can always use more water RIGHT!!!!! (or as us Mormons call it, MOISTURE)