Pages

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.

Wednesday, February 27, 2013

Sweet!!

We pretty much saw this ladder truck in the parking lot of Lowes!! Yelled "fire trucks are the coolest" to the awesome fire guys and they let us check it out... We got to see the inside and turn on the lights!! Best trip to Lowes ever! Ry was acting cool and didn't want to be in any photos!! They even gave us some rad temp tats and badge stickers!!!



Crooked crack update:)

May had her Neuro appointment Yesterday. What a simple visit. The whole thing lasted about five whole minutes. Dr. Walker(who is super nice) looked at her bootie and her feet, told me he had reviewed the ultrasound findings and came to the same conclusion that A) she has Tethered cord B) she needs a MRI to further diagnose C) she has great muscle tone in her legs and feet... So that's it people!!! I pretty much knew all that already.. I did get to ask wether she was in pain which she isn't. So we will plug along till April 9th for her MRI...

Gator got into the French program next year.. I am stoked for full days of school for him. We will be on C track. Yes our brand new school is already over populated and going year round. I wasn't super thrilled at first but I am feeling better and better about it. I can roll with it! I can roll with anything.. I just need to figure out what to feed Gator at school, Top Ramen doesn't travel well and he isn't really a sandwich kinda guy. Not to mention he is extremely slow. I think it's a heart baby thing to eat like you have hours to finish.. I might be making trips to his school each day to take him lunch. He will figure it out I am sure.
We finally rode the Ferris wheel at Scheels for FHE! So fun!







Wednesday, February 20, 2013

Nothing like...

There is nothing like pretending you are in a parade. Elbow, elbow, wrist wrist wrist... Touch the pearls, blow a kiss... All the while you are just being pushed around on a machine in the hardware store!!

Monday, February 11, 2013

Then VS Now

I just want to throw it out there that I am changed forever. I believe in a good way but, no less changed. You see, when Ry was born I was still pretty OCD.. It was easy to manage one baby and the house and my job and my other duties and responsibilities. Ry was bathed every day (as was I) she was dressed with coordinating bracelets and bows. I was able to eat something on a regular basis. I had a plan.... Gator threw all that out the window during his hospital stays. When Munchie came around she was easy compared to what we had endured with Gator. With May who I have affectionately started calling Squish or Squishy...(I know you were all wondering what we would nick name her. She probably won't appreciate it either. But don't you just wanna squish her?) I have completely dropped the ball people!!!! If she has a shower and if I get her dressed bows are completely useless. The house is a disaster from what I am used to managing and I am still skirting by on leftovers...
I know that this time when it seems like chaos is an everyday event will soon be over as we (hopefully please) get back into routines and schedules. So if you see me and I look disheveled, smell slightly of spit up and BO and don't have my family looking perfect. Just laugh cause you've either been here too or look at me sympathetically.
For those of you thinking about having more than three, I won't lie to you.. It's pretty hard!
I will leave you with a few photos of miss Munchie- crazy girl.



Friday, February 8, 2013

Thursday, February 7, 2013

Ry's squiggle art and story

This is the original run-on, miss spelled story:
One day I saw a flying mostashe he flaw over my hoase he asked for some food I said no and he stock his tounge out at me I said you are wird I said do you want to live with me ok you are wird to do you want food yes please your house is cool do you want to go inside thank you verry mutch. The birds got confussed when flew up to see the bird thay said what cind of bird are you you are not a bird you are a mostashe.

Translation:
One day I saw a flying mustache. He flew over my house. He asked me for some food. I said "no", he stuck his tongue out at me. I said "you are weird. Do you want live with me?" "Okay, you are weird too. "(Said the mustache) Do you want some food? Yes please!!! Your house is cool! Do you want to go inside? Thank you very much. The birds got confused when (the mustache) flew up to see the birds. They said "What kind of bird are you? You are not a bird you are a mustache."

Wednesday, February 6, 2013

Baby girl

After some yummy lunch this girl is sleeping off a milk hangover:)

Friday, February 1, 2013

Lost the tooth

Gator has had a wiggly tooth for forever. Auntie Pres suggested that gator attach it to one of his remote control cars with some floss and then he would be in control of the "pulling out". He just hasn't been brave enough to give it a shot. Today I mentioned it casually to him to see if be would be willing. He was reserved at first but I told him he was totally in charge. He chose which car he wanted to use then we got out the floss. I tied the floss to his tooth with three knots, kinda hoping that if the car didn't pull it out we would have to pull it to get the floss off. (I was trying to be sneaky) Then we tied it to his car. I was pretty sure that the car wasn't going to be strong enough because he tried two times without much success. On the third go he said "dang the floss broke" but then noticed the fresh gap in his smile. The tooth was out and he didn't even know it. We didn't see where the tooth flew and have searched the kitchen. We can't find it any where. Poor Gator will have to write a note to our tooth fairy in order to cash in. That was the most entertaining tooth pull in a long time! Of course Munchie wants in on his action... So we have a picture with her teeth too!