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, October 5, 2011

Post with out photos

Do you hate it when I post without offering a photo?
I do too!
 I promise to get something done about that.
Until then!

Monday was Gator's follow up with the Dr. Su..... We rode Trax to our appointment. Not sure if I will do that again. It did save time and head ache a little but it was extremely awkward to carry Gator's oxygen tank, the diaper bag, my purse, and the baby. I looked like a regular pack mule. It was fun for Gator, not so fun for Munchie, and so I think we will pass next time. Gator had to have an Xray, EKG, be measured and weighed, his saturation's monitored, blood pressure, and of course heart listened to. It was a pretty fast visit. Everything was awesome!!!! His x-ray looked great. He is weighing in at 34 lbs and is taller maybe? 3 feet 3 inches! He was looking so great that we decided he could stop wearing his oxygen during the day! He is so excited that he doesn't have a leash anymore. I am so excited I don't have to worry about the half-child (it seriously seems like I carry another child around with me when we have that tank. Plus there is worry involved, like if you have enough air in the tank) Things from a heart perspective look really good. Yesterday he wanted to run by the grocery cart instead of be transported around in it. It would be nice to report that his appetite is improving but it isn't yet. I would also like to think that he is somehow, magically, going to be able to do things that were hard before....

Take for instance his seat belt.

I have had it with his seat belt. He is big enough to manage his belt on his own. He gets into the car and plays around until we are out on the road and then tells me he needs assistance. GRRRRRRR! Why not sit in the car, work on the seat belt while I am strapping in the baby and then if he needs me, have me help, before I get seated and belt myself.... He waits... I was finally fed up yesterday. I had gone through all the counting, ignoring, and patients I could muster. I was trying I tell ya! finally we are about ten blocks from home and he is carrying on. I told him that instead of sitting there messinga round he should have gotten it on. If he didn't get it on then he would be put to the side of the road to walk the rest of the way home.
I got to three.
I pulled over and got out, making sure we were safe I walked him to the side walk and he was bawling. I knew he was scared.... I wanted him to know that seat belts are not games, and they are very important. I went and got back in the car and pulled out and told him to start walking. I had to flip on my hazards and drive in the turning lane but I started to follow him. He stopped crying and actually started to giggle... AAAAHHHH this was fun for him. This was not the message I was hoping to drive.... no.... walk home!(hehe) I said out the window. "Would you like to get in the car and try that seat belt again?" He looked at me and smiled "ummmm nope" My blood started to boil. This was not even going to work. I thought I had it nailed down. DANG GIT! I asked him again after a few more minutes... His answer was the same. Okay, time for a change. I stopped, held his hand back to the car, opened the door helped him in, and jumped in. I informed him that he would be going to bed when we got home. There was the punishment I was looking for. He was mad he would miss out on the evening and possibly dinner. I can't get him to eat why would I make him miss a meal. Making him eat it all was a bigger deal, he went to bed after. Only he played in his room until ten and I told him to knock it off and go to sleep. He is a turkey! He better be vigilant about that seat belt from now on, otherwise it is to bed with him.
Ry was freaking out about having him walk until he started to smile... This would have put her over the edge. I am totally going to have to parent each child differently. I can't wait to see how Munchie-munch is!

Speaking of that little Girlie! 
Today is her BIRTHDAY!

I can't believe she is one! 


Terry said...

That is so funny. I am still laughing. He is such a funny little guy. But it is so true, every child is so different.

likeschocolate said...

Great news! Roman had an MRI yesterday. We are still waiting for results. Hopefully the are good. Hey, I was wondering if when we come there in dec if Roman could borrow a pair of snow pants from gator for a few days if you have them. He wants to try skiing. Still need to ask dr if he can do that, but we don't want to buy pants for just one or two days. No need for them here in Georgia. If you will not be buying any this year no sweat. Roman is a size 3-4. Hope to hear from you soon. Kelleyn

Aimee Hardy said...

What a little stinker.:) There is nothing that will drive a momma more insane than a child who laughs at your discipline. That is Jack's favorite game. Glad the Dr appt went well and he's looking good.

Elk Horn Specialties said...

Wahahahaha!!! I love your family! Thank you for sharing! Just remember it will all be over before you know it and you just have the memories to make you laugh! so Glad Gator is doing good and Happy Birthday!!! Munchie girl!!!
Love you, Aunt Lisa

Angee and Thom said...

Oh poo! I am having the same trouble with my 3 yr old, and I thought what a great idea! I'm going to try it anyway, maybe she will get the message. It beats the heck out of listening to her scream "I do it!" while I try to wrangle her into buckles. They all come in a different package, that just means our parenting has to change too. Its good to know I'm not the only one.