Sunday, February 28, 2010

Chick Fil A

Yesterday Ethan had his first experience at Chick Fil A and ate like a big boy! This is huge deal for us. This is really the first time that Ethan has been able to sit in a restaurant high chair and not fall over. He also is now eating anything you put in front of him and is able to pick it up and put it in his mouth all by himself. He is almost 15 months old now! Just a couple of months ago we thought he might have to go to the Children's Feeding Clinic because he was only able to eat very liquid type homemade babyfood but not anymore, thanks to our OT Vicki!
A young couple with a baby in a carrier was sitting behind us and the mom asked how old Ethan is, I told her and she commented on how small he is. So I quickly busted into Mama Bear and had to tell her that he is a preemie with developmental delays blah blah blah. Well, I guess God put us in that Chick Fil A for a reason yesterday because low and behold that VERY young mother also had a sweet preemie who is just starting Early Intervention with our very own Hanover County so I had to give my 5 minute commercial. Poor Mama, she said how her Sister In Law has a baby the same age and is always telling her that something is wrong with her baby because she doesn't sit up or scoot and that Mama just feels so alone. I gave her some Mama advice and explained how Ethan is our 4th and that all kids develop at a different pace and how God only gives babies like ours to Mama's he knows can handle it. Hope that helped her!
Now I'm off to make my egg whites and veggies. Oh, I worked out on Friday with a bootcamp (ran by former Marines) and I cant hardly move and didn't even know that I had any muscle left in my stomach that could be sore after 4 kids. I'll be back bright and early tomorrow morning at 5:45 for some more punishment!

Monday, February 22, 2010

Deflux Surgery.....NOT!!!

Today was Ethan's Deflux Surgery. We arrived at the hospital at 6:15 am this morning. Here is Ethan in his cute Cars PJs in the waiting room of the hospital.

We talked with the anesthesiologist and nurses and went over all of Ethan's history and medical information. His Urologist came in and reminded us that this surgery only had a 90% chance of working and that once he was under anesthesia he would "go in" and look to see if his anatomy would be up for the procedure. Because of Ethan's hypotonia and position of his kidneys, ureters and bladder we knew that they may not be able to do the surgery.

This time was VERY hard to hand him over to the nurse because he "understood" what what was going on and is very much a Mommy's Boy right now. He was able to take his binky and blanket in with him.

The above picture was taken right before they took him in. He kicked, screamed and called for his Dadda all the way down the hall. I went into the bathroom and cried my eyes out. It was horrible. This is the 5th surgery and it NEVER gets any easier!

After an hour his Urologist came in and told us the news......he was not able to do the surgery. His anatomy would not allow it so our next step is the more invasive double ureter reimplantation. We are not sure when it will be but know that he will be in the hospital for about a week and will have a more difficult recovery than we had anticipated.

Here he is with his Dadda waking up from the procedure.

Thursday, February 18, 2010

I'm THAT Mom....

Yes, I'm THAT Mom, the Mom who allows her children to color giraffes purple, wrap presents, put away their own clothes (even though I can never find anything) and ahem....dress themselves. Here is my proof, just in case you don't believe me....

Notice the yellow raincoat, pink dress, black capri pants, brown shoes and Valentines Socks. Oh and how about that Macaroni necklace? Oh, she was SOOOOO proud of herself!

I Just can't say enough about these shoes and socks....

Monday, February 15, 2010

No apologies...

Today I was off for the Holiday but the kids all had to go to school to make up for a snow day and Chris had to work also.  Ethan stayed home with me and we had the most wonderful day, just the two of us.  I savored every moment of it. 

Vicki came by to do his Occupational Therapy and was very pleased at what a great job he is doing with scooting and standing with assistance.  He has started pushing up on one knee and is really getting good at lifting his belly up.

I still had not heard from the Doctor about Ethan's test results so I contacted Emory where the tests were sent and they told me that 2 of the 3 test results were back and had been sent over to our Genetic Doctor and they would not give me the results.  I had already left multiple messages with the Genetic Doctor's staff and I was getting very frustrated.  So.....I pulled out my notes from the NICU and found her cell number and gave her a little call.  I had to leave a message but she called me back within 30 minutes and the two tests that were back were both negative!!! Praise God!!! No Pompe's Disease and negative for Glycoprotein Storage Disease.  Now we are waiting on one more and should have back by the end of the week.  I make no apologies for pulling the Mom card today and would do it again all over....

I also let Ethan take both naps today in my arms while his sweet little chest moved up and down I stroked his beautiful blonde curls and prayed for him and told him how much I love him.  Again, I make no apologies for that either...sometimes a baby just needs his Mama's arms and a Mama always needs her baby in them!

Sunday, February 14, 2010

Valentines Greetings!

I have been a slacker on the blog scene but I have been VERY busy. Work is crazy right now, mutliple snow days which means no school and anxiously awaiting results from Ethan's genetic testing. He is being tested for Glycoprotein Storage Diseases. They told us it would take 7-10 days to get the results back from Emory and it has been 15. I am going nuts just wanting to know. All the other tests that we done we got the results back quicker than the usual wait but not this one. Which makes me over analyze....

Anyway, hope you had a wonderful Valentines Day! We did. Here are some pictures from our day....

Gracie has a Valentine and his name is Logan.  Logan has brought her a Valentine every year since she was 1!  This year he and his Mom came by and picked her up and took her to a Valentine's Dance at Logan's church.  She was just beaming and had a wonderful time!