Pass it on...

I found this on youtube. I don't know the author, but it hits home! I want to pass it around the world until EVERYONE knows about CHD's!




Here is a direct link

http://www.youtube.com/watch?v=lHbvqglO1As

Home Sweet Home

Home Sweet Home...We arrived in KY yesterday. My husband and I were both born and raised here. Me in Elizabethtown and him in Bardstown. So far we have seen one of my sisters, her husband and their two kids, and from Robs side, we saw a few cousins, and his aunt. Today is his family's reunion. I am excited to go. I have never been (mostly because we live out of state). I don't know what all we have planned for the week. Family court, the zoo, a get together with my family this Friday...this is vacation, so I want to just veg and let it happen.

Tommy barely slept on the way, and refused to wear his HME (it goes over his trach and keeps him from getting too dry). Now all of the kids are sacked out on one bed, Rob in the other, and me on the computer! They are gonna hate me when I have to wake them up.

I really miss not living here. I have such mixed feelings. If we move back, Tommy's health would definitely make a turn for the worse. The hospitals here are nowhere near as competent as MUSC. So for now, we will visit when we can, and maybe in a few years, when he overcomes more of his little quirks, we can think about moving back. Of course, it is summer now. We might feel differently once the snow starts to fall! After living in Charleston for 6 snowless years, I don't know if I would be able to tolerate the shoveling, the black ice, and all the lovely stuff to go with it!

I will update on our trip when I can!

Big Bad Swallowing Baby!

Short and sweet: the swallow study proved that Tommy CAN swallow!

"Cricopharyngeal dysfunction is defined as the delayed or incomplete relaxation of the cricopharyngeal muscle during swallowing. This may cause dysphagia and aspiration, affecting the quality of life."

That is a quote from a medical journal. He's defied the odds to do what you and I can do naturally. He has to work a little harder at it, but in the end, the food goes down pretty easily once he figured out what was expected of him. I feel like standing on top of MUSC and blowing great big raspberries at all of the writers of these medical journals. Time and time again, Tommy has turned the medical world on its ear. He grows, he thrives, he laughs! Of all of his accomplishments and milestones, his smile is my favorite. Second is swallowing!

I don't know if he will ever get "nutrition" from swallowing, but he will get enjoyment! That tough little cookie deserves to enjoy something in this life. He goes through boring and sometimes painful therapies all week long. He has had procedures and surgeries. I can't wait to hear what his speech therapist lays out for us this week! He deserves some happy, enjoyable times in his little life!

"Where's My Chicken????"

Some things are meant to NEVER be said, but as parents, we say things we had never planned on vocalizing, ever! for instance, tonight I find myself in the kitchen yelling "Where is my chicken??" Yes, my chicken. See, Brandon has a bad little habit of taking random things that don't belong to him and hiding them in his room. It can be one of Tommy's sensory toys, a shoe, one of Rob's tools, and sometimes food. Today, it was a whole chicken! I had taken it out of the freezer, placed it on the kitchen table and then took Tommy to my room to get him ready for bed and settled for the night. The whole process takes about 30-45 minutes. When I get back to the kitchen, the chicken is missing...hence, my yelling. Brandon comes into the living room and gives me a sideways smile. With a stern look, I ask him what he did with my chicken. He said, "In my room..." Sure enough, there's the chicken on the top bunk in his room. I am still trying to figure out how he got it up there. He barely ways 35 pounds!

Since we are going to KY next weekend, I am hoping he gets a weeks worth of spoiling from everyone. We will be getting back on his birthday. I am trying to convince him to have a Hotwheels cake. Or anything other than HIS idea! He wants a potty cake. Yep, he wants a little toilet on his cake. He might just have to have a regular cake, with whatever I want on the top, and then I will make him a little cake of his own and find a dollhouse potty for him. I am hoping with the positive attention he will be getting, he will settle down with the taking things. I really think he is doing it because Tommy gets so much attention with the therapists coming by twice a week, then since I have to suction Tommy so frequently, it looks like I am spending time with Tommy more than Brandon.

I hate it that Brandon feels like he has to take things to get noticed. He will be 4 on June 4th, so I am hoping he is going to grow out of all of this very soon.

We've been having a great week. Rob is getting a ton of overtime, Tommy is doing fantastic. We had Tommy's cardiac appointment today. Dr. McQuinn only wanted his oxygen saturation levels. Last month, they were in the low 70's and he was coughing. Today he was back up to 84%. We also go his heart cath scheduled. It is going to be on June 25th. Tomorrow we have PT. Tommy had his G tube replaced today (routine) so I am excited to see if he will do some tummy time. I'm not expecting anything, but it would be nice to see if this helps him.

We are passively working on Brandon's potty training. We let him go if he asks to go, but we don't make him unless he wants to take a bath. Matthew is having withdrawals from his gameboy. I have to keep it put away and let him take it out for special occasions. I have to hide it,haha. We ended up installing a camera in their room. Too many fights and they are blaming each other. Plus Brandon has a bad habit of taking things that aren't his and hiding the evidence in his room. I love having a hubby that works for an electronics company. Brandon is enjoying shaking his butt at the camera. (insert eye rolling here)

Well, now that the cat is out of the bag with my family, I can share that we are taking Tommy on his first road trip in a couple of weeks to meet our families. Outside of my mother in law, nobody on either side of our families has met him. Today's appointment confirmed we are cleared to leave town! We have his swallowing study and see his ENT on Monday. Other than that, we are just hanging out waiting for our trip. We are going to Kentucky. I am especially excited for my mom to meet him.

Bug Spatchu-wah!

Did you ever just want to capture a moment or a phase coming out of your little one? This is one of those moments... Brandon just came racing down the hallway with a flyswatter. Apparently, he has seen a bug of some sort...except he is yelling as he runs "I gotta get the bug spatchu-wah!" over and over. I guess we now have a "bug spatula" in our home. Nifty device!

Funny For Mother's Day!

Happy Mother's Day!
I saw this video on a message board I belong to. Funny, funny stuff!
It cheered me up because I had a pretty lousy mother's day. Not a big deal I guess, just the fact that it was just an ordinary day around here. I whined about not getting special treatment, but it got me nowhere, haha. This video made me think of Matthew and Brandon in 15 years!