So on to my Bubby! February 27 is the date for his surgeries. They have agreed to both at the same time, to prevent 2 different sedations. He will have the scope for his tonsils and adenoids, first. They will decide if they need to come out. If they do....out they come. Then they will continue on, with his malrotation surgery. They can do this laproscopically, as long as there are no issues. They will take his appendix out as well, because normally they are on the wrong side when they have this and they don't want that to be an issue down the road, with not being able to diagnose it. I have had a lot of people ask what malrotation is. I will give you the very basic pre school version. Basically his intestines are not where they should be. It happens very early on when they are in the womb. Patricks are pushed over to the side a little. They want to kind of pin them and create some scar tissue to prevent them from moving or flipping. This could cause the intestines to die off or obstruct, which causes major issues. Its actually not that uncommon to be born with it, and they usually catch it when your a baby and fix it. A lot of people live their whole lives not knowing they have it. But in the case of a child with PKS or another disability, he can't tell us when he is cramping, in pain, etc. So it usually gets to a dangerous point before we know something is wrong. Thats why they want to fix it.
Whew....too much information! I am not the queasy type at all. But when the doctor was explaining this....I wanted to vomit. I think its because its my own child. Yes, we are nervous, as any parent would be. But we are glad that we are going to get things taken care of. We truly don't know how we got this far without a surgery. We feel lucky. But its time to get things tuned up for our boy! He's always had some issues with his tummy, so I am hoping this will help. I am sure I will be a mess the day of the surgery, as we won't know what to expect and the anesthesia freaks me out. But he has some of the best doctors taking care of him, so we go with it. Thoughts and prayers requested :)
The one thing I am grateful for in all of the things that Patrick has to go through, is he doesn't have the ability to worry about things like we do. We spend so much time worried about whats going to happen. He doesn't. He just goes with the flow. If something hurts or upsets him, he yells at us, until we fix it, but he doesn't sit around and dwell on things like we do. He goes about his business laughing at random things and playing with his toys. This is a quality, that I wish I had. I am glad right now, that we are the ones worried for him, he doesn't have to know that he is having the surgery. He can enjoy himself and do his thing, up until that day. We will worry for him.
He is doing great otherwise!! Went for a visit with audiology and his hearing is good. Don't have to go back for a year!! YAY!! Legs are stronger and he is interacting with people a lot. Just a happy boy in general :) We go back for a re-evaluation in a week or so to get this boy a safe bed! Fingers crossed that we will. Now that he has a sleep apnea diagnosis, it may make it easier. We are still fighting!!!
Look Mom, I am standing :)
Please excuse my "snow shoveling outfit"
Loves his new toy :)
Sooooo.....I have this super cute video of him laughing and singing (well, screeching a little), to his favorite song. He loooooooovvvvvveees the Rocky Raccoon song by The Beatles. YouTube, will not let me share it, because of copyright issues. UUUUUUGGGHHHHH!!!! This crap gets on my nerves. I don't want to make money.....but anyways.....if I can figure out a way to share it on here, I will ASAP!!
Watching the Ipad
Playing at Open Gym
Not the proper way to put your child in a carseat
Avery and Jameson are both great as well. Jameson is keeping me on my toes for sure!! Avery is doing great in softball right now. Really improving and enjoying it!! Tim and I are good too....I think....is that Tim guy my husband? Just kidding....we have learned to sacrifice sleep to sit down with each other every night after the rugrats are in bed and watch some TV(we are zombies by Friday). We are catching up on Breaking Bad and Scandal. One for each of us. They are addicting!!! Although, sometimes I need a "break" from Breaking Bad (haha), it is INTENSE. 3 nights in a row, and I am in the need for something funny. And please don't tell us what happens in the end, Tim would be depressed I think:)
Also.....We will be opening up the Bubby Shirt sales again next week for anyone who missed it!! We had a lot of people ask :) I will send the link out. We can't thank you enough for all of your love and support for Bubby and all of us!!
Throwback Thursday-
Avery with Patrick
Avery with Jameson
I just love these 2 pictures and seeing how much they have all changed :)
Stay Warm
xo
