Friday, June 8, 2012
Les and I are relieving each other every night at the hospital now-tonight is my night to relax. I caught up with some friends, watched a few DVR shows, saw all the FB comments/messages for my family:) & actually took a shower!!! Although this is a tough time, I am determined to keep living in the moment. (If I didn't -I'd be to depressed to function for all my kids). I will not ask the what -if's, but I'm going to stay on top of my boys needs-ALL 3 of them- & I can now, not being in school;) We have had a wonderful out pour wanting to help us. It's always tough to think about what we really need at the moment, but we will accept help. We love visitors @PCH (but need to contact us ahead of time depending on Ry's day), If you're up to doing something fun w/Ty & Noah--that would be wonderful (our AWESOME friends the Clayton's have kept them entertained at their house since Monday -& they are still there not wanting to come home!-although I'm glad to have their minds off of Ryder's illness now) Les and I haven't spent time together- so a date night w/babysitting would be amazing! We truly appreciate anything and everything--cards, FB comments, calls, visits--whatever. It makes us feel loved:) We will need a lot of financial support once again or if anyone has contacts to help us out with a wheelchair lift for our Pilot or any specialized swing/equipment/toys for Ry to gain back some strength. Special talents like photography (for Ry & family), swimming lessons for all the boys--anything to help through the summer would be appreciated. I just wanted to say thanks to everyone's offers & let you know we DO APPRECIATE your concern & love:)
Ryder's surgery went well (PICC Line placed). He's sleeping off the anesthesia now. He has his next test (another barium swallow) at 2:30. Results from one of his test yesterday show he is only emptying 3% of what he consumes- which is horrible news. I'm not sure he'll ever be able to eat/drink by mouth again (he wants to soooo bad & it’s hard to explain why he can't to a 2 yr old especially when his brothers & family can eat :( He's in the PICU (ICU for pediatrics). At first we thought it was because it was the 1st room available, but are learning this is where he needs to be. The lipids that are running through his veins are horribly hard on his veins. They were changing IV sites 1-2 times a day and the site infiltrated a few times. Luckily, it was caught early enough. The lipids pool around under the skin and it is very painful. It burns and causes necrosis (killing the cells/skin). He's starting to wake up now- so will fill you in more later.