By SMA Awareness Ribbon
Devastated
and heartbroken over the loss of a one of our SMA moms/mums from the
UK. Please keep the Durkin-O'Brien family in your prayers as they adjust
and cope during this difficult time. Julianne is an inspiration as a
strong and courageous mum who traveled to the USA to get the
SMA care she felt her son Conor deserved. She has been an advocate for
so many other families showing them the way through this difficult life
with an SMA child. RIP Julianne! Forever in our hearts! #SMAawareness
#spinalmuscularatrophy #inspiration #SMAstrong #courageous #pioneer
#advocate
And, there are kids that are ill and in the hospital fighting to get well and get home. This is an every day occurrence in the SMA world. Not a day goes by that one of our kids isn't fighting in a hospital somewhere. Today, one of our friends is recovering from trach surgery and the family is having to learn a whole new way of caring for their child.
Our day was quiet. Boys slept in pretty late. Colin woke earlier but was quiet so that Casey was able to sleep in until 11:00!! Gene slept in, too. I took advantage of the quiet to do my puttering and some dusting in the yellow room.
Jaxon was so stinky that we couldn't stand it anymore. Gene ran out to get some oatmeal dog shampoo because besides being stinky, Jaxon has been itchy. So while the boys watched a movie we showered Jaxon in the boys' bathroom. I hope that he feels better--he's certainly less stinky. I washed his 4, yes, FOUR dog blankets that he uses in the crate downstairs and the dog bed cover from the crate upstairs. I put the inside of the bed outside for some fresh air. Wiped out lots of hair and did a tub clean on the washer.
Nancy came at 2. Got the boys washed up and dressed. Both boys wore their new shirts from Aunt Chris. It was pretty muggy but not excruciatingly so. Casey got up in his chair and watched a movie and surfed the web. Colin headed out to his spot in the living room and watched some of his shows. AC played some Where the Wild Things Are wii with the boys (of course I had to help). I Magic Sponged the cabinets in the kitchen and watched season 2, episode 1 of American Horror Story. Not feeling it--probably won't finish. Maybe I'll try season 3. Then Nancy played some Poptropica with Colin while Casey surfed and listened to music. He's pretty bummed that he can't change channels right now since he's using Colin's DynaVox....need to work on that.
Gene went out and visited a friend and hit the grocery store. He made dinner when he got back--not bad; pasta wheels with some kind of sauce with veggies, mixed veggies and garlic knots. Julia had made a "fake" cheese cake yesterday so I had that for dessert--although dessert happened before dinner tonight, ha ha.
Oh, when cleaning up the yellow room, I started going through some disks with old pictures. I posted some cuties on Facebook and will post some here.
Not much else happened. Part of my heart is in the UK with Julianne's family, and with many of my other SMA families that are struggling right now, or healing after surgery. I'm glad I have a big heart because there are a lot of people out there that I want/need to share it with.
Random old pictures:
Random post from the past:
April 26th, 2006
Colin is fine. Let me start by saying that. I was upstairs trying to rest for a bit. Casey, Colin and Nancy were downstairs hanging out. Gene was in the garage. Nancy yelled for me that Colin was doing something funny. I was down in a flash. He was already looking pretty bad. She was suctioning and in/exing. At one point I saw 6 for SAT and 30 for HR. We were all doing stuff; oxygen, suction, In/exing, etc. He just didn’t seem to be responding so I started my major freak out. Sometimes I just lose it. I was yelling, “do something, do something”. Really helpful, I know! So I had Nancy call 911. They kept her on the phone so Gene and I continued doing stuff. Gene blew in his mouth and finally moved the plug. Then we got some more goop out and then put his bipap on. He said he felt better. He was quiet and pale, but now he’s pinking up and talking a bit more. He’s totally into his Beauty and the Beast. Casey was scared. He was very quiet. He’s actually being quiet watching Beauty and the Beast with Colin (which he normally dislikes).
So, that’s it. I’ve talked to the nurse at our pulmonologist. She’s going to talk to Dr. Lahiri just to see if he thinks he needs to be seen or get an x-ray, etc.
Sorry I’ve been absent on here. Things have really been FINE, just busy. Of course, I’m reading emails and sending prayers for everyone, especially Zoe and Aleena.
OFF TO THE ER (Wednesday; a bit later):
Just to get Colin checked out. We spoke with Dr. Lahiri's nurse and they wanted us to come in.
HOME SAFE AND SOUND AND FINE (about 6:30 PM)
We’re home.
Colin was a good boy. He fell asleep in the van before we even got down to the end of our road. He woke up happy at the hospital (on bipap, of course). They got us RIGHT in. Our favorite PICU doc was there to meet us. We took Colin off of bipap for a bit and he was doing fine—100% SATS and low heart rate. His lungs sounded good. They took a chest X-ray and they didn’t see any infiltrate. We’re going to watch him for the next 24 hours for any aspiration, but I feel in my gut that he’s fine. The nurses were nice and he babbled to them. They brought him a TV/VCR to watch. They did blood work, which is never fun. Our metabolic panel clotted a couple of weeks ago at our pulmonologist appointment so they re-did that and took some for a blood gas. A Child Life Specialist came and brought him Monty, the moose stuffed animal. Monty is the hospital mascot. She also read a sound story book to him while they drew blood. Our pulmonologist was there, too, so we had lots of consulting and the consensus was that he was fine. BAD episode, but he bounces back quickly!!
Casey talked to us on the phone as he was kind of nervous. After that he had fun playing computer with Nancy H and Aunt Chris.
And, we had a nice surprise waiting for us! We got a box FULL of pillows from Kyle Gundy! They are awesome!
Thanks for the thoughts and prayers!
No comments:
Post a Comment