Oh tonight was a great night. A gathering of all things Down Syndrome. Moms and dads with so much in common, in a single place, talking and meeting. It was so much fun. The day started rocky, as Jax woke up with major stridor. And then he would get mad and wouldn't be able to catch his breath. He would foam at the mouth as he tried to breathe. I called my ped, she was going to call ENT and see what he thought. As the day went on it got worse. It seemed like every time I got in the car he would fuss and then struggle for air and turn lovely shades of blue. I got stuck in between two cars at the bank and had to get out and calm him down. I ended up running him to the doctor as I tried to get ready for the BBQ. He vomited all over himself on the way up there, and then again on me and the doc. He hasn't vomited since his nissen was redone. Now he's not tolerating feeds at all, so tonight we are on pedialyte continous feeds. I'm guessing an upper GI will be next to check the nissen. If its not intact I don't know what we'll do, no more surgeries, he's to weak for that. Maybe a GJ tube. I don't know.
Anyway, aside from Jax showing us he's still in charge, we had so much fun.
Sweet little Justin checking Jax out. Oh and Jax is shirtless because he barfed on himself.
Momma's and kido's. Could there be a cuter bunch of kids?
Preslie, Justin and Ella being way to cute.
She's not mad I promise, just showing us her cheaser.
Sweet little Max. He reminds me so much of Jaxson when he was little.
I'm so sorry Jax is having such a rough time. You know when GI suggested a GJ button for V I was adamant I didn't want it. I didn't think it would help and I just flat out didn't want to do it. Now that he's had it for a full month now I'm so glad we decided to try it. He does require some hefty meds for motility, and he cannot take "full" feeds so he's basically hooked up 24/7, but for the first time in forever he's gaining weight and strength. I'm hoping we can eventually go back to g tube feeds but this had been a real lifesaver.
ReplyDeleteI hope he's feeling better soon, and I'm so happy you enjoyed the party.. wish we could have been there.
GREAT BBQ!!!!!!!!!!
ReplyDeleteThanks so much for putting this together. I love the support we're getting. We're still so new to this whole Ds thing. It was so nice to put a few more faces to the blog comments. (And Piper did NOT fall asleep on the way home, crazy girl!) My post will be up shortly :)
So much fun! Thank you so much for putting this together. Lily had a great time and wrote quite a bit about your turtles! Still trying to upload pictures and figure out this wordpress stuff, but hopefully tomorrow will have pictures up! Lily says she likes you. BBQ was so good, Jaxson's mom is so pretty, the dad was a good cooker. She is awesome. She is gorgeous, cute and pretty. And she's a good girl. Yeah it's 11:45 PM and Lily is still sitting by my side talking about tonight!
ReplyDeleteSo happy the bbq was such a great success and that you all had such an awesome time! Yes you are right - thats alot of cuteness for one couch - man all of the kids are absolutely gorgeous...
ReplyDeleteIm sorry to hear that Jax is not feeling well, I will continue to keep you in my prayers! I hope he feels much better today! Must of been a little scary with him turning all shades of blue! Big hugs to Jax and all the boys!
Megan and Keaton
Great pix of all the cute kids!
ReplyDeleteSorry to hear Jaxson had a rough day - I hope he is feeling better soon.
Great pictures! Sorry Jax wasn't doing well. He's still super cute though!
ReplyDeleteI'm so jealous ;o) that you all were together. I would have LOVED to meet you all.
Poor Jax! I'm glad he perked up for the party! That is entirely too much cuteness in one spot! When Addy was on O2 she was the only one in our DS group that was so she was quite an attention getter, it was kinda nice to see others! I know that may sound weird but I don't mean it that way!
ReplyDeleteOh my goodness, that big boy is such a fighter! I hope the days get easier and he stays a wonderful peach color, not blue!!
ReplyDeleteI looks like you all had a blast last night! We totally wish we lived closer!
Praying that Jax is feeling better soon! Poor little guy! Hopefully this is just a virus and it goes away soon!
ReplyDeleteI'm so happy for all of you, that you could get together and bond and support one another! But, I am VERY JEALOUS TOO! What a great opportunity! Someday I'm going to get my hands on Jax though! :)
Praying today goes better! LOVE and HUGS!!!
Thanks so much for hosting this fabulous BBQ! We had such a good time. I love getting together with everyone! I hope Jax gets feeling better soon. Sweet handsome love!!
ReplyDeleteI have more to say to you than I could ever write in a comment so I am planning on calling sometime today. But I just wanted to say a big THANK YOU!! We had soooooo much fun last night and I really didn't want to see it end. I needed many more hours of visiting but my husband MADE me leave (probably lucky for you or I would still be there). Hope to talk to you soon and thanks again for hosting this amazing group of families.
ReplyDeleteThat is entirely too much cuteness! Look at all those adorable little faces. :)
ReplyDeleteI am a few days behind reading blogs, so I just read your updates. I wish you could just call Boston and get them to dang answer you already! Seriously, a kid's health is hanging on their answer. It's ridiculous. I'm sorry Lacey.
Let me know what days you are free when you are here, if you are. Where are you staying? My email is waffle1313@gmail.com. I definately want to meet up with you!!
Thanks so much for inviting us! It was exactly what I needed after a rough day at the hospital Sunday. I seriously can't wait for Kaelyn to meet all her new friends, such cute kids and such amazing families! Thank you thank you.
ReplyDeleteI hope that Jax starts tolerating his feeds better! It must be so horrible to throw up all the time!
ReplyDeleteI'm so glad that you all had a lovely time! So wish that I could have been there!! BUMMER:)
ReplyDeletePoor Jax, that's too funny though, showing you who's still in charge;) Sure hope that he's feeling much better today! Poor Baby!!!
{{HUGS}}
I'm so sorry I missed this. Parker has been sick and Reed has been working two jobs this summer. N.U.T.S
ReplyDeleteMaybe next time?
that does look like a fantastic party! How fun!
ReplyDeleteOh Jax - it's never easy. Prayers for you sweet one.
ReplyDeleteThat looks like a wonderful gathering. Wish we had been there!