He stayed at Papa and Grandma's house on Friday night so mommy and daddy could get some much needed sleep! He also slept great last night!! His fever spiked yesterday to 102 in the afternoon. Hoping that it's med related like everyone has said and that (fingers crossed) it goes away this week when he is finally off his Methadone and Ativan. Wednesday, Colin gets his J-tube replaced to a mickey J which means no big tube hanging off him!! We are hoping to do the entire procedure with just a big dose of Ativan!! Oh yea...and he doesn't need to wear the oxygen during the day anymore......
Sunday, April 27, 2008
Buffalo Wild Child......
He stayed at Papa and Grandma's house on Friday night so mommy and daddy could get some much needed sleep! He also slept great last night!! His fever spiked yesterday to 102 in the afternoon. Hoping that it's med related like everyone has said and that (fingers crossed) it goes away this week when he is finally off his Methadone and Ativan. Wednesday, Colin gets his J-tube replaced to a mickey J which means no big tube hanging off him!! We are hoping to do the entire procedure with just a big dose of Ativan!! Oh yea...and he doesn't need to wear the oxygen during the day anymore......
Friday, April 25, 2008
Why We Avoid Taking Colin to the Pediatrician...
Of course-Upstate ER!! AND...after 3 needle sticks and squeezing Colin's limbs for every last bit of blood all of the results came back.....NEGATIVE!! Of course they did. Although, they did show he was a little dry which Tim and I already knew. We had already gone down on his diuretics a few days ago. We noticed that he wasn't sweating or crying any tears but, we were afraid to give him too much fluid because then he blows up. Our nurse told us they did not know what was causing the fevers but, they do know that Colin is really cute (of course we already knew that!) We didn't get home until 11:30 last night and we are all a little cranky. Colin got Pedialyte all night and no diurectis and he was drenched with sweat this morning and slept really good and his temp this morning was NORMAL! We go to see Dr. K at 1:00 to figure out what the new plan is. Colin did get lots of visitors-all of the residents that know Colin all too well. Colleen the Child Life Specialist got Colin a Wiggles video!! Even the admitting clerk came in to our room to say hi and she remembers us from our Nov and Dec ER visits!! It is not a good thing to have the local ER staff know your child!! We were happy to go home but, would have liked to see our favorite 4A nurses!!
One more thing-Colin's sats were 94 when we got to the ER so, they didn't hook him up to any monitors or O2. That was a first!!
I know everyone continues to pray for Colin but, he needs some more. We'll keep everyone posted on how he is doing.
Saturday, April 19, 2008
What a day for a walk.......
As you can see when Colin arrived he certainly was the hit of the party as many of the people had been following here on the blog while we were in Boston....And of course our family came in to help push Colin along the path.......
(From back left to right: Uncle Alex, Aunt Jamee (sunglasses), Papa. Middle Row: Grandma, Tim (Dad), Nanna, and Grandpa.....Front row - Melanie (Mom) and of course Colin)
So the walk started and Colin stayed nice and calm soaking in the 85 degree day with his foot up on the dash.......
And when the walk was over and he made all 3 miles....He let out a......BIG SMILE
Thanks to all who supported Colin at The Hartford especially Sue A, Cyndee S, Cindy M, and Barb V and all of those who donated and/or walked for Colin. PS-He did all of this with a 102 degree temp!! Yes-he still has those temps and they were spiking the past few days. Dr. K doesn't even know why!!!
Wednesday, April 16, 2008
Blue Suede Shoes?
Standing on top of the world.....for a little while....
(bonus question..who sings the song with those lyrics...)
Are those Colin's shoes or Teddy Ruxpins?
Tuesday, April 15, 2008
I like pudding......
Colin acting like a typical man.....taking control of the remote.....
I think he is saying his prayers ......
Sunday, April 13, 2008
Sunday's Best....
PS - Colin slept through the entire night last night. From 7:15 p.m. - 6:30 a.m. Waahoooo. Colin is also jacked up to watch the Masters today in High Def.... Colin is rooting for Trevor Immelman because just like Colin he also had surgery earlier this year to remove a tumor.....Although.. Daddy is rooting for Tiger......
Saturday, April 12, 2008
Growth Milestone...
Please say a prayer for Elijah...he's been sick and is supposed to have heart surgery on Tuesday.
Thursday, April 10, 2008
Thursday Evening Update.....
Colin enjoying his Lorna......
Tuesday, April 08, 2008
Pictures from today..........
Check it out...the red hair is making a comeback....It just needed a little sunlight.....
Colin having fun standing....well sort of...he leaned against the couch a bit.....As you can see mommy is scared because she wouldn't move her hand......
We had steak and baked potatoes tonight and we decided to give Colin some mashed up baked potato with a little milk and sour cream......Needless to say..he didn't like it very much and wore it instead of eating it.....
Yea there was definitely a bath after this mess.....
We also took Colin to Wegmans today for some groceries.. He LOVED it.. He smiled the whole time...Everyone thought he was so cute...Even a 79 year old lady who told Colin she knew how he felt because she also wears oxygen at home......
Colin also had speech therapy today with Kendall. She was very impressed that he was drinking out of a sippy cup and straw....
Sunday, April 06, 2008
Discovering Falling Water
Friday, April 04, 2008
Visit with Dr. K
We're having some issues with Colin's therapists. Colin's PT is going out on maternity leave (I am so sad because she was fantastic) and we have to switch OT's because I cannot take Colin to the center for his therapy. I was told by our Service Coordinator that the list for PT's/OT's is very short and that they don't just want to put anyone with Colin because of his complex medical issues. (Heather Milligan are you listening?? Would you come out of retirement for Colin?? Even if it is only for a little while before you move?? Just teasing-Jack needs his mama!!) The good news is that his Speech Therapist is great and she will be working with us to get Colin eating and talking soon.
Keep those prayers for Colin coming....(and for his mama to get some patience...)
Wednesday, April 02, 2008
Smiles All Around.....
Colin and his dog Wags....(I hope that is not copywrited by The Wiggles)