Gavin loves playing with his tubing from his feeding tube! He is great at finding it, especially when we are trying to change his diaper! Since Gavin is hooked up to his feeding pump a lot of the day, we just keep the connecting tube hooked up to his G-tube button, even when he's not "eating." We tuck the end into the velcro tape on his diaper and he knows it's there! As soon as he hears that velcro sound of the diaper being opened, his little hand is right there to grab it! And let me tell you, it takes a lot of skill to keep him from pulling it hard and right out of his button while trying to clean a messy diaper! It's like he has octopus arms!
Another favorite toy is something that his physical therapist brought over one day. Here are some pictures of him playing with it.
Doesn't he look like he loves it?! It's actually a piece of fabric that she bought at a craft store. It is silver and black and feels kind of soft and silky. I think that he likes the way that it feels, plus since it's silver, it may be easier for him to see? Gavin has a bar that we hang his toys on, that we put in front of him while he sits in his chair. He always goes for this fabric first!
I think it's so funny that these are his favorite things to play with! I suppose this is true with most kids. You buy them tons of toys and they want to play with the box or something! I guess this makes Gavin quite normal?! Although, we all know that Gavin is far from normal! I may be biased, but I believe that he is WAY better than normal!
"A man's heart plans his way, but the Lord directs his steps." Proverbs 16:9
13 comments:
That's what I think when I see some of Gavin's pictures: He's had his challenges, and maybe he's not catching on as quickly as the average kid--but he's definitely a kid, and a boy kid at that! (I like to think that he's just stretching his childhood out and making it last longer, which is pretty smart to me!)
I found you through "My name is Sarah" and was immediately drawn to Gavins story as it is very,very similar to our little Zoey.She too was born with Down syndrome,a rare blood disorder,a stroke suffered in -utero and suffers from a major seizure disorder.She is also currently fighting AML.She too is a miracle and a fighter and a believe a kindred spirit to little Gavin.He is precious and I thank you for sharing his story.There was a time when I felt so alone,even within the Down syndrome community and altough I would rather no child have to go through all that these little ones have endured,there is something about gathering strength from others traveling similar roads.Take care and if you stop by you will see I am a bit of a quote addict also!
I wanted to also mention that my 17 year old posted the lyrics to "Praise You in the Storm",that we have taped to the head of Zoey's hospital crib.Our gentle reminder when we need it most.
Hi I got chills because we have so much in common. I had a really hard time getting into downs functions because he is so far behind typical downs kids that it had me so depressed. And how funny that we both have 4 boys. Thats great. Its nice to meet you. Lacey and Jax
Addysen's tube is an all time favorite too. When she was on O2 we couldn't keep that from her either so we kept some for fun and she LOVES them! With her new Bard button she can pull her tube right out, it doesn't lock like the Mickey so we have to keep a close eye or it's gone and formula is everywhere!
Gavin is so sweet, and no scensory issues witht hat silver cloth! Great!
Love your smile Gavin!
TJ likes that toy too! He has to have 60ml syringe, mic-key extention, baby bottle(s) and cap(s), or he is whining for them. It's too funny!
I'd go for that fabric too, it's pretty cool!
Have a nice weekend!
TJ likes that toy too! He has to have 60ml syringe, mic-key extention, baby bottle(s) and cap(s), or he is whining for them. It's too funny!
I'd go for that fabric too, it's pretty cool!
Have a nice weekend!
Would it be alright if I added Gavin to Zoey's friends list?And yes .... fabric is an all time favorite of Zoey's also!
The dang feeding tube is my Peanut's favorite toy as well! That and the black Zevex backpack, because it has so many fun zipper pulls to play with. :)
Would it help to give Gavin a spare piece of tubing (disconnected from his button) to hold while you are changing him? You could leave it on the changing table.
I bet you could find other materials with similar feel, and give him a whole assortment of cloths to reach for. Yea, just like other kids.
Barbara
Wow! Gavin is looking so grown up in that last photo!
Barbara always has such brilliant ideas for our kids. I would hire her for Abigail, but the weekly travel expenses Texas - France are a little high.
I love the way Gavin has taken to those toys! You can see his happiness and contentment sprawled across his lovely little face!
I LOVE it!!!
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