Well, we thought we would try to set Caleb up with a big boy bed as we found a great deal on a box spring and mattress for his room and couldn't pass it up.
Well we set up the bed, and well as for now it is a 'no go'. We realized that due to his delays Caleb doesn't understand that he could fall out of bed. So we are looking into get another high side rail and putting a rail on both sides and the end of the bed. Thanks Jodi for the bed rail, it works! We just need to get one more and then we will try again and see if it is safe. Another downfall of the big boy bed situation is that we decided to get Caleb's favorite thing, Sponge Bob, as the comforter hoping to make it a 'smoother' transition. Well, he is scared of it. He wont lay down on it or really touch it, as you can see from the video. Not sure if it his sensory issues, regular fear,or a combo of the two so I am trying to get him more comfortable with the comforter too. So for now we have his crib and his big boy bed in his room until we can transition him to his big boy bed permanently.
Caleb's Physical Therapist came Thursday and we discussed the fact that Caleb is still not walking. Let me remind everyone, that Caleb didn't sit up on his own until two days before his second birthday. Brian and I are very aware that there is the possibility that Caleb may have equilibrium issues due to CHARGE, however, we are not convinced that he may not be walking yet due to his delays. Either way, whatever we can do to help Caleb progress in regards to walking is another priority. So we discussed the possibility of a pediatric walker. His PT is going to do some research and will let us know this week when he returns. I don't think the walker is a bad idea as this may give Caleb some independence as he really does not like at all to walk supported (while we hold his hands). So maybe the walker would be a welcoming thing to Caleb.
I also just recently got the video from the news story from Christmas that they did on Caleb. I will be posting that soon, so check back!
Again, thank you for checking in on Caleb!!
God Bless you all!!
God Bless Caleb!!
Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
6 comments:
Such a cute video...the bed looks awesome and I'm sure he'll come around to loving it!! You guys look great...i miss you and love you and CAN'T WAIT to be able to see you guys this summer!!!!! I've got my fingers crossed!!!
So awesome to get to watch you all interacting on video!! I love it!! The room looks so cute and will only take some time to get him used to it. So exciting!! Thanks for sharing with us. I can't wait to see the news video since I never got to see it. Love you guys!! Miss you!
I just love his Spongebob bed. It is adorable. Christopher would love it too! Caleb and Christopher definitely have something in common and that is Spongebob! That is the only character Christopher just loves!! Good luck in walking... it will come in time... Christopher started taking off around the age of 3 1/2 or 4 and really doing well by 5. The walker really helped him. I wish we lived in the same area I would give you Christopher's walker :O) Hope ya'll are having a great weekend!
This is adorable! As the mom of another CHARGEr, I can appreciate Celeb's aversion to the bed (for now). I'm sure he will come around in time. But for now I find it so cute watching him avoid touching it.
We picked a toddler bed just of for the reason of Eva might falling out and she is so tiny she will fit in her little bed for a long time.
But Caleb's new bed is ADORABLE! We love Spongebob also, as for the walker do you think a gate trainer would work for Caleb. He would feel supported but at the same time able to walk, once he feels comfortable enough you can take the supports off and he can use it as a walker. We have one for Eva and it comes in really cool colors..hee hee!
Good luck with everything,
Crystal and Eva
WOW! WOW! WOW! He is getting so big and doing really great! I love how excited he got when he saw "Bob Bob"...wow! And that sweet lil' giggle and big smile...sooooooo cute!
Congratulations on all his progress guys...you are doing great. I know there are many frustrating days (trust me, I know!), but let me tell you how impressed and amazed I am at how far he has come! WOW!
As for the walker, Max LOVED his walker! He had the strength but not the balance to walk...so this was a perfect solution. Eventually he only wanted to hold my hand and NOW he is walking on his own. IT DOES HAPPEN! :)
Love you guys...Amy and Mighty Max
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