Thursday, March 6, 2014

One year anniversary

A very tired little man after school today
Since Brayden had his port removal surgery I am excited to report we have only had normal kid problems! His port site looks great and he is back to taking regular baths. He is getting over a cold, and finally got some oral medication to help his diaper rash, so from a health perspective he is doing awesome!
 
 
Sunday evening we attempted to convert his toddler bed because he is making me increasingly nervous leaning over the crib rails to try and reach whatever he tossed out before going to sleep. Sunday night he did awesome, went to sleep with zero fussing and slept until 0730. Unfortunately he did not do so well Monday for his nap. I saw him stand up on the baby monitor and I tried to race to his room and save him before he fell out but as I reached for his door knob I heard the thud. Thankfully he sustained no injuries and just scared himself. His crib was reassembled immediately and we will try again in a couple months.
 
In other news, Brayden had his annual first steps (early intervention therapists that see us at home)meeting. During this meeting we looked at the goals we set 6 months ago, and I am pleased to say that most of them were met! We developed new goals for the next six months and discussed how he would achieve those new goals. It was decided (after much pushing from this momma) that Brayden will be moving out of his one hour group therapy class into a two hour class. He loves going to class and has really started thriving since starting at Marian Hope. He will also be ditching his current braces for some less restrictive ones. He is close to outgrowing his current braces and their is some question about whether his current braces are holding him back by not allowing him enough movement. I was hoping for just some shoe inserts but he still needs more support that that. Here is his current style:
 
DAFO 4 Softy
 
Here is the less restrictive style he will be getting soon:
SMO
 
At first glance they look similar, but the new braces will allow more movement because they do not cover the entire sole of the foot. Hopefully these new braces will give him more movement which will allow him to stand on his toes and maybe learn to jump! They look a lot less bulky so I am hoping shoes will be easier to find and will be less expensive.
 
All in all, Mr Brayden is definitely moving in the right direction and he is gaining momentum. His language is exploding right now and he is able to follow so many more simple directions! His physical development has stalled a bit and I am hoping the new braces will help with some.
  

 Getting ready for port insertion a year ago.....
Yesterday was Brayden's one year anniversary since receiving his official cancer diagnosis. When I look at the picture above I am amazed at how far Brayden has come! Its hard to believe an entire year has passed since we met Dr G and the wonderful staff at the CMH Oncology clinic. When I really stop and think back to that day I still get pretty emotional. That day certainly went down in the record books for one of the hardest days I have ever lived through. That day I was forced to realize and accept one the worst fears a parent could ever have and I wondered how Brayden's diagnosis would change our lives because there was no denying the huge impact it would have. There is no doubt that our lives are forever changed by the events of the last year, but I feel like we have found a good balance between having fun and being responsible. My current fears are different than the fears I had a year ago, and the things that seemed so important a year ago hardly matter now. I don't worry as much as I used to about how long we will have Brayden with us because I know that every day that we have with Brayden is sort of a miracle in itself and I am grateful for every day we get to spend with him. After all, the amount of time we will have with Brayden isn't really up to us and while it was difficult, I have accepted that. Brayden gives me more strength than I could have ever imagined having when this journey began, and his smiles and giggles are infectious and sometimes they are just what I need. He is such a happy kid even after all the things he has been through! From the bottom of our hearts, thank you to everyone who has supported us along the way and prayed for Brayden over the last year!
 
 
 

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