The last few years she had suffered from dementia, which slowly impaired her brain function. With Braylon's Dandy-Walker, he too suffers from his brain not functioning properly. However, this past month we are seeing more and more improvement. I think he gained an extra special guardian angel to help him progress!! My grandmother also smiled all the time. She was as happy as can be, just like our 'lil man. Coincidence...I will let you decide!
When I said a lot has been going on, I was not exaggerating. For starters, Braylon was fitted for a stander...for those of you scratching your head, it is exactly what you are thinking. It is a piece of equipment that straps him in to stand upright with a tray and all!! (Did I mention it has wheels???) I had a harder time dealing with it than he did. He got in it and loved it, while I had to fight back a tear or two. I didn't know how difficult it would be to see him placed in a piece of medical equipment like that. We moved right on though; how could you not with just a glimpse of his excitement?
The following week we visited Shriner's Hospital to see what they could do to help. It was a great experience! We meet with a team of doctors, nurses, therapist and so on. We were there for over 4 hours, but it was worth it. They talked to us about everything and even helped us get some things ordered to hopefully make our lives a little easier. They even gave us some arm and leg immobilizers for free!! They also fit Braylon for his first set of ankle braces. We go back to pick those up next week and we are hoping they really help with his stability.
Next up we made a trip to New Orleans to meet with the geneticist. We are trying to determine if the Dandy-Walker is genetic or just one of those fluke things. Although the doctor said he did not feel as though it is genetic, we are still doing blood work to confirm. We always wanted two children, but I just don't know how we could handle another one with the same medical condition. There are a lot of days that just kick my behind! Of course on the way home we had to stop and meet Mike the Tiger at LSU. Braylon wouldn't take his eyes off of him.
We were referred to Families Helping Families by several people. I met with a wonderful lady whose son is disabled as well. She was a great person to talk to. We ended up chatting about everything that day. It was so nice to talk to someone who knows what you are going through. It is much needed at times. She told me about a new program Medicaid is offering for families with a disabled child who make more than the normal income cut-off. It is a great program that will help in addition to private insurance. They even have sitters that will come to your house. Please say a prayer that they approve us...it would be such a blessing!!
And now for the big news...Braylon was selected to be a poster child for Cerebral Palsy of Louisiana. His Dandy-Walker falls under CP which made him a candidate. We sent off the application last week and just had his "photo shoot" today. He will be on all the advertisements for this area and will be a guest at the telethon on March 23rd and 24th. And most of all, they will help out with some of the cost of therapy and equipment. GOD IS GOOD!!!
We have seen such an improvement the past month with Braylon. He is now off the bottle...that took some serious effort! He also can hold the sippy cup (when he wants to). He sat independently for almost a minute and stood with leg immobilizers on for over a minute. We can go to a restaurant without having to pack a bag of "stuff" to literally strap him up in a highchair. Tummy time is now fun as long as it is his idea...he spent a good 15 minutes on his tummy one day. What a long way we have come with that!
I can't wait to see what he has in store for us in the future. It looks like we are adding speech therapy soon along with his PT and OT. He already babbles quite often, so that should be interesting once he finally gets the words out. A big shout out to our therapy team for being so supportive of Braylon and all of his developments!! You guys rock!! Hopefully more good things to come!
Hooray for all of these blessings and for all the ones to come. I can't help but see the contrast in how we view the situation and how he views it. He was so excited to get into his new equipment! That's just his blessing of a spirit oozing out. Only such a precious one could make something so unusual and difficult so joyful and exciting. Therein lies his gift! Of course, I am a bit biased, but the folks at the local Cerebal Palsy organization made an excellent choice for a poster child. Once again his little blessing of a gift comes shining through! He can light up a room, so goodness what will his posters and media presence do??? He's a handsome and charming little man every time you see him! As you gave a big shout out to the therapy team, I want to give a big shout out to you and Justin! You rock as parents! It's a joy to watch you, and I would never know you were "getting your behind kicked" because you two are always smiling and lighting up around Braylon. Hum....this lighting up thing just keeps coming up...it must be genetic??? Maybe we don't need a genetics test to tell us that??? Ha! You all are blessing the world through your little man in ways you may never see. Keep up the great work. He's a perfect little angel and he is teaching us to celebrate our successes no matter how large or small and to not take things for granted. He is enabling us, and I'm not sure that makes him disabled. Challenged perhaps, but he seems to be forging right ahead without looking back or even knowing it's a big deal. His parents must be awesome guidance!!! Love ya'll! Aunt Shea
ReplyDeleteBlessings! So happy to see the update. I try and keep up with ya'll on Facebook. Ya'll are in our prayers daily. I have a 9 year old cousin that has Spina Bifida and he is such a great blessing to us all. I remember when he was fited with his first stand up chair when he was about 2 years old. He was esstatic. I am sure Braylon was the same way. They find ways to make everything joyous! I pray that things continue to go well for ya'll.
ReplyDeleteWhat a special young man! I love to read your posts and see the photos on FB. You are all 3 in my prayers every morning and I know God is going to use Braylon for wonderful things. A friend of mine from high school wrote a great book about her son "Beyond the Steps and Stares". "Raina Futrell, as the parent of a child with spina bifida, has lovingly and truthfully shared her heart, her discouragements, and all of her son's many successes in Beyond the Steps and Stares." She was a nurse and found ways to get her son the help he needed in WM. I will send you a copy if you have time to read.
ReplyDeleteSure miss you all and hope to come this summer and see everyone. Big Hugs and Much Love to you All! Aunt Linda