Monthly Archives: August 2012

Home…Safe and Sound

After we spoke with the audiologist we were taken to the recovery room to see Brax.  The nurses were still waking him up from the anesthesia and monitoring his vitals.  As we sat there with him and holding him we managed to get a few smiles out of him even though he was still pretty groggy.  His hands are completely bandaged, and he can’t do anything with them. That means no weight bearing so there goes all the crawling progress =/ Maybe it won’t set him back too far.  His cough was still pretty bad and the nurses said they were able to suction out a lot of mucous from his chest while he was under, so hopefully that helps him.  We stayed in the recovery room for about 30 minutes then got moved to another room to prep for discharge.

In the second room they continued to monitor his vitals, but he was pretty much awake and just laughing and smiling away with us.  We put his hearing aids back in and he was just happy as could be.  His vital signs remained consistent so they took him off the monitors.  We gave him about 2 ounces of pedialyte just to see if he’d keep it down.  After about 10 minutes, they went ahead and took the IV out since he kept the pedialyte down.  We were given our discharge instructions and they finally let us go home.  Overall, everything happened much faster than anticipated.  I thought we were gonna be there forever!  We were released with a medication for Brax so we picked that up on the way home.

Now, we are finally home and Braxton is resting safe and sound. 🙂

Thanks to everyone for your prayers and well wishes!

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And Now We Wait…

Arrived at Dell Children’s Hospital this morning at 7am. Got Braxton all checked in and prepped for surgery. We started later than planned, because the doctor was running late from another procedure he did this morning. They finally took him back a little after 9am to get started. One of the nurses told us they would be calling us with updates throughout the procedure. The hand part will take about 3 hours and then the ABR will be about an hour and half. I will keep editing this post as we get more info and to let you all know the outcome….Thank you again for your continued love and support.

9:47 am – Nurse called to say that Braxton was under anesthesia and doing well. Dr is starting on his right hand.

10:50 am – OMG! Hand surgery is done already! I thought they said it’d be 3 hours!? It’s only been an hour! Just spoke to the doctor and he said Braxton did great. He did need to do a skin graft on both hands, but they are very small and all should heal well. We’ve got some follow-up appts in the next 2 weeks, and all should go well. Brax is going to be so MAD though! The doctor said he’ll need to stay in his bandages for 2 weeks and so he can’t do anything that would manipulate his hands. It’s really going to kill little man to stay still. Now, they are doing the ABR which can take up to an hour and a half. If we’re lucky that will be done quickly too!

11:40am Nurse called and Brax is still doing well. They are about halfway through the ABR. Next time they call it will be to speak to the audiologist. Then we get to see him in the recovery room. Ugh I’m the worst at this waiting game. Patience is a virtue I do NOT have.

12:10 pm Nurse called and said the audiologist would be with us soon.  Spoke to her and Braxton’s hearing hasn’t improved.  These results confirm his last test which shows a mild hearing loss in both ears.  She says we still definitely need hearing aids and it’s great that we’ve gotten them already. Good news is that his hearing hasn’t gotten worse and assuming everything else (i.e. brain structures, voice etc) is ok he should be able to speak just fine, bad news is that his hearing most likely will not improve over time. I suppose it’s always a possibility, but she says she hasn’t really seen that happen in her 37 years doing this.  At least we have everything going already that he needs to be able to start talking to us, and hopefully we don’t learn later that his brain structures may keep him from speaking.  For now, we WILL be optimistic. It’s only a matter of time before he starts talking like crazy 🙂

The Next Update will be a new entry after we’ve seen him in recovery and have him home safe and sound.


Some pictures to make you smile. Braxton is truly the happiest baby even in the worst of times.


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Pre-Op and Genetics

Well tomorrow we go for Braxton’s hand surgery.  He has bilateral syndactyly, which means that his hands are webbed.  Well not completely. His left hand the ring and pinky finger are almost completely webbed together. On his right hand, the ring and pinky finger are webbed, but the webbing doesn’t go completely to the top. (Pics below) At our first visit to the hand surgeon he told us he’d like to wait as close to 2 years as possible so there would be more room to work with.  With a 1-2 millimeter margin of error, on a newborn that 1-2 mm could be huge so we needed to wait.  At our visit in May, the dr decided that Braxton’s webbing could be corrected pretty easily and that we could do it this summer.  We followed up in July, and here we are all scheduled for surgery.

Braxton will need a small skin graft on his left hand due to the webbing and so they’ll take a little bit of skin from inside his arm to do so.  Doctor said it will be about a 2 week recovery.  He should be in a splint type thing for about a week and then bandages for another week.  Braxton is going to be so mad! He’s doing so well trying to crawl and pick up toys, I really think it’s going to kill him to not be able to use his hands very well.  But I know in the end it’s better.  I mean, why don’t you try to tie your ring and pinky finger together and see how well you are able to use your hand. Once they are released I’m hoping to see even more progress in Braxton with regard to picking up toys and maybe even starting to feed himself!  It’s scary to think he’ll be under anesthesia for a little over 4 hours, but exciting to see the progress he’ll be able to make once the webbing is cut.

You can see where the webbing has almost completely fused the ring and pinky finger together

You can see where the webbing is very short so should be easily corrected.

While we are there, Braxton is having some blood drawn for Endocrinology to check his growth hormones to be sure nothing is abnormal there. And we are also having blood drawn for the Geneticist.  I spoke to her today and she told me there are 2 specific genes she will be testing.  Ideally, we’d want to examine every gene, but it’s very, very expensive to do so.  There is a genome sequencing test available now, but it’s still in the early stages and not covered by insurance.  We hear within the next couple years the test may be covered by insurance.  So for now, the geneticist has to decide what genes she thinks would most lead to a syndrome based on Braxton’s features and all the issues he’s had.

The first gene she is testing is the SALL4 gene which is associated with “Duane Radial Ray Syndrome” which can cause eye disorders and abnormalities in the bones of the arms or hands.  This syndrome is very rare and so there isn’t a whole lot of info out there about how many people worldwide have, or much on expectations.  People with the combination of Duane anomaly and radial ray malformations may have a variety of other signs and symptoms. These features include unusually shaped ears, hearing loss, heart and kidney defects, a distinctive facial appearance, an inward- and upward-turning foot (clubfoot), and fused spinal bones (vertebrae). [Info from:]

The second gene is the ZEB2 gene which is associated with “Mowat Wilson Syndrome” which can affect GI tract, genitourinary, heart, and eyes.  The syndrome is also associated with Hirchsprung Disease which is a disorder of the colon in which certain cells are absent causing chronic constipation [something Brax has indeed had issues with].  Reading through all the anomalies associated with Mowat Wilson, I see that Braxton has a lot of the ones listed, so maybe a diagnosis is close.  But then again maybe not.  The doctors were initially CONVINCED he had Trisomy 13 or 18 because of his facial features and that test came back normal.   This is also a very rare syndrome so not much is known about life expectancy and whatnot, so even a diagnosis may not be helpful. [Info from:]

The Endocrinology workup should be back in about 3 weeks, the genetic workup will take 1-2 MONTHS so just lots more sitting and waiting.  It’s not like a diagnosis would make me love my son any less, but I drove myself crazy the first few weeks of his life researching disorder after disorder learning about expectations and short life expectancies…it was really quite depressing.  I decided then and there to stop researching, get away from the computer and just take it day by day.  A diagnosis IS NOT going to change our current treatment plan.  We’re going to continue to do what we’re doing, all the same doctors will be involved, all the therapy will be the same, and most importantly we’re going to love and enjoy him just the same.  Sure, a diagnosis would give us some idea of what we could “expect,” but you know what Braxton has showed me about “expectations?” He doesn’t care about them.  He’s going to continue to thrive and beat the odds.  He doesn’t seem to care about sticking to doctor’s “expectations.”

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Nothing Like a Father’s Love

Is that not the sweetest?

“I aint gonna lie..seeing that my son actually hears me when I talk is better than anything else I have experienced. He turns right away to me and smiles all big :)” – Dad (Joseph)

If that doesn’t melt your heart, then what’s wrong with you?!?! Haha just kidding. But really though, I love the bond Joseph and Braxton have with one another. There is truly nothing sweeter than seeing a father and son have a love like they do.  Joseph is gone every other week, and when Brax was first born he would tell me that he was worried Braxton would forget him or not know who he was.  Let me tell you, this little boy KNOWS who his daddy is!! The second Joseph walks in the door Braxton’s face lights up. When he’s right in front of daddy he’s constantly reaching out to his face trying to kiss him or eat his face! haha

Braxton got his hearing aids on Monday afternoon while Joseph was at work.  Joseph came home Tuesday night and so Wednesday was Joseph’s first full day with Braxton. 🙂 When he’s home from work he keeps Braxton at home instead of sending him to daycare. [What a great dad!] Joseph said he really noticed a difference in Braxton and his hearing.  He was much more aware of his surroundings and would actually turn in the direction of where sounds were coming from.  Before, we’d make a sound on his left side and he might hear it but he wouldn’t turn left, he’d just look around trying to figure out what it was and where it came from. Now he turns directly toward the sound. Yayyy!! Progress!  While I’m at work, I see this status update from Joseph: “I aint gonna lie..seeing that my son actually hears me when I talk is better than anything else I have experienced. He turns right away to me and smiles all big :)” and it made my heart smile.  He got to fall in love with his son all over again.  It’s a whole new world for Braxton, and there is so much for him to experience.  I’m glad he can finally hear the man he absolutely adores.

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Huge Thank You From Us

Wow, just wow. I really had no expectations when I started this blog, but I certainly didn’t expect this.  We have had such a huge outpour of love and support and encouragement from family, friends we talk to all the time, even friends we hardly speak with anymore, and people we’ve barely met.  We’ve gotten phone calls, texts, private messages from so many people.  I cannot express to you how much it means that you all took the time to at least visit the blog and moreso if you read through everything! [Sorry, I know I can get a little wordy, so my blogs are pretty lengthy lol]

I seriously thought that maybe only a few people would check it out…you guys sure proved me wrong! Thank you so very much for all the kind words, all the prayers, all the encouragement, and all the well wishes..they are ALL very much appreciated!!

For anyone asking what you can do to help, the only request I have is that you not be sad, don’t cry, don’t take pity, don’t feel sorry…instead, I want you to celebrate.  Celebrate the miracle that is Braxton’s life, celebrate the triumphs that he has, celebrate every time Braxton beats the odds, share his story, continue praying and sending well wishes, and truly that is all we can ask for.

I can’t say it enough…THANK YOU all for everything!  🙂



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