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Braxton’s Birthday Project

Can you believe Braxton is going to be 3 years old already?! Time has flown by and our little man has certainly come a long way!

Every year, we have some very nice people who contact us via our blog or Facebook to ask for an address to send cards or gifts to Braxton on his Birthday or for Holidays.  While we are very appreciative of such kindness, this year, we’d rather you do something a little different to honor Braxton on his birthday.  Without further ado, here is this year’s project for Braxton’s 3rd Birthday, which is on June 24th!

Braxton's Birthday Mission

 

Braxton’s birthday theme this year is Superheroes and with that in mind, you have all just been given a Top Secret Mission.  Only, it’s not so secret! We encourage you to share this far and wide to spread some kindness and tap in to your own super powers.

This year, if you are not local, instead of sending Braxton a card or gift, we are asking that you make a donation in his honor to one of the organizations who has touched our life deeply. Any amount is appreciated! Even $5 can go a long way.  If everyone gives a little, it adds up to a lot that these organizations can do for their community.  These are the organizations we’ve chosen:

U.R. Our Hope

U.R. Our Hope – U.R. Our Hope is a registered 501 (c)(3) non-profit based in Austin, TX that assists families on the journey to finding a diagnosis or helps them navigate the healthcare system with a rare diagnosis.  They provide meals for families during hospitalizations, help facilitate research and medical referrals, provide gift cards to families traveling for medical appointments, and are hoping to raise money to gift Whole Exome Sequencing to families still searching for a diagnosis.  U.R. Our Hope was instrumental in not only helping us find a diagnosis, but helping us connect with other families.  That face-to-face support was exactly what I needed to cope and empowered me to be the mom you all admire now.  I was very scared and alone at the beginning of this journey, but with the help of U.R. Our Hope I found my footing and have now helped others walk the path as well. I’ve also been honored to be a member of the board of directors for the past year. Although we have now found a diagnosis, we are forever indebted to U.R. Our Hope and hope you will consider supporting them as they have helped us.

Undiagnosed Documentary

Undiagnosed: Medical Refugees – This is the documentary we were honored to be a part of this year.  We were able to share our diagnostic journey with the team to help others understand why finding a diagnosis is so important.  Countless families are struggling to find a diagnosis and sadly, some have lost their children without ever knowing the reason.  Our journey was MUCH shorter than average and I’m so grateful for the help we’ve had along the way.  This documentary would be so revolutionary and change the way medicine is practiced today.  A donation to the film would go toward helping them complete the project so that the world can learn what we have experienced firsthand.

Special Friends Foundation

Special Friends Foundation – Special Friends is also a registered 501 (c)(3) organization who serves families with Rubinstein-Taybi Syndrome, which is Braxton’s diagnosis.  Special Friends provides financial assistance with medical bills, uncovered medical expenses, special therapies, augmentative communication and so much more.  A donation to them would help the fellow members of our RTS family.

Tinysuperheroes

Tinysuperheroes – This extraordinary organization provides capes for children fighting big battles. Capes are sent to children battling life threatening illnesses, lifelong disabilities, and other chronic medical conditions.  Parents of children with special needs already see their children as superheroes and a cape shows the rest of the world just how strong our kids are.  Braxton received his cape last year and has seen him through surgeries and doctors appointments.  You can empower a Tinysuperhero for just $35! There are so many waiting to receive their cape.

Sammy’s House Austin

Sammy’s House Austin – Last, but certainly not least, is Braxton’s amazing daycare.  Sammy’s House is also a registered 501 (c)(3) non-profit organization.  They provide childcare services for children who are medically complex.  When our daycare closed last August, I could not find a provider who would take Braxton and that I trusted with his medical care.  Sammy’s was a godsend.  Their director lost a child to Down Syndrome many years ago and he was the inspiration behind Sammy’s House.  She, too, could not find a provider she could trust or who had enough experience to work with her medically complex child, so she started a center all on her own.  Sammy’s operates entirely off of donations and serves children with a variety of disabilities.  When Braxton started last August he was crawling and pulling up to stand, but had minimal cruising and no desire to walk.  In 9 months, Braxton has made tremendous progress! He is walking with minimal assistance, cruising longer distances, eating by mouth, understanding language a lot more, and just overall growing every day.  The staff is constantly pushing the kids to unlock their full potential and have done wonders for Braxton.  A donation to this organization ensures that other kids can reach their potential as Braxton has and continues to do.

 

 

We appreciate all of you for loving and supporting Braxton along this journey.  While we love the cards and gifts, Braxton already has so much and we would love to spread the generosity.  These organizations have all touched our life in one way or another and it would mean the world to us if you could spare a few dollars to one, two or all of them! I don’t need proof of your kindness, but when you donate to any of the organizations, please make sure to leave a note that your donation is in honor of Braxton so that they know who sent you.

We hope you will join in this mission and open your hearts!

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Thankful Thursday: Braxton is Walking!

Yes, you read that title correctly! Braxton is making amazing progress with walking.  I picked him up from daycare the other day and his teacher said, “Look what your son is doing!” She grabbed him by one hand and he started WALKING with her!!!! I quickly came to my senses and said “No, no, waaiiitt! I have to get this on video!” And here you go:

Yayyyyyy!!!! We’ve been walking him around at home a little more and his teacher told me today that they make him walk everywhere.  They are so patient with him and if he takes longer than the other kids, it’s totally okay! I am soooo sooo thankful for this incredible accomplishment.  I’ve cried lots of happy tears.  With every milestone, I think back to the hospital in the first few days of Braxton’s life and think how the doctor’s didn’t even give him but a few weeks to live and here he is rolling, sitting, crawling, standing, and finally walking.  First steps are always awesome, but when everyone counted your child out before he even had a chance, first steps are a miracle.  I take nothing for granted. Braxton has worked so hard and continues to do so each and every day.  His hard work is definitely paying off and I am so incredibly proud of Braxton.

So is his sister. Aileen drew a congratulatory card for Braxton after I showed her the video of him walking.

Such a proud sister <3

Such a proud sister ❤

And if that wasn’t enough, today, they channeled their superhero powers and practiced together. ❤

Beyond blessed and so incredibly thankful for my amazing kids.

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Surgery Day

I have to admit….this 10:30 am check in for the hospital was pretty strange. I felt like we were late the whole way here! We normally have to check in at 6:30 am! I’m definitely thankful for the couple extra hours of sleep.

We arrived at 10:00 am and had the fastest check-in in the history of check-ins! We were checked in, registered, and in a room by 10:15 am. The nurse took vitals and got all the paperwork started for us. Braxton was starting to get a little cranky so dad took him to find one of the little tikes cars they have and pushed him around in the hallway.

The boys played while we waited for quite a while for all of the doctors to arrive.

Once everyone got there, we spoke with each one individually about what to expect today. We were able to address our concerns with the anesthesiologist about his new RTS diagnosis and risks of anesthesia associated with that. Braxton has not had any issues with previous anesthesia events, but I wanted to be sure they knew exactly what to look for. One of his doctors called me herself and voiced her concerns about Braxton being put under, and she told me that normally she recommends an overnight stay for observation in children with multiple medical issues. Since he has not had issues before, she said she will leave the decision up to the anesthesiologist. We are prepared for an overnight stay, but hoping for a late afternoon release. We did learn that Braxton his having a new type of anesthesia since he is having a circumcision. In addition to the gas he will be receiving, he is also getting a shot in his low back to numb his groin area for 4-6 hours to help curb any discomfort even when he wakes up after the procedure. He’s never had this before, so that’s the worrisome part for me this time. He will have 4 procedures today and I’m not totally sure how long he will be under.

Just before noon, the nurses took Braxton back to the operating room to get everything started. This part never gets any easier.

See you soon, little man.

See you soon, little man.

UPDATE: 1:30 pm – Just spoke with the ophthalmologist. The first procedure is done. She attempted the probing and irrigation of his tear ducts again and if the ducts were big enough, the silicone stents would be put in. She reported that Braxton was doing well and she was able to probe and irrigate the tear ducts successfully. This time she was able to use a few larger probes than the first time when only the smallest would even insert in to the tear duct. She also told me that when they irrigated, that the fluid DID drain through the nose, so that tells us that his tear ducts ARE in tact. There was also a “pop” sound that indicates they were able to push through a blockage. Unfortunately, she was not able to place the stent. It kept running in to a hard spot which is possibly hard tissue or his nasal bone. Hopefully being able to irrigate completely will be enough to help Braxton clear his eyes up. If not, the next step is Jone’s tubes which are the glass tubes I wrote about previously. That would be another couple years away, if it is necessary. The urologist is now beginning the circumcision. Will report back when we get the next update.

UPDATE: 2:08 pm – And just like that, Procedure #2 is done. Spoke with the Urologist and she was able to do the circumcision without any issues. Recovery will be a couple of weeks and some other precautions for a little longer than that. We’ll follow up with her office in a month. Braxton is still doing well under the anesthesia. She said the anesthesiologist is fairly confident that Braxton will not need to stay overnight. *whew* They are getting ready to start the ABR now to check his hearing and see if the hearing loss is better, worse or the same. This part can take up to 2 hours, so update in a few!

UPDATE: 3:35pm Braxton just finished with his ABR. We met with the Audiologist who performed the test and she reported that there was a slight decrease in his hearing. :/ This kinda bums me out. He really seems to be hearing better when he is not wearing his hearing aids, so I was hopeful it had gotten better. He may need a slight adjustment on his hearing aids now, but we will follow up with his ENT and Audiologist later to be sure. He should be finishing up with the final part of today which is a CT scan of the inner ear to check for any structural abnormalities that would effect his hearing or speech. Hopefully our next update will be from the recovery room after we’ve seen him.

UPDATE: 4:33 pm Braxton is done for today. We are in a recover room waiting for him to fully wake up before we can go home.

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UPDATE: 7:27 pm – We are finally home! Braxton is feeling a little more like himself and having some spurts of energy here and there.  When we arrived, a special gift was waiting for us in our mailbox.  Tinysuperheroes is an organization who sends superhero capes to children with various medical conditions to help empower them and make them feel like the superhero they are inside! Braxton received a cape today! He’s sure to make a speedy recovery now that he can officially channel his superhero powers. Fitting ending to a hectic day.

Even super heroes need their rest.

Even super heroes need their rest.

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Filed under Family, Kids and Family, Life, Special Needs Child