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Braxton Turned Three!

Braxton just had his third birthday! We are so thrilled with the progress Braxton has been making and cannot wait to see what the future brings.  We are getting ready to embark on the next journey with Braxton as he starts school in the fall, and took time to celebrate this milestone with family.

Some milestones for Braxton this year:

  • Braxton is officially cruising along walls, furniture, and anything that can hold him up!
  • He still likes to “walk” on his knees, but he’s doing more cruising than crawling which is exciting.
  • He took his first independent steps in therapy in November of 2013, and will take a few steps now, but mostly he walks with one hand being held.
  • If we try to hold both of Braxton’s hands, he decides his legs are spaghetti and refuses to walk! Little joker, that kid!
  • Braxton is FINALLY eating by mouth as of January 2014 and is officially over his severe oral aversion.  He eats up to 40 ounces of pureed foods a day.  We are still working on solid table food, but as of now he’s not a fan.
  • He is also working on straw drinking and has so far only taken a few sips, but he’s getting better!
  • He still has not learned any sign language or shown any interest, but we are continuing to learn and model for him just in case he decides to catch on and begin using signs.
  • We have been working with an iPad to communicate with Braxton and letting him make his own choices.  We use an app called Sounding Board and use 4 pictures of objects Braxton knows.  (Or 4 activities he can choose from). Braxton effectively scans the board and makes a selection indicating his preference.  He understands the purpose of the iPad and will reach out for it again when he’s made the wrong selection or is done with the current activity.
  • Braxton’s receptive language has grown by leaps and bounds! He understand so much more now.  Some words/phrases he knows are “It’s time to eat” – he whips his head around so fast and gets right over to his chair to eat.  “Let’s go bye-bye” – he will stop his activity and go to the door when it’s time to leave.  “come here” – About 70% of the time when we call his name or ask him to come to us, he will.
  • Peek-a-Boo is hands down his favorite game.  We ask “Where’s Braxton?” and he covers his eyes with his hands and waits a minute before uncovering them.  When he uncovers his eyes we say “Peek-a-boo” and he has THE biggest smile across his little face.
  • We are down to annual appointments with all of his specialists, which is great! At this point, Braxton is “medically stable” and we are just monitoring a few things to make sure there is no cause for concern later.
  • Braxton is still receiving Physical Therapy, Speech Therapy and Occupational Therapy twice a week.  Our therapists will continue to work with him once he starts school as the school therapies are not enough to ensure his success.
  • It seems like there is something new every week here lately, so be sure to keep up with us on Facebook so you don’t miss out!

 

This year,Braxton’s birthday party was superhero themed! We asked all of our friends to come to his party wearing their favorite superhero costume or t-shirt. At the party, we had felt capes and foam masks so that everyone could decorate their own! I also made a large city scape background for photos and just as a decoration.  Braxton did get a little overwhelmed again this year, but he participated a little more in activities and enjoyed his special day.  Here are some fun photos from his birthday party!

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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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