Monthly Archives: August 2013

He knows the plan He has for us

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 [New International Version]


Several weeks ago, we had a guest pastor give a sermon at Church, and it’s only now that I’m realizing that God was speaking to me then and continues to do so now.  The sermon was about trusting God and having faith in His plan for us.

The pastor compared God (the parent) speaking to us (the child) in much the same way we as parents speak to our child.  The pastor’s example was him calling his daughter away from the television.  He asked his daughter once, she did not listen.  He called her again, she acknowledged and slowly started toward him, pausing every couple of steps to look back at the television.  He called her a third time, a little more sternly and it was only then that she hustled over to him and obeyed.  We are very much like our children when it comes to following our Father when He calls us.  When God speaks to us, we may acknowledge Him, but we also question Him and whether or not we should follow what He says.  Not necessarily to be disobedient, but because we do not have faith or the courage to make the change in that moment.

A second example the pastor shared was a moment when God spoke to him to make a career change.  He said he heard God tell him that he needed to quit his job TODAY.  Naturally, that is much easier said than done.  The pastor had a new wife and child on the way and anyone who is married will tell you, a husband coming home to his wife saying, “hey, so I quit my job today, because God told me to do it,” isn’t going to fly over too well.  Pastor did speak to his wife and they prayed and ultimately he decided not to quit his job, yet.  Long story short, he interviewed for a new job opportunity and there was another pastor in the room who stopped him during the interview and told him that he knew he [our pastor] was being disobedient.  That he knew God had spoken to the pastor but he had not yet obeyed him.  Whoa. That was God finally yelling at His child, stopping him in his tracks and telling him what he needed to do.  The pastor went home and quit his job.  Within a week, the company he had interviewed for called him back and he got a new job that paid far better than the previous one.  It was only then that he knew he should have listened the first time God spoke to him.

There have been many times in our journey where we have both felt like God was speaking to us.  It is not always about making a change, but He does or says things to us to let us know that He is right here walking right beside us.  He consistently puts people in our lives to guide us and take us exactly where He wants us to be at that point in time.  I have spoken on this before, at a time where my faith was already being tested, at a time when we had not been to Church in quite some time.  It was not too long after, that God called us to come back to Church.  Joseph called me from work and told me that he felt like God was trying to tell him something and that we needed to go back to Church.  So we did.  We went back exactly when we needed to.  We have grown so much and our faith has been restored.

I’m not saying we are spouting off Bible quotes or living a life of a perfection now, but we are trying to do better.  I am now recognizing God’s presence in our lives even in moments that seem hopeless.  I wrote at one point about longing for Braxton to speak and it wasn’t but a week later that out of nowhere, Braxton looked right in to my eyes, grabbed my face, and pulled his little mouth to my cheek to give me a kiss.  It was in that moment that I felt God telling me that if I just slowed down and paid a little more attention, I could see and feel my little boy speaking greater volumes than his voice ever could.  Braxton ‘tells me’ he loves me all the time by doing exactly what he did in that moment.  His little hands reach up to grab my cheek and he ever so softly comes forward to give kisses.  He does not have words, but God has shown me that he can speak right to my heart.

More recently, God has shown himself to us through this change in daycare that I wholeheartedly believe He called us to make.  God spoke to me through one of our therapists who recommended we make the decision to place Braxton in a daycare that could foster his growth and help him fulfill his potential.  (Dad calling his child to step away from the TV). We somewhat talked about it, and thought, “Hey we are all happy and Braxton is doing well.  And really, the extra cost is not a desirable option at this point.”  (We stayed at the TV).  It wasn’t but 2 weeks later that we learned our daycare would close.  Immediately, I thought, “Ok God, I get the message!” (Dad calling us again.)  We began calling around to different centers including the one that was originally recommended all the while trying to figure out an option to keep him where he was or even keep him at home.  (We heard dad and we’re slowly turning to him, but still pausing to look back at the TV).  When we were finally all out of options and decided to tour the center that we ultimately decided on, the choice we needed to make was clear.  I knew at that moment that if this was what was meant to be, that God would make sure everything fell in to place and help us both mentally and financially.  I put my faith in Him and trusted that he would see us through. (Thankfully we made it to dad before he had to yell at us!)


Happy BraxtonFinally, it has been one week at the new daycare and we are very happy with the choice we had to make.  We are all still adjusting, but Braxton seems to be very happy and his needs are definitely being met.  The teachers are still giving him time to explore and adjust, but they are wearing him out!  He’s actually taking regular naps at a scheduled time, and sometimes he can’t even wait that long!  Yesterday, the Executive Director caught me as I was leaving the daycare to check in with me to see how we were doing and if everything was going okay.  I told her we were very happy with our decision and her staff.  They are all very friendly and have communicated with me quite a bit about Braxton and getting to know him.  She told me that her teachers are absolutely smitten over him and she often has to get on to them for stopping in to visit him too often.  He’s quite possibly the hardest child NOT to fall in love with.  Having worked in a daycare, I know that all children find a way in to your heart, but there is always that one child you bond with more than others, and Braxton seems to be that child for so many.  The director also talked to me a little bit about some of the plans the teachers have for Braxton.  Sitting at the TableShe said one teacher had come to her in the morning and excitedly handed her a list of equipment she wanted for Braxton to keep him happy and comfortable.  Some of the things included a Tumbleform chair for feedings so that if he fell asleep he would still be upright and comfortable during his feeding.  I am so thankful they have already fallen in love with him and are so enthusiastic about helping him reach the potential we all know he is capable of achieving.

And call me crazy, but in just one week I have seen changes at home as well.  Braxton is standing  a lot more and trying to cruise around the house.  He’s been doing this ‘knee-walking’ thing where he walks at a kneel instead of standing.  He had done it quite a bit here and there, but only a few ‘steps’ and then he’d crawl.  This week, I’ve seen him try to ‘knee-walk’ much longer than usual.  Yesterday, he spent about 15 minutes chasing a toy around both walking on his knees and crawling.  Here’s a video of course 😉


Isn’t that awesome!? I’m sooo excited for Braxton.  It’s clear that he will walk much sooner than we think.  I can’t attribute that all to the new daycare, but I’m certain it’s been a motivator even in just a week.  Braxton is in a class with all boys who are high energy and always on the move.  Surely he is sitting back looking at them thinking, “Hey I can do that, too!”  He’s also been babbling more.  Every day this week when I picked him up he started babbling from the back seat.  I’ve even heard some new sounds.  It may be a while before I hear words, but for now I love the sound of his babbling and I love the special moments we have where he can just look at me and I know and feel his love for me.

When God spoke to me and told me this is what we needed to do, I was very hesitant.  Hesitant because of the extra money it would cost and because I didn’t want to lose the people we had grown to love so much and who had grown to love Braxton so much.  Upon touring the new facility and hearing all of the great things other parents and our therapists had to say, I felt God’s presence.  I felt Him telling me “yes, I know this is going to be difficult and maybe a little scary, but just trust and have faith in Me.  I will not steer you wrong.”  And He hasn’t.  Every day is further proof of God’s greatness and His grace upon us.  We are beyond blessed each and every day.  Part of me is picturing God sitting with his feet kicked back and looking down at me saying, “See, I told you I knew what I was doing.”

Learning to listen to God and trust in His word is sometimes hard to do, and we are still learning every day.  Much in the same way our children have to learn to listen to us and trust that we actually know what we’re talking about.  We tell them not to touch the stove because it’s hot and they will get burned, but they touch it anyway.  We give dating advice in hopes to spare them a broken heart, but they don’t always listen.  One day they look back and realize their parents weren’t crazy and knew exactly what they were talking about.  God tells us to trust in Him and the plans he has for us, but because we are still trying to walk our own path, we often fail to recognize that He knows what is best and is simply trying to guide us to the right path.

Though we walk with trepidation, our faith will not waver. We know that our future is full of hope because we do not walk this journey alone.



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

Braxton’s Next Chapter

Today was Braxton’s big day.  I’m not sure why I was so nervous for him, he’s been in daycare since he was 2 months old! Actually, I know exactly why.  Because I’m a mom, and mom’s worry for our kids about everything.  But, today, it was even deeper than that.  I had to trust someone new to take care of my sweet boy.

The decision to enroll your baby in a childcare facility is not one that should be taken lightly.  It is truly a difficult choice to trust someone else with your child. I went back and forth with the decision when we brought Braxton home from NICU.  Ultimately, I knew the extra income would help us in the long run, and that I really wanted Braxton to be included right from the beginning.  I didn’t want to treat him differently here at home or have him treated differently out in the ‘real world,’ so we decided to put him in daycare.  I spoke with so many people before we made our choice, and it was by far the best choice we could have made.

Braxton spent his first 2 years in this particular daycare and the whole staff became so much more than the people who watch my kids.  They became more like friends and family.  They were absolutely the people you would want watching your children if you weren’t going to be able to stay with them all day.  They watched him grow and come to life right before their eyes.  In the beginning, Braxton didn’t do much at all.  He wasn’t even very responsive when we tried to play with him.  Regardless, they loved on him, sang to him, put him next to the mirror, gave him toys, and did everything they would with any other baby.  Eventually, Braxton took off and his personality finally shined through.  When we learned they were closing, I was beyond saddened.  There were lots of tears in his final weeks there.  I am forever grateful to these women for the role they played in my child’s life.

Though my heart is heavy, I am excited to start the next chapter of Braxton’s story.

Braxton and sister ready for their first day!

Braxton and sister ready for their first day!

Today, Braxton started at his new daycare.  I was so nervous about handing my baby over to someone new, but my mommy instinct let me know that he was going to be just fine.  I have heard many wonderful things about this daycare and in speaking with them several times, my mind is at ease and I do trust that this is the best fit for us and that they will take care of him just as I would.

The drop-off went well, as expected.  Braxton has absolutely zero anxiety about new environments.  He immediately crawled around and explored the new classroom.  He quickly found a window and made his way over to try to reach it.  I got everything settled and left all of his supplies with his teacher.  Picked little man up for one more big hug and kiss and off I went to work.

I was sad.

He did so well, and I was nervous for nothing.

We had a therapy session for him this afternoon, so I had to pick him up early.  About an hour before I was supposed to pick him I almost had a heart attack! I was sitting at work and my phone lit up; it was the daycare.  Seriously, my heart stopped.  Thankfully, they were just calling to verify my feeding instructions.  They weren’t sure that they followed them as I had written.  We got everything cleared up and they went on to feed him while I worked and resumed breathing. *whew*

When I arrived to pick him up, his teacher was finishing up his feed and I was able to show her exactly what I meant and how we feed him here at home.  I told her that I was really okay with whatever was easier for her as long as he gets fed and they don’t deviate from his schedule too much.  The kiddos were all down for their nap (including Braxton!) so we were able to chat for a little bit.  She told me that Braxton’s first day was wonderful.  He did so well and they didn’t have any issues at all.  She told me there were a couple other kiddos who were new to the class who had a rough day transitioning, but Braxton took it all in just fine.  That’s our boy! She definitely appreciated our letter as well. 🙂

His teacher reported that Braxton actually spent a lot of time on his feet today and not so much sitting or crawling around.  I must say that I love how the classroom is set up.  Just about everything is within arms reach for Braxton so that he could technically cruise his way through the whole classroom without ever losing a surface to balance on.  Lots of opportunities to work on cruising and transitioning.  He is going to walk so much sooner than we thought! She also told me that Braxton was fixated on the class fish tank.  She watched him check out the fish and try to find a way to bite the tank.  Haha.  She said he stood there for a while trying to bite the front of the tank and moving around looking for the best place to get a grip.  He finally opted for the edge of the tank and was able to get his mouth around the side and the front. Obviously, she stopped him and did not let him chew away, but she did watch his problem solving skills in action.  He was entertaining today to say the least.

Overall, Braxton had a really good first day and my mommy nerves are starting to calm down.  I had to fight the urge to call and check on him every hour, but I did it!   I made it through the day without calling once! (I am soooo glad they called me though!) I’m really looking forward to building a new relationship with this daycare and seeing Braxton reach his full potential.  There is so much going on in his mind right now, I can just tell.  I can see the wheels turning, and I know he’s understanding so much more than we think.  This is definitely the time to jump on that and give him the push that he needs to go to the next level.  I cannot even begin to express how excited I am to see what milestone he hits next.  This is only the beginning of another exciting chapter in the life of Braxton Joseph.  Stay tuned, you won’t want to miss it!

Big smile for a great first day of school

Big smile for a great first day of school

1 Comment

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

Dear Teachers, Meet Our Son

Yesterday, we visited the new daycare Braxton will be attending, starting on Monday. I’ve been very sad about leaving our old daycare as Braxton has been there since he was 2 months old, but visiting the new one yesterday gave me so much to look forward to.

When we were walking to the office, one of his new teachers saw us and followed us in excitedly. She asked if this was Braxton and when we said yes, she was SOO excited to finally meet him. One of our therapists stopped by recently and filled her in on Braxton so she knew all about him. She even asked questions about the Care Notebook I left when I enrolled him. She assured me that she read it several times and even repeated some of it back to me word for word. Pretty impressive! Mom is sold. I know he will be very well taken care of here.

We visited the classroom and let Braxton explore a little bit to make sure he would be okay when we dropped him off on Monday. He took off right away straight to a window and played with some of the toys. His class is all boys who are full of energy and all over the place. I’m predicting he is going to pick up on wanting to walk just so he can keep up! I can’t wait to see his progress.

Before we left, his teachers also asked us to write some things down about what he likes and doesn’t like to help them out when he starts next week. I decided I would write a nice little introduction letter instead of simply listing things out. I also decided to share it with all of you as you get ready to send your little ones off to school. Feel free to modify this to introduce your little one to his/her new teacher as well!

And on Monday, join me on Facebook for a hold hands and cry it out session, as I’m sure I will be a mess! Are you sending little ones off to school, too? I’m sending big sister to 2nd grade and Braxton to a new daycare all on the same day…someone pass the tissue!


Braxton Joseph <3

Braxton Joseph ❤

Dear Teachers,

This is the joy of our life, Braxton Joseph and he is 2 years old.  We have had so many wonderful people come in to our life and we’re so excited to be able to add you to that list.  While it would be near impossible to tell you everything about our son, we’d like to give you a little introduction and then let you have fun getting to know him all on your own!  I have to warn you, that it’s going to be hard NOT to fall in love with him.  He has that kind of effect on people. 😉 We strive to keep open communication with all of the teachers, therapists, and doctors in our lives, so if at any time you have any questions or issues, please don’t hesitate to ask!

First, our son, Braxton (or Brax as we sometimes like to call him), was recently diagnosed with Rubinstein-Taybi Syndrome (RTS) after quite the diagnostic journey.  Since RTS is one of the lesser known syndromes, here is a brief explanation.  Much like Down Syndrome, children with RTS all have very similar facial characteristics, medical issues and a variety of cognitive and developmental delays.  Children with RTS usually have a small head, beaked nose, broad thumbs, and a smile that lights up the room and causes their eyes to almost completely close and slant downward.  Medical issues vary for each child, but typically affect things like their heart, brain, and gastrointestinal system.  Braxton is monitored closely by many specialists, and at this time there is no major cause for concern.

Developmentally, these children will attain most of the major milestones, but usually just a little later than children of typical development.  Brax is about 10 – 11 months old developmentally, but we really expect to see that take off very soon.  He is crawling very well and can get across the room faster than you can turn around.  He is cruising a lot more these days and every once in a while gets brave enough to let go and transition between two surfaces.  His first steps are not far away, and I can guarantee when that happens he will be quite the handful, just like any other 2 year old boy! The biggest challenge for Braxton and his RTS family will be speech.  Many children are nonverbal, but they do learn to sign or use a communication device very well.  We are learning sign language and try to use it as much as we can around him.  He has not yet picked up any signs, but we know that the mere exposure will help him to learn in his own time.  When he is ready, our speech therapist will work on using communication devices, but right now we are just getting him familiar with an iPad, so he will use one in therapy often.    He does babble and make sounds, but there are no words just yet.  We are hopeful that Brax will have some language so we talk and sing to him often, which leads me to things he likes.

Braxton really enjoys music.  He will stop what he’s doing to listen when music is playing.  Dad can play a few instruments, so when Braxton starts to get a little fussy, dad will play a little piano or soft drum beat and Braxton will usually calm right down.  Brax really enjoys playing catch with his big sister or pretending to knock her over because he is so strong.  I’m sure he will love being around other kiddos his age.  He also needs some extra sensory input in the form of chewing and some head banging.  At this point, Brax will put EVERYTHING in to his mouth, except food! (More on that in a bit). We do try to discourage chewing on things that are inappropriate like tables, wood, and floor surfaces, but he always manages to find them.  Don’t feel bad if you don’t get to our little woodchuck right away and he’s gnawed at a table for a couple of minutes.  We also try to discourage his blatant head banging against the wall or door.  He will sometimes grab a toy and hit it against his chin or head, and as long as it’s not something that will hurt him, it’s usually okay.  He will only do it a few times and then toss it and chase after it. Prolonged head banging should be stopped and redirected. Braxton also LOVES windows and being outside.  He enjoys sitting at our patio door and staring outside.  When outside, he likes to feel the wind and look up at the sky.  Braxton has an infectious laugh and will sometimes amuse himself and laugh at picking up and dropping toys.  If you are having one of those days where you can’t seem to get out of a funk, tickle him right under his arm or play a game of peek-a-boo and his laugh is sure to cheer you up.  Oh, and he thinks diaper changes are hilarious. (Especially ones where he has a little surprise for you) Typical boy, huh?

Our little man has a pretty easy going attitude, and will usually go along with everything, but he will definitely let you know if he is unhappy.  He will start to cry or whine when something he likes is taken away or if he needs something like a diaper change or just to be loved on a little.  Like any normal 2 year old, he doesn’t like to be told “no,” but he does understand the word.  He will test you a little on it though, as expected.  He will pause for a moment and then try to go back to the activity he was supposed to stop, so sometimes he will need some redirection.  He also does not like very loud noises or high pitched voices/sounds.  At his last daycare, he would take his hearing aids out when all the babies started crying at the same time (smart kid, right!?).  If he hears a sound that startles him or that he doesn’t like, he will start to cry and it will take a moment to settle him down.  If you just pick him up, give him his pacifier, love on him, and let him know everything is ok he will calm down.  If not, it is okay to take his hearing aids out for a little while until the sound is gone or he calms down.

And that brings us to medical equipment.  Braxton has hearing aids and a G-Tube for feeding.  He is pretty good about keeping his hearing aids in and does not mess with them often, unless there is a sound he doesn’t like.  He should have them in all day at all times, unless as explained above there is an unpleasant sound and he cannot calm down.  There is no need to remove them during nap time.  He just recently really discovered his G-tube and extension and is just now starting to play with it or chew on the end.  We usually have him in a onesie so that he can’t get to the button and play with it and it also helps keep the extension tucked in to his shirt.  His extension can be removed between feedings if you are comfortable detaching and reattaching it when necessary; otherwise we just tuck it in.  I’ll have a detailed instruction guide to help with feedings, but I promise it’s very easy and you will learn quickly. We are working on getting Braxton to eat more by mouth, but he’s developed a severe oral aversion and his progress is very slow.  We encourage you to try feeding him by mouth, but ask you to take your cues from him.  Some days he will open his mouth right up and eat an ounce or more, and other days he might only take a few bites and push you away or fall asleep.  Just be patient with him and together we will get him to learn that eating is a wonderful thing!

Overall, Braxton is pretty easy to take care of and if you give him a little time, his personality will definitely come through and you will love him as much as we do.  If you want to learn more about him, please feel free to ask us or browse his website at, we write about everything and I’m sure you will also star in a few posts yourself, so be sure to check it out and definitely let me know if you don’t want your picture used or anything like that.  We are so looking forward to this next chapter and getting to know you all.  Thank you for taking the time to read about our son and for caring for our child and so many others.  You are appreciated more than you could ever know.


Thank you,

Vanessa and Joseph, Parents to the happiest little boy in the world 🙂


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

Vote for Our SXSW Panel Idea!

Friends and Braxton supporters, I need your help!

As you all know, I’ve been very involved with U.R. Our Hope and they helped us so much as we struggled to find a diagnosis.  I have been asked to join a panel discussion with U.R. Our Hope and others to discuss the use of online resources, social media, and blogging to navigate the healthcare system while on a diagnostic journey.

When I was finally ready to share my story, the internet was my saving grace.  It is through the internet, my blog, and Facebook that I have been able to learn so much and connect with so many people.  In fact, it is through my blog that I first learned about Braxton’s diagnosis! I had several people contact me asking if he had been tested for Rubinstein-Taybi Syndrome well before our geneticist even thought it a possibility.  Reading about it ahead of time made the news much more tolerable and I was truly finally able to breathe when we received our test results.  Having someone to walk this journey with me, being able to connect with other parents, learning about “real life” experiences instead of relying on “textbook” definitions has helped immensely.  I want to reach other people and help them in the same way that I have been helped.

If you know anything about South by Southwest (SXSW), you know that people from all over the world and from all walks of life attend this event.  This would be the ultimate chance to reach out to others and let them know they are not alone.  The internet has made so much more possible for me and for many others I know.  I honestly do not think I could have survived this and be the parent that I am 20 years ago.  The information and resources readily available via the internet are simply astonishing.  Help us help others!

All you have to do is vote for our panel ideas by clicking the links below.  They will also be in the sidebar of our site until voting ends September 6th! You do have to create a Panel Picker account, but it’s quick and easy. I promise! Create an account, click the “thumbs up” to vote for BOTH of our panels and that’s it! You’re all done! You can only vote once, but we would so greatly appreciate it if you did! If so inclined, you can even leave a comment to tell others who are browsing through topics why they should choose ours! Or if you have any questions, leave them there and we’ll be happy to answer them.

Using Social Media to Navigate Healthcare


Click to vote!

Medical professionals, patients, and savvy navigators of the healthcare system will discuss resources to use when traditional channels are not effective or timely when a person or a family is faced with a medical crisis. The healthcare system can be daunting to those unfamiliar with the language and culture of the medical community. The benefits of online education, support groups, blogs, radio blog shows, Facebook groups will be explored. We will give specific examples of how individuals and families can benefit from utilizing social media on their diagnostic journey. We will discuss the benefits of having a patient advocate, whether it be an individual or an online community. We will talk about how to protect your privacy in this open and public forum. From finding a diagnosis to negotiating with healthcare networks, third party payers, and providers to have services covered, we will delve into the pitfalls that hinder effective care, and then provide solutions.

On a Diagnostic Journey

Click to Vote!

Click to Vote!

Navigating the healthcare system when the diagnosis is not clear is a daunting process. Individuals with undiagnosed disorders lack identity and are often isolated and forgotten. This panel will provide resources to assist those with undiagnosed disorders in finding answers through advocacy and collaboration. On the panel are both individuals who know the undiagnosed journey, and those whose mission it is to guide and advocate for them. Utilizing social media, Skype, online support groups, blogs, and radio blog shows the panel members have been able to reach out “without walls” to help the undiagnosed community.


Thank you all so much for supporting this important mission!

Leave a comment

Filed under Life, Special Needs Child

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.


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.


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