Tag Archives: family

Why Braxton’s Dad Rocks

Day in and day out, Joseph proves to be an awesome father to Braxton and his sister.  He doesn’t always get the credit he deserves, but we are so grateful and appreciate everything he does for us!

So, In honor of Father’s Day, here are just a few of the countless reasons why Braxton’s Dad rocks!

1. Braxton’s smile is never bigger than when he is with his Daddy.

Braxton with Dad

2. Dad isn’t afraid to get down and let Braxton “wrestle” him to the ground.

3. Bath time is always more fun with Dad.

Bath Time

4. Dad sings all kinds of silly songs to Braxton all day long.

5. Dad makes super cool airplane noises when feeding Braxton.

6. The love of music is deep inside both of them.

Music with Dad

 

7. Dad takes Braxton to school when he is home, so that mom can sleep a little bit extra.

8. Walking with Dad is the best.

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9. Dad will do anything (no matter how silly he looks) just to make Braxton laugh.

10. Dad always finds the coolest toys!

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11. Dad, without fail, makes sure Braxton gets plenty of fluids via g-tube.

12. Dad pushes Braxton around in his toy cars over and over because Braxton loves it.

13. Dad is a diaper changing ninja!

14. Dad is always full of fun, love, and laughter!

15. There is no love greater than the love Joseph has for Braxton.

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There are many, many other reasons why Braxton’s dad is amazing, but I don’t think we have enough space to host them all here on WordPress.  😉

Happy Fathers Day to all of the amazing fathers out there!

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Post-Op Update

First, my apologies for being a terrible blogger! I haven’t really found the time lately, but I do try to post quick Facebook updates often, so please check there if you don’t see me around here so often. 😉

Braxton looking out the window. Check out that pointer finger!

Braxton looking out the window. Check out that pointer finger!

On to the good stuff. Last week we followed up with Braxton’s ENT to check on him after his Tonsillectomy.  The ENT said Braxton looked great! His throat has healed nicely and his ears looked good as well.  Yay for good news!

Since the surgery, I have noticed Braxton’s babbling has completely stopped.  He used to babble and squeal and make all kinds of noises before his surgery.  I hadn’t heard him babble but maayyybe once or twice and he sounded very hoarse.  I talked to the doctor about it and he said it could be a psychological issue where Braxton was still feeling pain or discomfort.  It could also be a change in his hearing.  The doctor told me to continue monitoring him and if he isn’t back to where he was pre-surgery that we should go ahead with another ABR to make sure his hearing hasn’t worsened.  The hospital is down to one audiologist and scheduling is pretty far out so he went ahead and ordered the test.

Braxton is due for an ABR around August anyway, so that’s what we are going to try for.  Since Braxton is not really able to do a booth test, the audiologist has recommended a yearly ABR until we can get reliable results from the in-office tests.

I think Brax doesn’t like the idea of going under again because as soon as we left the office I heard “mamamama” at the elevator.  Geez. This kid. Sure likes to make a liar out of mom! In the last few days I’ve started to hear an increase in his babbling again which is a good sign.  I was really worried for a couple weeks there.

In May we will follow-up with the sleep doctor who will order another sleep study to check how the surgery has affected Braxton’s sleep apnea.

These are the last 2 little hurdles from the surgery and then we will have all of our annual follow-ups over the summer.

Overall, Braxton is doing really well.  He’s eating again with no problems, his walking and gross motor skills are back on track, and his big smiles are back in full force.

Happy Braxton. Happy Momma. :)

Happy Braxton. Happy Momma. 🙂

 

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Recovery Road

Today is Day 4 of recovery.  If you’ve been following us on Facebook, you will know that it’s been a rough couple of days.

Sleepy BabyWe got home on Wednesday just after 10 am and Braxton played for a little bit and then settled in next to momma on the couch for a nap.  He was extremely sleepy most of the day, but he was also very restless.  He would sleep for about 15-20 minutes at a time, wake up, try to get comfortable and then drift off to sleep again.  Thankfully, he slept alright through the night only waking twice in pain.

Yesterday, I thought he was starting to look better.  He ate a little bit of Yogurt and Applesauce which I’m sure helped his throat.  He even played a little bit more than Wednesday, but he was still very sluggish and lethargic at times.  I decided to stop giving him the narcotic the doctor gave us and just try to manage his pain with regular Tylenol and Ibuprofen.  I felt like the narcotic was making him so sleepy even though he has had no issue with it when given after other surgeries.  I didn’t see an immediate improvement, but I gave it some time to get out of his system completely.  He had another good night Thursday and even slept late today!

SleepyWhile today has certainly been his best day, I’m still concerned about his low points.  He will play and then just lay down wherever he is and try to fall asleep.  I will move him next to me on the couch and he sleeps for a little while and then he wakes up like he doesn’t know where he is.  He looks very out of it and hasn’t even had the narcotic in over 24 hours at this point.  I have placed him on my chest and he will just sit there for quite some time without even falling asleep.  Occasionally, he does sleep and I just hold him until he wakes up. I’ve never seen him like this.

 

Our ENT’s office called earlier today to check in on him and I told them that he seemed pretty lethargic and asked if it was out of the ordinary.  The nurse didn’t seem to worry since he hasn’t had a fever and is having sufficient wet diapers.  She also warned that days 5-7 are the worst for recovery as the surgery site begins to heal and scab over.  So, it looks like we are in for a fun weekend.  The nurse said it’s not uncommon for children to complain of ear pain, neck pain, and just generally feel uncomfortable.  This is the point where it is frustrating for me to know that Braxton cannot express this pain and discomfort.  He has been so sluggish and I am fearful of keeping him on the narcotic only to make him more tired and out of it.  There are times when I can tell he is hurting by the face he makes so I give him extra cuddles and medicine if it’s time.  So, I’m thankful to have *some* clue, but I really wish it wasn’t a guessing game and he could tell me exactly what is going on.  Poor baby. 😦

This evening, Braxton is looking more like himself and playing and even laughing more which makes me very happy.  Braxton ate 8 ounces of applesauce today…yayyy!! It’s so nice to see a smile on his handsome face again.  I’m hoping the next few days won’t be so bad, but I’m preparing for the worst.  This is definitely the toughest recovery period of all the surgeries he’s had.  Even his hand surgery wasn’t this bad.  Keep praying for my sweet boy.

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A Rocky Start to Recovery

Today has been rough.

Our ENT did warn me that the recovery for this surgery is not easy, and I certainly underestimated exactly how tough it would be.

Compared to the other times we have been here, the surgery part was a walk in the park. Brax was in and out in under an hour! The past surgeries and procedures required Braxton to be under for up to 4 hours.  In the past, we can usually wake him up in the recovery room pretty easily, and he goes right home and is pretty much back to himself.  That was not the case today.

RecoveryWe finally got up to our room at about 9:30 this morning and Braxton was awake, but pretty drowsy and lethargic.  The nurses did all the intake vitals and started his IV and medications.  By 10 am, he was asleep again.  Around noon, the nurse came in and said it was ok for me to start giving him clear liquids and if he did well, we could move forward with his blended diet.  She also said I should try to wake him up and see if he would take anything by mouth.

I was able to sit Braxton up, but he would not hold himself.  He just sort of flopped over and the oxygen/heart monitor started going crazy thinking he wasn’t breathing.  I tried to drip some water on his lips because they were already so chapped.  Braxton refused.  The nurse said to try some applesauce and I tried teeny tiny bites and Braxton refused to swallow.  He just held it in his mouth and tried so hard to spit it out.  I stopped trying and told the nurse I would just keep him hydrated with his g-tube.  I also asked for a wet washcloth to at least wet his lips with occasionally.  She was okay with that plan. (Duh, right?)

Drowsy BabyI ordered Braxton some Apple juice and Chicken broth from the cafeteria and he held that down pretty well.  But, he still would not wake up.  I tried to sit him up and every time he just flopped back over.  I have never seen him so groggy.  Around 3 pm I sat him up again and his chest and back were on fire! His blanket was only covering him from the waist down and all of his limbs were normal temperature.  I called the nurse in and she took his temp.  It was 102 degrees.  She called our ENT to let him know that Braxton had spiked a fever and was excessively sleepy.  Our ENT was not too concerned about the sleepiness part and said just to treat the fever for now.  I finally gave Braxton his homemade blend and although he wasn’t awake, he kept it down.

I just sat here watching Braxton sleep and could see he was in so much pain.  He was snoring very loudly and every few minutes he’d whine and go back to sleep.  So heart breaking to see him hurt and not be able to do anything about it.  The nurses kept him on Tylenol and Ibuprofen.  The doctor said since he was so sleepy that it would not be a good idea to give him the narcotic which would only make Brax more sleepy.  😦

I'm awake!Finally, just before 6pm, Braxton woke up.  Really woke up.  He had some life back in him and he started swinging his pacifier around and grabbing the cord from the pulse ox monitor swinging it back and forth.  I did happen to try to let him have some sips of water and he took 2-3 sips from his Honey Bear Straw Cup.  Then, I tried a few bites of applesauce and surprisingly he ate about half an ounce.  I could tell it hurt him to swallow, so I didn’t force him.  I just wanted something to coat his poor throat.

He stayed up after that and we played and snuggled.  I pulled out his trusty iPad and he played some of his favorite games.  It’s 8:30 now and he’s back asleep.  I was really starting to get concerned with him sleeping so much earlier, but after seeing signs of what is normal for Braxton, I think it’s ok for him to rest again.  Well, as best as he can with the nurses coming in every so often to check vitals and give meds.  I just noticed that he doesn’t seem to be snoring as much as he was earlier and the congestion has gone down a little so his breathing isn’t rattling.  Thank. Goodness.

Swinging

One thing is for certain, I have my work cut out for me this week helping him recover and stay comfortable.  Dad had to leave for work early this morning so I’m going it alone this round.  Please continue to keep Braxton in your prayers.  I know this recovery is going to take it’s toll on my poor baby.  But, I know he is going to be SO much better when this passes.  And so will I! To finally be able to sleep and not worry about my kid not breathing in the middle of the night will be such a relief.

Your thoughts and prayers are so appreciated.

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Rare Disease Day 2014

Today is the 6th annual Rare Disease Day, which is a day to bring awareness for all rare diseases/conditions.  The theme for this year is “Join Together for Better Care” and I cannot think of a more fitting goal this year.  The more people we can get to come together and be aware of different conditions, the better we will be able to serve individuals through medical care and funding for research.

NORD-Who-Does-Rare-Disease-Affect_DRAFT-2.19.14-e1393025442778In the United States, 30 million Americans have a rare disease.  This breaks down to 1 in 10 Americans, so chances are, someone in your life is struggling with a little known condition. Almost 2/3 of those affected are children.  (Source: NORD)

While the conditions may vary, the experiences for those with rare diseases is very similar for all who are affected.  Imagine going to the doctor and having to explain everything a doctor SHOULD know just so they can treat your child for an illness or operate on your child safely.  This is a reality parents of children with rare disease face day-in and day-out.

When we go to the doctor and I tell them that Braxton has Rubinstein-Taybi Syndrome, the usual response from medical professionals is something like, “It probably won’t surprise you that I don’t know what that is.”  And when Braxton has surgery, I have to educate the anesthesiologist and the nurses about the possible complications Braxton could face while under anesthesia.  It is sad that we live in a society where parents are more educated about conditions than the very doctors they trust with their children. We have made so many advancements in technology, but it is impossible for medical professionals to keep up. Because many people don’t know about RTS, I can’t simply choose another doctor who is familiar with the condition.   With over 7,000 rare diseases, it’s no wonder that doctors are unable to keep up.  They only learn about conditions as they come in contact with them through their patients.

But, we can all help this situation.  As YOU learn about rare diseases, YOU can help spread that knowledge.  Carry some facts with you and when you have the opportunity to share the information, do it! It’s true that simply changing your profile picture does nothing for Braxton’s immediate care, but when you change your picture and provide information about his condition, then you are teaching others and that does help us.  When you share our story, like our photos, comment on our Facebook page, that reaches others and at least exposes them to RTS.  The more people who know about RTS and other rare conditions the more likely it is these patients can find quality care and money to fund research opportunities.  Money is what is standing in the way of finding cures for children who face life threatening illnesses.  Braxton’s condition isn’t terminal, but there are countless children who are fighting big battles just hoping for cures.  Rare Disease Day provides an opportunity for these conditions to be known and hopefully find people to support them.

Rare Disease Day is an opportunity for awareness.  Why does awareness matter? Take a look at this graphic from Siren Interactive about the diagnostic journey.  Did you know that on average, it takes 7 years for a proper diagnosis of a rare disease? SEVEN YEARS!

Click to view the full graphic

Click to view the full graphic

Awareness matters for those who are just waiting for answers.  There are children with Braxton’s condition who were diagnosed at birth or shortly after, and then there are some who weren’t diagnosed until years later.  If more people knew about RTS, these children would be diagnosed right away and the proper medical care could begin immediately.  We could have known from the beginning and I wouldn’t have had so many sleepless night wondering if Braxton was going to live.  This is why awareness matters.  If we knew early on I could have plugged in to all the resources I now have.

Global Genes GraphicWe have to find a way to speed up the diagnostic process.  Many children without a diagnosis die before their 5th birthday, so waiting the average 7 years for a diagnosis is unacceptable.  What’s worse is finding out your child died from a disease that had treatments available and they could have been saved if a diagnosis had been made earlier.  That is just heartbreaking! WE have to do better. WE have to come together for all the children and families searching for answers and cures.  We can all make a difference.

Make the effort to learn about a rare disease today.  If you participate in the “Wear that You Care” campaign today and wear jeans, make sure you tell people who and why you are wearing jeans.  Take that chance to educate, because if even one more person knows about Rubinstein-Taybi syndrome, that is a success for us.  It would be nice to meet someone and not have to explain my child’s condition, I just want them to say, “hey, I’ve heard of that!”

Spread the word and celebrate Rare Disease Day!

Support Rare Disease Day

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