One Year After the Diagnosis

It’s hard to believe that it has been exactly one year since we finally learned Braxton’s diagnosis.

I went back and read my entries leading up to the day we received our results and even a few weeks after, and I recognize that there has been so much personal growth.  I am in a very different place now and continue to grow with every passing day.

Before we received our diagnosis, life was full of questions, uncertainty, fear, confusion, frustration, and a host of many other unpleasant feelings.  It was so difficult to have to go to the doctor and tell them that I had no idea what was going on with my son.  Braxton’s care was entirely symptomatic.  As new things came up, we treated that specific issue, but had no idea how it fit in to “the big picture.”  It was as if we were grasping at straws just hoping that something would work.

Outwardly, we presented our best face and tried to remain positive, but the battle within was constant.  There were so many sleepless nights and nights full of tears simply because I felt as though I’d failed as a parent and felt that the medical community had failed us.  I was always grateful for our team of doctors, but always, always felt like more could have been done, like more should have been done.  But, alas, “coulda, shoulda, woulda” changes nothing.

Life after the diagnosis has been a dramatic difference.  Sitting in the doctor’s office one year ago, I remember my uneasy breathing and grasping the chair beneath me until my knuckles were white, until the doctor walked in.  When she finally delivered the news, I remember exhaling, a weight being lifted, and even smiling because I had already known what the doctor just told me.  I will always be grateful to the few people who reached out to us through our blog to suggest Rubinstein-Taybi Syndrome.  Doing my research then, helped me accept the diagnosis in the office that day.  It was familiar, it was not life-threatening, I was at peace.  I was relieved.

BraxtonThe first few weeks of researching and trying to explain things to our family was very difficult.  Our family members learned and dealt with it in their own way.  Some are still coping.  Some still believe that Braxton will magically be “cured” of RTS, although there is nothing to cure.  You can’t change genetics.  Braxton is who Braxton is going to be for the rest of his life.  He is loving. He is full of joy. He is full of spirit. He is full of drive and determination. He is a fighter. He is just like any other 2-yr old daredevil little boy. He may not move as fast, but he is well on his way.  Our family has been supportive every step of the way.  We have all grown and we have all come together.

Every day is a little bit easier.  Life is still full of therapy, but the doctor’s visits are less than before the diagnosis.  Most of the doctors are now seeing Braxton on an annual basis, with the exception of his Cardiologist who still monitors his heart closely.  Now that we have a diagnosis, our care is more focused.  I know some of the issues we will face and how other families have dealt with them, which has helped tremendously.  I can make informed suggestions to our doctors based on real experiences.

Our therapy goals are now geared toward the things we know will present difficulty.  We know Braxton will walk, so we are really pushing that goal and even his daycare is doing everything they can to get Braxton there.  We purchased a medical stroller instead of a wheelchair because we know Braxton will walk soon.   We know that Speech will be our greatest difficulty so we are trying many different methods of communication.  Braxton is still not picking up any sign language, but he has taken to the iPad and successfully demonstrated purposeful choice-making.  We’re now moving forward with a grant to purchase an iPad and augmentative communication program.  We’re still using sign language and picture cards, but we know this is what he is going to need long term, so we are able to provide medical documentation for a grant.  Before the diagnosis it may not have been so easy.

There is a whole other world of possibilities that has opened up for us now that we have some insight in to exactly what is going on with Braxton.  I can make decisions with more confidence and have more options available.  I felt stuck before the diagnosis and just accepted most of what the doctors recommended, because I didn’t want to look back in hindsight and wish I would have done more.

We have a new support group that has been fantastic.  In the first few weeks after the diagnosis, I asked A LOT of questions on the Facebook group and Listserv. Thankfully, so many shared their experiences and put my worries at ease.  A year later, I can now welcome new parents and share our own experiences. I’ve had parents reach out and tell me that my blog helped them come to terms with the diagnosis and to a place of acceptance. We have come full-circle.  There is a sense of family among our diagnosis and at any given time I can reach out for support and answers.  That is, perhaps, one of the most important differences in life before and after the diagnosis.  Before, I could reach out to families who had similar experiences but due to their specific diagnosis, it was handled differently than Braxton would have been.  I was thankful for the support and guidance, but it never really quite fit exactly.  After diagnosis, I see/hear stories and think “Oh my, that is EXACTLY how it happened with Braxton.  Here is what worked for us…” We finally have a “medical home,” a group of people who truly understand, people who have “been there, done that” who can offer advice and words of wisdom. It has truly made such a difference.

Braxton has grown tremendously and is making wonderful progress.  His receptive language is getting better every day and he is finally showing real signs of understanding.  His gross motor skills are taking off as well.  He is cruising like a champ, “knee-walking” all over the place and taking independent steps during therapy.  His is eating almost completely on his own now.  He will eat about 30 ounces a day by mouth and he gets one bottle via g-tube just to supplement calories.  He is even starting to drink now! With most of my worries gone, I can focus on all of the amazing things Braxton is doing and just be in the moment.  And the moments are incredible. Positivity is no longer something we pretend, it just comes naturally.  We are still going to have hard days ahead, but I am better equipped to face them and I know I don’t have to face them alone.

 

 

This anniversary comes just before “Undiagnosed Children’s Day” and I am reminded that there are still so many searching for what we have found.  The average journey to rare diagnosis takes about 7 years.  Yes, SEVEN years.  Our diagnostic journey was significantly shorter than the average but still took quite a toll on us. I can only imagine the families who are in agony and still searching.  To those families, I say please don’t ever give up hope.  Soon the answers you seek will find you.

To everyone else, I say please keep these families in your thoughts and prayers.  Continue to support the organizations who serve the Undiagnosed and Rare community because it is those organizations that helped lift us through the hard times.  I don’t know where we would be were it not for U.R. Our Hope and our Physical Therapist who helped guide our journey.  I’m grateful to them for fighting the fight.  And I’m so proud of the documentary team who is filming “Undiagnosed: Medical Refugees.” I hope this film comes to fruition and the world learns what we have had to face and why answers are so important.  More can be done and more needs to be done for these families.

 

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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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Surgery Day – Tonsils & Adenoids

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Well, here we are again sitting at Dell Children’s Hospital. Braxton checked in at 6 am for his Tonsillectomy and Partial Adenoidectomy.

Everything has gone pretty smoothly this morning.

It’s too bad we didn’t see this anesthesiologist sooner! He read off Braxton’s list of symptoms and halfway through he stopped, looked up at him and said “Is he a Rub-” and I said “Yup, Rubinstein-Taybi” thinking he would mis-pronounce it. The doctor went on to say that was going to be his guess based on the list of symptoms. He seemed surprised when I said we didn’t have an official diagnosis until Brax was 21 months. Crazy that now we have a diagnosis, we are running in to doctors left and right who are familiar with RTS! Where were they at the beginning of this journey?!

After speaking to the nurses, the anesthesiologist, and the ENT we had a little time for smiles and snuggles.

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Braxton just went back with the anesthesia nurse. Our ENT said the whole procedure should only take about 45 minutes to an hour. I will update this post with info and also share on our Facebook page.

Thank you all so much for your continued prayers and support.

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///UPDATE 8:07 am: ENT just came in and said he’s all done! Braxton did really well. Doc said he removed the tonsils and about 80% of his adenoids. He also replaced Braxton’s ear tubes. They are moving Brax to a recovery room and waking him up. We should get to see him soon.

///UPDATE 9:37am: Dad had to leave for work so I waited until the nurse came and said it was ok to see Braxton. He was still asleep in the recovery room when I arrived. I have him some hugs and kisses trying to wake him but he wouldn’t really open his eyes. He was much slower to wake than he has been in previous surgeries. But, he did finally wake and the nurse said his Oxygen level was still dipping down to the 80s so we had to wait for him to maintain a good level before going up to our room.

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About 15 minutes later Braxton was keeping his eyes open and his Oxygen level was 95-100 so the nurse let us come up to the room. Another vital check and we are getting settled. Brax is still pretty out of it, with a semi-glazed over look. Not many smiles out of him just yet, but his vital signs are good and I’m sure he will be just fine. I will keep you posted!

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Preparing for Surgery Number 5

Tonight we are preparing for Braxton’s 5th surgery.  He is having a Tonsillectomy and Partial Adenoidectomy tomorrow morning.  We are scheduled to check-in at 6 am with surgery at 7:30 am.

For the first time ever, we don’t have 5 other things scheduled with it.  I did try to get a good dental cleaning scheduled, but our dentist wasn’t available and I didn’t want to reschedule the T&A.

In December, we went for Braxton’s Sleep Study to check for sleep apnea before we proceeded with the surgery.  We received our results in January which showed moderate obstructive sleep apnea.  We already knew his tonsils were quite enlarged, but this showed that they were also affecting his sleep much more than we originally thought.  Braxton had 13 apnea episodes during the sleep study and the longest was up to 23 seconds of Braxton not breathing! Anything over 6 is considered “mild” apnea. Although this seems very high, the Sleep Medicine Doctor said that he has had other cases where the episodes were in the triple digits which meant the children ended up with a tracheotomy.  Either way, Braxton’s apnea is enough of a concern to do something about it.  The first step is to remove his tonsils since we know they are already quite large.  The sleep doctor is confident this will help Braxton sleep better.

After the surgery, Braxton will have another sleep study in a few months to make sure the Tonsillectomy helped resolve the apnea.  T&A is not an easy surgery though.  The recovery time is at least 2 weeks and the greatest concern is excessive bleeding.  I did meet another mom who said her little one got pneumonia after having his tonsils removed because his lungs could not handle the amount of air being taken in after removing the obstructive tonsils! Our ENT has already said that Braxton is going to stay overnight so he can be monitored (mainly due to the risk of bleeding). Typically, kids are not released until they show they are able to drink fluids to keep from becoming dehydrated.  Since Braxton has a g-tube, we do not have a risk of dehydration.  So hopefully our hospital stay will not be more than an overnight.  I am also worried about Braxton regressing with his feeding.  He has come SO far and is eating SO well, I hope this surgery doesn’t bring back his oral aversion and prevent him from wanting to eat again.  We shall find out in due time. Braxton is a tough guy and I’m sure he will do well.  Plus, he has his cape from Tinysuperheroes this time, so he has the power of an entire Super Squad behind him!

Super Braxton!

Please keep Braxton in your thoughts and prayers tomorrow as he undergoes his surgery and recovers here at home.  As always, I will start a new blog post in the morning to keep you posted and I will also post updates to our Facebook page.

 

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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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Letting Go Of The Guilt

I worked on my “Letter to NICU Parents” for a few weeks and even after I wrote it, I read it about 20 times.  Then, something jumped out at me. I left something really important out.  A feeling that I felt then and occasionally still haunts me. A feeling I’m sure lots of new parents in NICU feel.   (And probably some people who are years into the journey).

Guilt.

The idea that I must have done something wrong for this to happen to my child.  Not necessarily Karma coming back to bite you, (although I think some people go there as well). But, when you learn that your child has a congenital anomaly or some kind of change in their gene structure, you immediately feel like it’s your fault.   After all, it’s genetics, right? And genetics are passed on, so it must mean it came from you.

New parents, I want you to know that you didn’t do anything wrong.  You didn’t do anything to “deserve” this.  These things just happen and its just the right combination of genes and circumstances.

Mom and Brax in NICUI remember sitting there in the NICU not wanting to tell anyone what was going on because they would automatically assume that I didn’t take care of myself when I was pregnant or that I had done something that wasn’t safe.  In reality, I took better care of myself while carrying Braxton than I did when I had my older daughter.  I ate better, drank less caffeine, drank more water, exercise – eh not so much, but overall I did a better job.

 

Dad and Brax in NICUI remember talking to Joseph and over and over he said it was his fault.  He felt that maybe his job exposed him to radiation and he brought it home and passed it on to his son.  He works in the oil field and while radiation exposure is possible, it’s really not much worse than what we are subjected to every day.  He thought maybe it was due to his past battles with drugs, but other than alcohol, he hadn’t touched a drug in years so there was no way possible that could be the cause.

Then, finally, a few months after our NICU discharge, we got an appointment with the geneticist.  Talk about a guilt trip.  The first genetics appointment can be a little intimidating.  They want to know EVERYTHING and I do mean everything about your life story.  They want family pictures of anyone who might look like your child, if anyone had any congenital anomalies in the family tree, heart conditions, if anyone had a stroke under the age of 50, medications you took while pregnant, any traveling you did, and it just feels like the barrage of questions never ends.  By the end of it all, you’ve got a list of everything on your side of the family and everything on your significant other’s side of the family, and whether you want to admit it or not, subconsciously you look at the list and compare it – who has more things “wrong” with their family? Who did this come from? Is it my fault? Is it Dad’s fault? Which one of us has the faulty genes? Is there something I could have done to prevent this? Wait, Is it the doctor’s fault? Should he have seen something in the ultrasound? The internal questions never end.  You go on with your fears and your uncertainty. You try to hush the voices and just be grateful for the little boy or little girl you have in front of you, but the guilt lingers.

Guilt is like a ticking time bomb.  Just sitting there, stirring at the back of your mind, waiting to cause a fight.

When our geneticist finally told us she wanted to move forward with Whole Exome Sequencing I just knew this was going to give us the answers we needed.  When the counselor explained WES only provides a clear diagnosis for about 20% of those who are tested, that confidence wavered.  Four months of waiting was excruciating.  After 18 months, what’s another 4? But, when you are waiting on test results, it’s like the last hour right before you are supposed to get off work for vacation – it. takes. for-evv-errrrr. It feels like an eternity.  And again, subconsciously you hope it eases the guilt.

Our appointment to discuss results finally arrived 4 months after testing.  We were nervous, we were shaken, we were scared.  We could finally have an answer or know a whole lot of nothing.  Genetics is an area that is really difficult to understand.  There isn’t really a cut and dry kind of situation.  There seems to be a lot of gray areas.  We received our report and as the geneticist went through each of the variances, that imaginary checklist came back.  Variance number 1 (blah, blah, explanation, blah, blah) Mom is also a carrier.  Variance number 2 (ugh that’s one for me, blah, blah) Mom is also a carrier.  Variance number 3 (crap, it’s all my fault, I knew it was, blah, blah) Mom and Dad are carriers. Variance number 4 (ugh, he’s going to hate me, blah, blah) Dad is a carrier. Variance number 5 (ugh, now he thinks it’s all his fault, blah, blah) Dad is also a carrier….and so forth and so on until we finally reached the end of the report and both stared blankly tallying up our imaginary checklists.

Then, the geneticist finally goes on to say that these particular variances are what they call “Variances of Unknown Significance.” Genes that are known to cause deleterious conditions, but since mom or dad are also carriers it could just be the gene passing down without any issues or there could be issues later, she couldn’t really say for sure.  There was one gene that neither of us were carriers for and it was the one gene that explained all of Braxton’s issues.  This variance is known as a de novo mutation, meaning new, meaning that no one in our family is a carrier, meaning that it was no one’s fault, it’s just something that happened. The geneticist also explained that every single person in the world has gene variances.  If they performed WES on anyone, a whole list of genes would show up even in “perfectly healthy” people.  This is that gray area.  Some genes require that both parents be carriers in order for a disorder to appear, but how do you know that before you have a child? Are we supposed to just go around performing genetic tests on everyone before they have children? Sure, might seem like a good idea, but it’s not logical.

The fact is, there are lots and lots of babies who are born without any issues who carry all sorts of variances. And then there are some babies who have just the right variance to cause things to be not quite right.  Is it fair? No. Is there anything you can do about it? Well, not really.

For future children? Maybe.  Once you learn of a genetic variance, you can find out if it is something that can be passed on or if it is something that is a one time deal.  For us, we know we have a less than 1% chance of having another child with Rubinstein-Taybi Syndrome.  But, we also know that we are both carriers for a gene that causes deafness, so it is likely if we had another child that they would also have hearing problems.  Likely, but we are not completely certain.  Herein lies the issue with genetic testing.  How much is too much information? Do we really need to know all of the genes that are mutated? Does the doctor have the right to withhold genetic information that “we don’t need”?  But, those are all questions for another topic and another day.

We are grateful for the Whole Exome Sequencing.  It gave us the answers that we needed. I know that it doesn’t work that way for everyone.  Some people just get a list of genes and the doctor says “Well, here are all the variances we found, but we aren’t really sure how that fits your child’s picture” Say whaaa??  Those parents are still left in the dark, still searching for answers, still blaming themselves or looking for someone to lay blame with.  To those who are still searching and to those who have found answers, I have to say – stop blaming yourself.  Stop blaming your significant other.  There is nothing you could have done differently.  You might think you could have chosen a different partner, but who is to say that would have changed anything? Perhaps you would be fighting a different battle? A bigger battle? You never really know and playing the “what-if” game gets you nowhere.  Just angry and alone.

So, to all the parents in the NICU (and even some of us veterans) take a deep breath and let it go.  Yes, it is easier said than done, but you have to let it go.  Let the guilt go.  You are not a bad person, a bad parent, someone karma was after, someone God was after – nothing could have changed the circumstance.  Let go of the guilt so that you can move forward.

It is not your fault.  

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Letter to the NICU Parent Who Feels Out Of Place

When people talk about the NICU journey it is usually in reference to children who were born prematurely, but what many don’t know, is that there are many children who were born full-term (or pretty close to it) who end up in NICU due to congenital anomalies or other health issues.  We fall in to the second category.  I recently saw that a local non-profit requested letters to NICU parents from those who have been there that could be handed out as a welcome to families and to ease fears.  I knew I wanted to contribute because it seems like families in NICU for anything other than prematurity often get left out and feel like they don’t belong.  If I could hand a letter to parents in the NICU, this is what I would say to them. For those who also share this experience, what would you add? 

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For parents of children in NICU who were born full term with congenital anomalies.

Dear NICU Parent,

First and foremost, Congratulations on the birth of your beautiful baby boy or girl!  Secondly, I’m sure this has already been quite the rollercoaster and is not at all what you were expecting.  Take a deep breath and know that YOU ARE NOT ALONE.  I have sat exactly where you are and felt many of the same emotions.  Our journey may be different, but we have many, many shared experiences.  I hope this letter helps to ease your worry and helps guide you down the first few steps of this new path.

Brax in NICU My son, Braxton, was born full term and we had absolutely no idea we would need to be worried about him once he was born.  Honestly, it was several hours before we knew anything at all.  To our knowledge, we had a perfectly healthy 8-pound baby boy.  Then, the neonatologist came in and our perfect little world came crumbling down.  She told us that our son’s blood sugar was very low because he would not take anything by breast or bottle.  She continued on to say that there were some features that pointed to some kind of syndrome.  His eyes were wide set, his nasal bridge was flat, his head was very small, his ring and pinky finger on both hands were fused together, and his toes were crossed.  She also thought she heard a significant heart murmur.  But, she could not definitively say he had a particular syndrome, only that he needed to be transported to another hospital to undergo testing.  12-hours after birth, my son was taken away to another hospital, without me.  I was devastated.  I’m sure you are too.

I remember sitting in the NICU thinking, my child does not belong here.  As I heard the nurse tell a mom that her son gained a few ounces and is now a whopping 4 pounds, my heart fell. Here I am with a giant 8-pound baby while the baby across from him is only half his size. I don’t belong here. I said this over and over.  I know now this period was critical in keeping my child alive and I am forever grateful to the experience in hindsight, but in that moment, I dreaded everything about it.

My son spent 3-weeks in that NICU and had a g-tube placed and many tests done to determine the genetic cause of his abnormalities.  The testing in NICU had no results.  We learned of some conditions that affected his eyes, heart and brain, but we had no cause and no prognosis.  After discharge, we began the marathon of therapies and specialists to help my son develop and to give us answers about what was causing his condition.  Braxton was 21-months old before we had an official diagnosis.  Now, he is almost 3 and doing extremely well.  Much better than the neonatologist who first saw him ever expected.  He is almost walking, he is finally eating by mouth and rarely uses his g-tube (we were told he’d need it for life), and he has taught us so much.  We were deathly scared and angered and saddened and every emotion that you could think of in the beginning.  We now know a joy like no other. Make no mistake, this journey is hard, but you can do it and it’s so worth it.

Here are some things I learned along the way and some I wish I had learned early on:

1.  It’s okay to grieve.  In fact, you really need to grieve.  Grief is a natural part of the healing process.  Your entire pregnancy, you were planning for this precious little girl to play dress up and create amazing art with, or a daring little boy who was going to be the next football star or karate champion.  Now, here you are in the NICU and the doctor says they don’t think your child is going to make it, and if they do they will never do anything meaningful with their life.  (We’ll get back to that in a minute.) Your whole world is crushed.  Believe it or not, you just lost a child.  Yes, the child you birthed is here and living, but the child you dreamed of has passed.  The realization that you may not get to do all the things you planned, hits you like a bus.  It’s okay for you to be sad about that, angry even.  Mourn the loss so that you can move on to caring for the child you have in front of you.  You will build new dreams.  You will find ways to make the dreams you had come true.  There are accommodations for everything.  I know of so many children with special needs who play sports, dance, do karate, swim, and so many other amazing things.  The dreams you have for your child can still come true, it just takes a little more work and you might need to make some adjustments, but it can happen.

2. No one has a crystal ball. There is not a single person on this planet that can tell you with complete certainty what is going to happen with your child.  Our doctors do the best they can with the information they have, but they cannot predict the future.  If the doctor says your child may not survive and if they do they won’t have a meaningful life, first, shame on them for saying such a thing, but second, the world is FULL of people who doctors said wouldn’t live for very long and I can tell you that every one of them has a meaningful life.  If you have a diagnosis, understand that all diagnoses have a spectrum and every child with that diagnosis is different.  The research can give you an idea of what to expect, but it is not absolute.  Just look at children with Down Syndrome.  There are children who have severe challenges, but there are also a lot of children who have only a few complications.  Many of them grow up to hold full-time jobs and live on their own.  And I’m sure all of them at some point were told “your child may never crawl/walk/talk/live on their own/hold a job/etc.”   You never know what could happen. Never, never, never lose hope.  

3. You know your child best. Yes, your doctors went to school and have many years of experience, but your child is your child and no one knows your child the way you do.  No book and no amount of experience could let anyone be the expert you are when it comes to your child.  You are the one with him/her day in and day out.  Always trust your gut and don’t be afraid to stand up to a doctor.  Believe it or not, sometimes they are wrong.  You are the advocate for your child and you will have to fight for everything they need.  Just because a doctor says “well children with X,Y,Z Syndrome typically don’t have severe GI issues, so it’s probably just reflux,” does not mean you stop there if your child is projectile vomiting their entire feed, every single feed.  There are lots of tests that can be done to investigate the issue further and just because THEY have never seen a child with X,Y,Z syndrome have the issues your child has, does not mean that it is not possible.  When in doubt, always know you have the right to a second opinion.

4. People mean well, but they almost always say the wrong thing. For us, we hated when anyone told us “Well, things could be a lot worse.” Braxton’s dad would usually quip back, “Yea, well things could be a lot better, too!” Other things like, “You know, God only gives special babies to special parents” or “God would never give you anything more than you could handle” or “he looks normal to me!” And then somewhere along the way you get promoted to sainthood with comments like “Oh, I just don’t know how you do it!” or “God sure knew what he was doing when he gave you that child.” Or “I would just die if that happened to my child, you are so strong.” Um, thanks? I’m not stronger than the person next to me, I’m just a parent and that’s what parents do.  We rise to the occasion, because who else is going to do it?? We are strong because we have no choice but to be strong. I get what people mean most of the time, but it still stings a little.  And, if you are like me, after a certain point you just want to hit the next person who says something out of place.  You learn to ‘grin and bear it’ or use the opportunities to educate the person who says the wrong thing.  Just know that even the most ridiculous things often come from some place with genuine sympathy. Also know, that sometimes people are just downright mean, and those people don’t deserve your time.  If you are quick-witted you may be able to educate them and put them in their place quickly, but most of the time you are so stunned at the sheer audacity they had to say such a thing that you just stare blankly.  If that happens, just move on, they don’t matter in the grand scheme of things.

5. You WILL learn everything you need to know.  I remember getting ready to discharge from NICU and a nurse going over operating the g-tube pump one more time and thinking how in the world am I going to remember all of these steps.  Just before discharge the nurse went through all of the paperwork with me and discussed the specialists I needed to call for follow-up appointments.  We were discharged with what seemed like, a mountain of medical supplies and a long list of people to call.   I was overwhelmed. I didn’t know where to start.  I became more organized than ever.  I made charts, spreadsheets, journals, and kept detailed records.  I created a medical records binder to store everything I needed for Braxton.  As I realized that everyone wanted to know exactly what happened from the time he was born, what doctors he saw, exact dates, exact procedures, I began to maintain a timeline.  This was very helpful in filling out the mounds of new patient paperwork.  Eventually, I created a single page document with a list of diagnoses, medications, procedures, diagnostic imaging and surgeries.  I have a spreadsheet that lists all of our doctors, their specialty, the reason they are treating Braxton, and phone/fax numbers for every one of them.  These two documents have been the single most important for us, and our doctors really appreciate the “Cliff’s Notes,” so to speak, on Braxton.  It is scary and overwhelming, but just take a deep breath and know that YOU. CAN. DO. THIS!

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you. mommiesofmiracles.com

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you.
mommiesofmiracles.com

6. Don’t be afraid to ask for help or accept help when it is offered! This is a hard road and you simply cannot be on “go” 24 hours a day, 7 days a week.  Caregiver Burnout is very real and can affect you and your family. You need to take care of YOU so that you can take care of your child.  Don’t be afraid to ask someone to sit with your child so you can take a shower, take a nap, or step outside in the fresh air for a few moments.  If someone offers to help, let them! Give people specific tasks that help you check off your to-do list and satisfies their need to help you.  Ask someone to cook dinner for you, bring dinner to you, put gas in your car, bring you gift cards for the grocery store, or simply ask them to sit with you and learn about your child.  People care about you and they want to help, don’t shut them out.

7. Take care of YOU! This should probably be number one! It’s okay to take a step back and take a deep breath.  There are going to be many times along this journey that it is all simply too much to handle.  Understand that this is natural and you have every right to take a break.  Go get a massage, a manicure and pedicure, go out for dinner, just do whatever will help to recharge you so that you can be your best for your child.

8. Your relationship with your spouse or significant other will be tested. It’s a well-known fact that men and women process these experiences very differently.  I wanted to talk about all of the possibilities, talk until things made sense, or simply talk for the sake of filling the silence.  Braxton’s dad was not a talker.  He’d listen to me for a little bit, but he’d almost always zone out or change the subject.  He dealt with this in his own way. He buried himself in work and in music. BUT, he was at every single doctor’s appointment. He learned how to use Braxton’s feeding tube.  He woke up in the middle of the night to change out the formula, change Braxton’s diaper, or simply rock him back to sleep.  We became so tired that we lost time for ourselves. We stopped talking to each other.  We argued about so many insignificant things that seemed important in the moment, but I cannot recall one life altering argument that impacts us today.  Don’t let that happen to you.  Make time for each other.  Get a sitter, respite nurse, or close family member to stay with your child so you can spend time together as a couple.  Have a date night and don’t feel guilty about it.  If all else fails, don’t be afraid to go to counseling and find each other again.  Do everything you can to remain a team, but just know that sometimes things don’t work out and that’s okay.

9. You will find your faith, or you might lose it.  I have seen both sides of this coin.  People who learn to see God in their lives through the miracle that is their child, and people who become so angry with God, that they begin to think that He is not present in their lives because of all the hurt and struggle they have faced.  We struggled with our faith and were very much tested spiritually, but eventually we did find our way back and began to see things much differently.   You will find your own path.

10. Understand that support is critical.  We become so wrapped up in caring for our children that we often forget about our own needs.  For so long, I thought I was doing just fine.  I didn’t seek out support groups because I didn’t think I needed any.  One day, I went to a meeting with a local non-profit for children with undiagnosed and rare disorders.  I was hesitant at first and almost cancelled, but reluctantly, I went.  That night changed my life and I didn’t even realize it until much later.  U.R. Our Hope was exactly what I didn’t know I needed.  I was able to talk to other parents who shared my experiences and truly understood my journey.  We talked about doctors and how they could have the audacity to make us wait in their office for 2 hours for a 10-minute visit! I learned about resources available to me that no one had ever mentioned before.  I became empowered.  I listened to other parents tell their stories of challenging the system and advocating for their children and was in awe of the people who were before me.  I found myself seeking out more virtual support resources as well.  We live in such a digital age and I am so grateful.  Virtual support groups can be just as helpful and fulfilling as face-to-face support.  Just knowing that someone out there “gets it” makes all the difference in the world.  Don’t be afraid to look for groups in your area and just jump right in with both feet.  You won’t regret it.

A Worried Mother11. Step away from the computer! There is only so much research you can do before you drive yourself crazy.  As you learn about new symptoms, new treatments, new possible diagnoses, definitely seek out information, but don’t waste all of your time on the Internet or in the library trying to memorize everything.  You will burn yourself out and miss out on precious moments with your baby.  You will also start to worry about things that might never happen.  Some research is outdated and does not paint a nice picture.  When we finally received our official diagnosis, I did some research and I did not like what I read.  By this time, I had started blogging about our journey and when I shared our results and my research, someone reached out to me and said, “Hey, my son has this same syndrome and I know many other people as well.” I immediately reached out and asked to connect with everyone.  I found a Facebook group and began to make connections.  I learned that some of the children were playing sports and doing some truly incredible things.  Many of the children were nothing like the research I had read.  Hope was restored. When you do research add “Parent support for” in front of the diagnosis and that will help you find the support groups or blogs or just real life people who will gladly share their story with you.

12. Don’t isolate yourself or put limitations on you and your child.  Unknowingly, we sometimes hold our children back because of our own fears.  We did not go out to eat for quite some time because we were scared of what people would say if we had to feed our son with his tube in the middle of the restaurant.  Only one of us would go to the grocery store or run errands because we didn’t want to interfere with a feeding time.  We turned down friends invitations for dinner and parties. We kept our older daughter from doing things because of her brother.  I quickly realized this was making her resent him instead of wanting to build a bond with him, so I had to find ways to give her the things she wanted so she could still have her ‘normal.’ You and your child deserve to do anything you would normally do if he/she did not have special needs.  Tube feeding in a crowded restaurant is totally acceptable. At the park? At a birthday party? At Church? Absolutely! Always try to place your child in the least restrictive environment.  Don’t feel like you can ONLY go to special needs parks or attend special needs activities.  Try the regular park, try a regular dance class or baseball team.  Sometimes all it takes is a few simple adjustments and your child is dancing and playing right next to his or her peers as they should be.

Choose Joy Everyday13. Always choose joy.  Joy is a choice.  It is a conscious choice that you have to make each and every day.  When you are going through a rough time, take the time to grieve, but pick yourself up and choose joy.  This whole experience is only as good as you make it out to be.  YOU control the mood and outcome.  The things you choose to focus on are the things that begin to consume your life.  You can choose to focus on the bad things that are happening, have happened or will happen, or you can choose to focus on the positive things that are all around you.  Take some time every day to think about the good things that happened and the things you are grateful for in your life.  Slowly, a positive attitude will come easy and choosing joy will become second nature.  And then something even more amazing will happen; the joy will pour out of you and into the lives of others! I know that right now, this seems ridiculous, but trust me, you will get here.  The fear and the sadness and the anger will subside.  Sometimes those feelings will come back, but every time you will be better prepared and you will notice you spend less time with those feelings and more time with joy and happiness.

Congratulations again on the birth of your beautiful child!  I know things are scary right now, but eventually everything will be okay.  Don’t be afraid to reach out to someone who has been in your shoes.  We remember what it’s like and we want you to stand beside us, so we will gladly reach out our hand to you and pull you up.  We will walk this path with you and help you find your footing.  From this point forward, you are never, ever alone.

All the best,

A-once-scared-NICU-mom-who-didn’t-feel-like-she-belonged-on-this-journey-either

 

//edit: After writing this letter, I realized that I left off one VERY important piece of advice for parents of children with congenital anomalies. It’s not your fault! Read more in my post “Letting Go of the Guilt.”

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Feeding Tube Awareness Week 2014!

FTA Week 2014This week is Feeding Tube Awareness Week!! I have not been as diligent this year in writing as I was last year, but that doesn’t mean that FTA Week is not important, because it is! We proudly celebrate our tubie love.  Since I did not keep up with the daily topics, I’m going to do one post to catch up for the week. This will help me keep my answers short and sweet (ha, right!?)

Let’s do this.

Day 1: Share your Feeding Tube Awareness Week video and story.  

We did not make our own video this year, but we were a part of the video created by The Oley Foundation which celebrates people of all ages with feeding tubes! The theme for this year’s FTA Week is “Nothing Can Hold Us Back” which is clearly evident in this video.  Enjoy!

Most of you know our story, but if you are new, the short version is that Braxton aspirated at birth so it was not safe for him to breast or bottle feed.  Aspirating means that you are swallowing fluid in to your lungs instead of your stomach.  Braxton also had very poor coordination and low muscle tone in his face so he simply could not eat enough to sustain his weight.  At 2 weeks old, Braxton had surgery to have his G-Tube placed.  He quickly began to thrive and finally was sent home from the NICU the next week.  We have worked very diligently with our Speech Therapist on feeding and we are just now, at 2 and a half years old, seeing real success.  Braxton is eating pretty much all of his food by mouth now and we are only using his tube to give him water to keep him hydrated and supplementing his feeds just to make sure he is getting the calories he needs to maintain his weight and gain appropriately.  For more information you can read our post from Day 1 of FTA Week 2013 or get the full scoop on the Day Braxton Became a Super Tubie.

Day 2: Share your tips for feeding on the go or in public!

The best tip is: your kid HAS to eat no matter where you are so don’t be afraid to pull out your tube and feed your child! We were so scared in the beginning about what people might think of us or Braxton when they saw us using the feeding tube.  Would they think he was chronically ill or contagious? Would they think we were bad parents? That we MUST have done something for our child to be this way? It took a while for us to be comfortable with public tube feeding, but now it is really no big deal.

We have fed in restaurants, in doctors offices, while on a road trip in the car, at the park, anywhere! We always made sure we had the supplies we needed and we kept a few extra in the car, just in case! We were given a backpack from our medical supply company when Braxton first had his tube and required a pump.  It was easy for us to set up the feed and just go about our business.  We could go to the mall or the zoo and his backpack would hang on the stroller as the pump ran.

In the beginning, Braxton’s feedings were about an hour long and eventually decreased to about 20 minutes.  If we were going to be out long enough for two feedings, we kept the 2nd feed cool in a lunchbox or lunchbag with an ice pack.  We bought a portable bottle warmer for the car so that we could heat his food up on-the-go.  Many times, we would arrive at a restaurant and ask them to bring us a cup half-full of hot water and we simply placed the bottle in the cup to heat up.

Always plan ahead.  Think about where you are going and what you will need. An extra syringe? An icepack? An extra feeding bag? A change of clothes just in case the food doesn’t stay down? Make a checklist if needed, but eventually, you learn exactly what you need!

Day 3: Show how tube feeders can do what they love to do.

This was another thing I was worried about when we first got our feeding tube.  I wasn’t sure exactly how this might affect Braxton’s development.  I remember asking the doctor if he would be able to learn to crawl or have ‘tummy time’ since his tube was right in his abdomen.  The doctor assured us that it would not be a problem, and it surely wasn’t! Braxton didn’t crawl until he was about 15 months old, but once he figured that out there was no stopping him! Braxton quickly began crawling lightning fast.  One minute he was in the living room and the next he was in the kitchen pulling tupperware out of the cabinets.   We also worried about bathing and swimming.  I asked if we needed to cover his tube every time he bathed or avoid the swimming pool.  Again, the doctors assured us that he would be just fine.  So far, Braxton has not been limited in any way because of his tube.  He is thriving!
Here are some pictures of Braxton just being a regular kid!

Day 4: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Support! We became involved with a local support group and met other families whose children are also tube fed.  Seeing and truly understanding that we weren’t alone was a big help to us.  Connecting with virtual support was also helpful.  Groups like the Feeding Tube Awareness Foundation really helped us understand that we were not the only family with a child who needed a feeding tube.  We have really learned to love and appreciate the tube for a number of reasons.  When Braxton would get sick often, we didn’t have to worry about him dehydrating or not eating because we could simply feed him with his tube and adjust the speed as needed.  Using the tube for medicine has also been helpful, because making a child take medicine by mouth is no simple task! As we learned more and met others the ‘stigma’ went away.  Now, Braxton’s tube is as much a part of him as any of his limbs! At the end of the day, the tube kept Braxton alive and we are forever grateful for that.

Day 5: What are your tube feeding hopes and dreams for you or your child in 2014?

Yummy in my tummy!

Yummy in my tummy!

Well, of course, we hope this is the year we have a tubie graduate! Yes, we are thankful for his tube and we have learned to appreciate it, we would love for Braxton not to depend on it so much.  He has recently made some really amazing progress eating by mouth and we are so excited! The next step is getting Braxton to drink by mouth.  We are working on straw drinking from a cup and so far Braxton is doing well.  He has drank up to an ounce of water in therapy taking small sips from a honey bear type sippy cup.  I tried some apple juice and Braxton was not a fan! We will need to work on flavors and temperatures before we can get graduate from the tube.  I’m very happy with the success Braxton has made and cannot wait to see what he accomplishes this year!

 

Day 6: Share the tubie love! Share pictures of you or your child living life to the fullest. Today is about living and loving life.

This one is easy.  Just glance through any of our photos on our Facebook page and you will see that nothing holds this kid back! Braxton is so full of life and love and happiness.  His joy simply pours out of him and into the lives of others.

Day 7: Share your favorite Feeding Tube Awareness Week post, photo or video.

I think I just did! I was not able to keep up with the daily topics this year, but I think this “catch up” post is perfect for FTA Week.  This captures all of the incredible things Braxton has been able to accomplish because of his tube and shares our story.  Thank you to all of the people who shared our photos throughout the week and our posts from last year.  We are looking forward to an awesome year!

FTA Week 2014

 

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