Archive for ‘Pierre Robin’

June 19, 2013

Benja loves his “Signing Time”

As many of you know, Benjamin has hearing loss.  He is deaf in one ear (the ear with microtia) and has moderately severe hearing loss in his other ear.  He wears a Cochlear Baha hearing aid with headband.  When he’s about 5 or so they will surgically insert a cochlear implant.

In addition to having hearing loss, Benjamin has a craniofacial condition that essentially “locks” his jaw shut.  He can open his jaw a few centimeters.  He also has a large un-repaired cleft palate.  These things combined means that Benjamin is mostly non-verbal. He attempts to speak (makes sounds) but no words actually come out.

We began introducing ASL to Benja in the form on baby signs shortly after he came home.   We did this through the book and DVD system “Signing Time”.   I can’t recommend this program enough.  The videos are so informative while at the same time very entertaining.  Benjamin happily sits and signs along during his daily Signing Time.  He loves it!   He now has a vocabulary of about 10 signs he does regularly on his own and a handful more he does when prompted.  Believe me, the difference between no language and being able to “say” 10 different things is huge!  We have seen such a decrease in his frustration level now that he’s able to tell us what he wants.  And the best part is, he really WANTS to sign!  He makes up signs constantly (babbling in sign, so cute!)  and seems eager to participate when we try learning new words.

I wanted to share our success so far with Signing Time and recommend it to anyone who is looking for an easy and fun way to introduce ASL to your young child.  We couldn’t be happier with it.

Benja signing time from sister haiti on Vimeo.

April 20, 2013


If you’ve ever wondered what a living, breathing, WALKING miracle looks like….well, here he is! 

Benjamin took his first unassisted steps today!

No walker, no braces.  Just walking.

Two years ago very few people thought this would ever be possible.

God has done such amazing things in this little boys life. We are so, so grateful.

He’s going to be running all over the place soon!

Go, Benji, go!

Benji Walking from sister haiti on Vimeo.

April 3, 2013

Communicating with Benjamin

I feel like we’ve finally hit a long awaited breakthrough with Benja.  He’s trying to communicate with us so much more than he used to!

For example, this afternoon he waved “hi” at me when I went into get him up from his nap.

As I was changing his diaper he signed “eat” and “said” yes (this sounds like a grunt but we know what he means) when I asked if he wanted a snack.

When he was done eating he signed “all done”.

He then signed the word socks” and crawled over and sat by his socks and shoes signing “socks”.

After I put them on he went to the TV and signed “Yo Gabba Gabba” and then pointed at the TV.  He started squeeling and laughing when I turned it on.  I asked him if he was happy and he signed happy!

He’s changing so much!  Actually seeing him tell us what he wants instead of tears and frustration…I can’t tell you how good that feels.

Go, Benji, go!!!


January 16, 2013

Benja medical update

Yesterday morning Benjamin was sedated at the hospital for some more testing of his jaw issues.

For those who are new to my blog or don’t know – Benjamin was born with Pierre Robin Sequence. Pierre Robin causes an abnormally small jaw, large tongue set far back in the back of the throat and breathing difficulties.  He has a very large cleft palate.   In addition to his tiny jaw it became clear when we adopted him that he couldn’t open his mouth very far.  Just a few centimeters.  From what I can tell this isn’t a Pierre Robin issue but something different.  He has been examined many times by many specialists to try and determine what they are going to do to fix his jaw.  He for sure needs a distraction (google it – ouch) but they haven’t been able to figure out exactly what is causing his jaw to be stuck in the shut position and how to fix it.

So yesterday they hoped to have our answer after they examined his jaw under sedation.

The surgeons came back after they were done and shared with me that they are about 90% certain that it is a problem with his condyle.   There is a 10% chance it is a problem with his coronoid.  (you can google pictures of those if you want to know what they are – I had to.) Since they aren’t 100% sure (and they are very different surgeries and procedures to fix them) they want to wait and have him seen by another specialist in July (yes, July) who has just been hired by our hospital.  Our main surgeon (who I really like) assured me that if it was his child he would wait until this specialist could see Benja and be involved in the surgery.

I told the surgeons I wasn’t in a hurry for him to have surgery (what mom is?) but I do want him to have the best chance possible to learn to talk (if he’s able) and chew.  I just feel like the longer he isn’t able to do these things the harder it might be for him to learn them later.

They did say that they think they can do the jaw condyle or coronoid surgery at the same time as putting in the mandibular distractor so that would mean (hopefully) only one jaw surgery instead of two.

So we got some new information but now we’re back to more waiting.  They told us one of the defects is an “easy fix” and the other is a “serious surgery” and if he does indeed have a problem with that part of the jaw he’ll need extensive follow up care and possibly more surgeries as he grows.  We’re hoping it’s the “easy fix” problem but prepared that it may not be.

Thanks for thinking about and praying for our little guy.  Benja, of course, charmed all the ladies he encountered and we got to share our story (and talk about special needs adoption) with several sweet nurses who were very interested.  One asked me to email her more info!  Maybe another precious little one will find a family through all this??  :)




October 2, 2012

Benja’s Eating Update

It was almost exactly a year ago that I was in Uganda trying to convince 18 month old Benja that having something {anything!} in his mouth was OK.   At that point anything you tried to put near his mouth (your hand, a spoon, toothbrush, etc) was pushed away violently.  If you insisted he would throw himself backwards, shaking his head back and forth as fast as possible and start to cry.  He would do anything  to keep whatever you were offering away from his mouth.

Shortly after we came home we notice he started putting toys up to his mouth.  But only if he did it himself.   I spent time every day forcing my finger into his mouth to massage his gums.  His dentist shook his head, muttering under his breath that he couldn’t believe that Benja kept his mouth so clamped shut all the time that most of his teeth have never been given a chance to erupt.  “Do what you can to get him used to having things in his mouth…” the doctor told us.   They tried to pry his mouth open at one point at the hospital.  It was then that we realized we were dealing with a bigger problem – that it wasn’t that he wouldn’t open his mouth, he couldn’t.    It only opened a few centimeters.

So I kept at it.  Massaging his gums, encouraging him to make sounds and move his mouth, clapping and cheering when his tongue ventured past his teeth to test the taste of a new toy.   We started to notice him opening his mouth more and more.   And then he realized he loved the taste of icing.  So if we put our fingers in his mouth with something sweet he would allow us to keep doing it over and over.

A few months later he discovered that baby food on a spoon was pretty yummy.   That was the start of his love affair with food and the end of his oral aversion.  Now anything and everything that can be eaten off a spoon is taken happily.  Just the sight of spoon gets him excited.  And holding a spoon, even with nothing on it, is one of his favorite things to do.  He can now open his mouth wide enough to stick a small finger between the top and bottom jaw.  A spoon still wont fit between his teeth but if you scoop the food under his top lip he has learned to suck it down quickly.

He even lets us brush his front teeth now.   And enjoys it!

A few months ago I started seriously trying to get Benja to feed himself.  He’s started eating small melt-away yogurt snacks that I push between his teeth and onto his tongue.   I’m hoping he can master picking these snacks up on his own but we haven’t gotten there yet.

We’ve also been slowly introducing him to the idea of feeding himself baby food with a spoon.

It has been slow going.  For months we’ve worked on this.

Last night, like I have a hundred times in the past, I put him in a highchair with a tiny bit of applesauce in a bowl in front of him.   I took a hold of his hand with the spoon in it.  Over and over again I dipped the spoon into the food and guided his hand to his mouth.  Then I let go.   And guess what?  HE KEPT GOING!   He fed himself the rest of that bowl and then I gave him some more and he fed himself that one too!

Look at him go!  PROGRESS!!!  So proud of our baby boy!!

IMG 4263 from sister haiti on Vimeo.


June 8, 2012

Look at him go!

We are watching miracles unfold here one after another! 
I can’t wait to get his walker – Benja’s going to take off!    

Benja Walking from sister haiti on Vimeo.

May 19, 2012

Benja’s EEG/MRI update

We got notice that Benja’s EEG and MRI show a NORMAL (though still small) brain!  YAY!!

No signs of seizure activity so we’re assuming at this point that his previous seizures were febrile seizures.

This is such a relief!

We have an appointment with genetics on Monday to find out the results of his genetic testing. Then in June we go back to the craniofacial surgeon to talk to him about his plans for Benja’s mandibular distraction and cleft palate repair. We are also waiting for a call back from audiology about a more thorough hearing test and possible hearing aids.

Benja got AFO’s and a standing frame and is currently working on putting weight on his legs with hopes that he’ll show interest in standing and eventually walking.   We’ve been joking that he’s going to be a hurricane once he is walking.  He is already such a handful!

We’re having so much fun watching this sweet boy grow and develop!




April 29, 2012

Benja’s EEG/MRI/CT

Just an update on Benja’s continuing medical evaluations. 

He recently had an EEG.  It was at noon and they wanted him to nap during the test.   Benja and I looked at the technician like she had four heads when she asked if he was ready to sleep.  In a room with three people, a TV, multiple computers,  in the middle of the day, strapped to a board with a gazillion wires coming out of his head.   Right.    I told them there was no way he would go to sleep.  So they did the test while he was awake.   She said they got what she needed so hopefully it was OK.    He was strapped down for probably a total of 2 hours.   About a hour to get all the wires stuck to his head and then another 20-30 minutes for the test and another 20-30 minutes to get them all off.   He wasn’t crazy about it but did OK.   They did a really poor job of getting all the glue off his head and two hair washes that night didn’t get it all off either.  Finally some baby oil and a good comb through got it all off.   Now we’re waiting to hear the results from the neurologist.

We spent that night near the hospital in a hotel because we had to be at the hospital at 7am to get checked in for his MRI/CT done under anesthesia.    I hate when he has to be intubated.   Because of his jaw/airway issues they make a huge deal about it at the hospital with multiple anesthesiologists, lots of questioning and discussing, explaining the increased risks, the difficulty of intubating him, etc.    It all makes me nervous.    I sat in the surgery waiting room for several hours while he had the tests done and then a nurse came out to get me.   She said “Is Benjamin your baby?”  I told her yes and she said “Girl, you have THE CUTEST baby!”   I agreed.  When I went back to see him the nurses were passing him around the nurses station.  :)   They said he did great waking up and besides a sore/scratchy throat and being tired the rest of the day he was great.   Now we’re waiting on the craniofacial surgeon to call us with results of the MRI/CT and let us know if we can schedule his jaw surgery!

March 21, 2012

Benja’s evolution of eating…so far….

If you’ve been following along with Benja’s medical saga you’ll recall that he is exclusively tube fed and has been diagnosed with an oral aversion.  I’m no an expert on oral aversions and while the doctors tell me he had a pretty significant aversion, I think Ben was much less likely to cooperate with them, so it seemed worse in the doctors offices/hospital than it did at home.   When we got him he greatly resisted having anything put in or near his mouth.  The babies home told us he had been “eating” baby food but unless we held his head and forced food into his mouth, he wasn’t eating.   I had been doing some research on children with oral aversions and decided to take a big step back and start over.

We started with just getting him used to having people mess with his face.  I tried to spend time every day, several times a day playing with his lips.  He didn’t like it and for a long time really disliked anyone messing with his face/mouth at all.   His therapists here say he’s “defensive”.   He still (although much better) initially startles and jerks away when you do anything with his face/mouth for the first time.

Anyway, so we started just messing with his face/mouth as much as possible.  I gradually started sticking my finger in his mouth and for several months I did this a lot!    He went from hating it, to accepting it, to actually liking it.  I would rub his gums which he really seemed to like after he figured out it wasn’t going to hurt.   We gradually started to notice that he had begun willingly putting toys up to his mouth, rubbing them on his lips.  Then he started putting them in his mouth and rubbing them on his teeth.  We started offering him things on our finger like frosting, syrup, jelly, juice, etc.  He was still very hesitant at first and would take it then jerk away quickly.  Soon we noticed that he would lean forward when we offered something tasty on our finger and come back for more.  We would often offer him a spoon but he would refuse to have anything to do with it and would jerk away and purse his lips.

About a month ago I was sitting on the floor feeding Jovia some peaches and Benja crawled up to investigate.  I, like we often did, offered him a bit of peach juice on a spoon.  He leaned forward and put his lips on it!  He immediately jerked away but then turned back and leaned forward for more!   Jovia and I cheered and were so excited!

The next day I mixed up some very thin rice cereal with apple juice and warmed it up.  I offered it to Benja and he refused.   I put a bit on my finger and offered that.  He accepted it so I tried the spoon again.  And he ate it!   And he kept coming back for more!  Benjamin was eating!

Since that time about a month ago Benja has been eating baby food regularly once or twice a day. He eats a bit differently, because his jaw is fused shut we scoop the food underneath his top lip and he sucks it in and swallows.   He also still has his enormous cleft palate and a ton of food comes out of his nose, but he is still getting quite a bit of  food down.  We’ve noticed his poo changing now that he’s getting something other than just Pediasure and I bet the next time we go to the doctor they will notice even more weight gain.

We are so proud of our funny little man.  He has come so far.  His pediatrician joked that he’ll be eating pizza in no time!

January 12, 2012

Benja Update

Benjamin saw his neurologist for the first time a few weeks ago.  It was a much anticipated appointment and we’ve been anxiously waiting to hear what the doctor had to say.

He started with general questions about Benja and reviewing his medical history.   He was very familiar with Uganda, having spent time there apparently, and very interested in Ben’s story.  He did some tests which he told me were to look for signs of brain damage.  Thankfully he said he saw no outward signs of damage.  He examined Benja’s head and told us that his while his sutures are completely closed he didn’t seen any current signs of craniosynostosis that would require surgery.   He has ordered some scans of his head to look for abnormalities of the brain.  We hope to have those done soon.   He said our concern at this point is whether or not his brain is growing.  He has fairly significant microcephaly, which we’ve known for a while.   If his head has indeed stopped growing there is really nothing we can do.  He may always be delayed but just because a person has a small brain doesn’t mean they aren’t smart or aren’t able to continue to develop.
On the other hand, if his brain is still growing we watch for signs that his brain is outgrowing his head, in that case it might require surgery.  He pointed out that a small brain isn’t the end of the world and since he has already made such big improvements we have no reason to believe he won’t continue to improve developmentally.   The doctor wasn’t at all willing to talk about what the future might hold for sweet Benja but said all we can do is wait and watch (and pray!).

We also recently had an appointment for Benja to be evaluated by a urologist.   The last several checkups he’s had they had been unable to find his testicles and we were looking at possible surgery for undescended testicles.  The last thing we wanted was to end up with another surgery!   We are so excited that the urologist was able to locate one testicle yesterday!  That means no immediate concerns!  He has another urological issue that will need to be addressed at some point but they think it is something they will be able to do while he is already scheduled for another procedure and won’t mean an additional surgery.   Happy news.  :)

So that’s a small update on where we are with his medical stuff.
He’s doing great and we’re so in love with our baby boy!