Archive for ‘Microcephaly’

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!!!

Image

Advertisements
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!

 

December 8, 2011

Back again

We were back at the hospital this morning for one of Benja’s clinics. Love this hospital and love this team!
Benja is growing well – up to 26lbs today! He was 19lbs when he came home two months ago. That is just incredible!
Everyone is excited about how much progress he’s making in a short amount of time. We still have some continued concerns that haven’t yet been addressed (we’re working on it!) but he’s doing so great.

One more appointment at the hospital this month (that we know about now) then hopefully a break until after the new year. Whew!

This is how we all feel…. :)

October 21, 2011

Update on Benja’s medical “stuff”

Whew – we had a DAY today!

We left town early to get to the children’s hospital to do more of Benja’s medical evaluations.

First thing first was an upper GI.  Keith got up extra early so he could give Benja an early breakfast, as he wasn’t allowed to eat for four hours before the test. Benja smiled and laughed all through the test and (of course) charmed all of the folks in the room.   We got the news that all looked good and his insides look normal.

We were then off to meet with a new clinic called  the Complex Health Care team.  This new clinic was designed specifically to work with kids with multiple special needs that need to see multiple specialties.  They were amazing!  I am so grateful we got put in touch with these folks.   They were so kind and truly seemed interested in Benja and spent the morning and much of the afternoon talking to us, working to find him appropriate services/equipment, setting up appointments, answering questions, etc.   Just kind, helpful people, all of them.   In addition to the doctors and nurses, we met with the social worker for the clinic who is helping us connect with our local home health agency who will be delivering supplies for the children as well as the nutritionist who is helping us figure out how to help Benja get the proper nutrition.  We left with a prescription for Pediasure Enteral which we plan for him to be on indefinitely until he can get enough nutrition orally.

After the upper GI came back as normal the Complex Healthcare team was able to get the GI surgeon to squeeze us in for an evaluation.  We ran upstairs and had a consult with the surgeon to determine if Benja could get a G-tube.  The surgeon decided that yes, Benja was a candidate for a g-tube and we were put on the schedule for surgery next week!  There are still a few concerns/unanswered questions before his first surgery.  The first being his heart – he will go to be evaluated by the cardiologist on Monday to make sure his heart will be OK for surgery.  The second is his jaw and how they will handle the anesthesia.   As time goes on we are realizing that Benja doesn’t simple not want to open his mouth, he really isn’t able to.   One of the doctors today worked pretty hard trying to get his jaws to open enough to look inside when we all realized it was causing him a lot of pain and wasn’t going to happen.   So dealing with anesthesia might be more complicated than it normally would.  They believe that the anesthesiologist will be able to figure it out though and that it shouldn’t cause a delay in the G-tube, as long as the cardiologist gives the OK.

After the consult with the surgeon we headed back downstairs to complex healthcare.  We were able to discuss and get a demonstration on the g-tube, get some more tape and syringes for the NG tube he currently has and to received several more appointments with other specialists.

He will be seeing the craniofacial surgeon in early November as well as the neurologist in December.  We’re trying to get neurology moved up to earlier though.  Benja is displaying what the doctor seemed to think is a neurological tic in addition to his microcephaly/suspected craniosynostosis and its something I’d rather get checked out sooner than later.  The doctor started throwing out words like “brain not growing” and freaking me out but he assured me that while a small brain isn’t good, that function is more important than size.  Benja is significantly developmentally delayed but he is certainly making progress and catching up, so that is what we are focusing on right now until we get more answers.

Today as I sat and watched the doctors evaluate Benja I was just blown away that this is the baby that I met 16 months ago, the baby that we prayed and fought for is actually here and getting the medical care we were so desperate for him to have.

This sweet baby and his whole story is such a miracle.  It’s a miracle he’s even alive right now – that he survived those first two months before he came to the orphanage, that he didn’t die his first year with so many medical problems – so many people didn’t think he would make it – that he was even able to be adopted at all and that he is here now and a part of our family.  Such a miracle this boy.  I know he is going to just blow us all away with the progress he’s going to make.

Some of my favorite “baby” pictures of Benja!

October 16, 2011

Update time…

I wanted to tell you all a little bit about our new babies and an update on how things are going.   I know I haven’t given a lot of information yet.   Due to the whole climate surrounding adoptions in Uganda, I kept a lot of the details private.   Now that we’re home I can start to share a little more about our new little ones!

Benja is our new, amazing, sweet little son.  He is 18 months old and just a love bug!    Our little Benja has been a bit of a medical mystery.  He has so far been diagnosed with microcephaly, Pierre Robin Sequence (with related cleft palate, small/malformed mandible, and retraction of the tongue), microtia (underdeveloped outer ear) a VSD heart condition and is significantly developmentally delayed.   He has been tube fed since he was a young infant and is still only fed by NG tube.  The orphanage where he lived thought he was going to die multiple times.  His first year or so was very rough but thankfully he is doing much better, is stable and making progress developmentally.  Benja is scooting himself all around and wants to crawl.  He has started trying to pull up on tables/couches and is putting much more weight on his legs.  He bounces and screeches when he gets excited and will clap his hands.  He has the most adorable little smile and charms everyone that meets him. He loves to throw toys and to put blocks or toys in and out of boxes or cups.  He loves plastic cups and will play with one for hours.  He  enjoys watching Baby Einstein DVD’s, diaper changes, grabbing whichever sibling gets closest to him and trying to pull out his NG tube.  Benja is very much still a baby.  His developmental testing placed him at 8 months old. We are confident that with the proper medical care and the love and support of a family he is going to make amazing progress.   Benja is being admitted to our local children’s hospital tomorrow for some intensive testing and diagnostics.  We are hoping to find out what the plan is for the various surgeries he needs and hear what our options are.  Benja will start physical, occupational and speech therapy soon as well.

Jovia is our gorgeous little princess girl.  She is 18 months old as well and is a diva!   Jovia was born a congenital quad amputee (she has no arms or legs) but she one determined little girl and she doesn’t let her lack of limbs slow her down!  She rolls everywhere she needs to go, and gets there quickly!   She can pick up most items by gripping them between her shoulder and chin.  She uses her arm stumps to push buttons, play the piano, turn pages in books and give high fives.  She amazes everyone she meets by how resilient and resourceful she is.  Jovia is learning to sit up on her own and practices every day.  She enjoys sitting in the exersaucer and pushing the buttons to get sounds.  She loves phones, playing the piano, books and shoes.  If your shoes are near, Jovia will get them and put them on her arms.   She loves to play peek a boo and to be tickled.  She can be shy with new people but once she gets to know you she is a silly and loving little girl.  She is terrified of doctors and of animals.    Jovia is talking a lot now and new words are coming out every day now that we’re encouraging her to use words when she wants something.

We plan for Jovia to be followed by a nearby Shriners hospital which specializes in children with orthopedic issues.   We hope that she will be able to get prosthetics at some point and look forward to finding out what equipment we can provide for her to help her become as independent as possible.  We know that she is going to do wonderfully – she has such spunk, determination and is such a joyful child.   Jovia will start physical and occupational therapy soon.

These babies are so amazing and we are thrilled they are now apart of our family.   The idea of adopting two special needs babies was obviously overwhelming, and frankly even scary at times.  We knew we were supposed to do it, but that doesn’t mean we didn’t have our doubts as to how we would actually be able to do it!   Those fears seem to have just faded away and we are so grateful for how well everything has gone so far.  It has really felt quite easy (minus the medical aspect and the stress of being in Uganda!) so far.  Yes, everything takes twice or three times as long but other than that, these are some very good, easy babies.  Mayer has his moments of jealousy, but he has been a dream big brother and is adjusting beautifully to having to share his parents with two new little ones.  Being home with our three babies seems so natural and we are feeling so very blessed.

A full car.   My first time out with all of the little ones today.  We were stopped twice in the parking lots before we could even get into the store to tell me I had my hands full and talk about our family.  Is this a sign of whats to come?  I can’t imagine what people with really large families have said to them.

 Hanging at the doctors office, waiting for the doctors to come in.  

Pull out my NG tube?  Who, me? 

Aww

Oh, its good to be home!