Archive for October, 2011

October 30, 2011

Benja’s Gtube Surgery

Yes, I’ve been MIA for a bit.  But for good reason.  Our little Benja boy had g-tube surgery on Wednesday!

 Yay for no more NG tubes!  

We went in on Wednesday afternoon, he was in surgery by shortly after 4pm and we were in our room around 7pm.

The anesthesiologist has some fairly significant concerns about intubating  our sweet boy due to his past airway issues and his current jaw issues.  I think I’ve explained before but we have never been able to get Benja to open his mouth more than a few millimeters.   We have questioned whether he was refusing to open his mouth or if he truly wasn’t able.

The anesthesiologist thought that once he was asleep and was completely relaxed his jaw would just open more automatically.  After surgery the anesthesiologist explained that even under sedation, his jaw wouldn’t open any more than usual.  So, we now know that he has isn’t able to open to mouth more than a few millimeters.  They had to use some sort of special scope/camera to get him intubated and from what we’re told, it was fairly complicated.  But they did a great job and the actual g-tube surgery went very well.

Benja was pretty uncomfortable the first night after surgery but started feeling better really quickly.  By 2 days post op he was crawling around and acting like his regular old self.   His belly is still a bit sore of  course but we’re shocked how quickly he’s bounced back.   We came home Friday afternoon and so far everything looks to be healing very well.

We’re currently feeding him with a pump and working him back up to a regular feeding schedule.  He’s done OK so far though had a period of vomiting today.  We’ll take a step back on how much he’s getting and try again.   Besides that though, he’s done amazingly well and we’re so thrilled that NG tube is gone.  This little guy is such a trooper!

Before surgery.  

Right after surgery.

Poor little love. 

Bouncing back. 

Happy to be home!

Two days after surgery:

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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!

October 11, 2011

WE ARE HOME!

Thank God, we are home safe and sound.

Everyone is doing well.  We’re all dealing with our colds and trying to get adjusted to the new time zone but other than that, just HAPPY.

This morning was spent playing, cuddling, unpacking, getting caught up on a few things and figuring out some of Benja’s medical stuff.

We’ll be taking the week to relax, see family and friends and start our new lives as a family of five here at home.

Thank you so much for all your prayers and thoughts these past few weeks.  It means so much to us.

October 8, 2011

Protected: We are coming home!

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October 7, 2011

Protected: So close…

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October 4, 2011

The Announcement!

We are officially a family of five!

Benja and Jovia are now officially “ours” and we can share them with the world!

Do we have beautiful children or what???

Please keep praying.  We are so close to bringing our children home.

October 2, 2011

Protected: Surreal.

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October 1, 2011

Protected: This week…

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