Haiti's Given Son

Happy New Year!

2012-01-03T16:58:00.010-06:00

Yes, I have been completely remiss

in updating the blog.

I am hearing from Givenson's loyal fans

that updates are needed.

I will make it a New Year's resolution

to try to sit down and post more often

about all of the amazing progress

our little guy is making!

Quite frankly, he is doing so well,

I rarely have time to sit down at all!

For now, here are a few pictures

of Mr. Wonderful to tide you over

until I can more officially update.

Hopefully you agree that a picture is worth

a thousand words.....

Halloween 2011

and with the best big sister a kid could dream of.....

"Bird Baby"

2011-09-03T09:41:00.016-05:00

We were so blessed this week to be contacted

by a lovely young blogger who we have never even met,

that wanted to support our adoption!

Yes, if we haven't "officially" shared the news with you,

we are in the process of adopting Givenson!

Clearly he has made his way into our hearts

and our family would simply be incomplete without him.

As I was looking at the wonderful items

sold on Home for Hire, I was drawn

immediately to the sweet little birds - in singles

or in pairs (and feet or no feet!)

( photo courtesy of www.etsy.com/shop/homeforhire.com )

They reminded me of the nickname we use

every time we share Givenson's original admission

photo from the orphanage in Haiti -

"Bird Baby"

He was SO tiny when he first arrived - he

reminded me of a little bird in the nest.

He has come a LONG way since his Bird Baby days,

but we will be buying one of these sweet little birds

to remember his sweet, humble beginnings.

Now I just have to choose a color....... :0 )

Maybe you need a little bird too??

Thank you, Nicole and Home for Hire.

You bless us with your heart for adoptive families.

www.homeforhire.blogspot.com

Please consider one of the many handmade or upcycled items from

www.etsy.com/shop/homeforhire

or Nicole's previous Etsy store where bargains can be found at

www.etsy.com/shop/dulcitaslittlesweets

(don't miss the 50% off coupon!)

It looks like she takes requests too, if you need a little bird or other

treasure to specifically match your decor!

25% of her September profits will support Givenson's adoption!

Success!

2011-08-20T23:19:00.007-05:00

Givenson's surgery went extremely well this week

and he is recovering very happily at home.

(he matches his chair!)

After a lot of discussion with G's medical team,

it was decided that we did not need to

remove the mass in his abdomen at this time.

It seems to be doing absolutely nothing

(not growing, not changing, not causing any symptoms)

and it is in a rather precarious place, positioned

tightly between his only functioning kidney and his spine.

We all felt that the risk of injury to adjacent organs

was too high to justify an attempt to remove

something that seems to be quite benign and is

causing no problems.

So the surgery became a "simple"

nephrectomy rather than the more complex

coordinated procedures we originally

anticipated. Givenson went off to sleep very

peacefully in my arms, the surgery went

very smoothly and he woke (minus one kidney)

and recovered without any complication.

Whew....

I even got a chance to see the kidney

once it was out! It looked nothing like a functioning

kidney should. So much so that when G's surgeon

showed it to several other docs, none of them

could identify what body part it was!

It was definitely confirmation that the kidney was

serving no purpose in his little body

except to potentially cause hypertension

and harbor bacteria.

We are grateful that it is out and that the

procedure went so smoothly!

We were actually discharged just 24 hours

after surgery as he was doing so well,

and always perks up so much faster in the

comfort and familiarity of his own home.

We continue to be amazed at the skill

and compassion of the surgeons, physicians,

nurses and staff at Mayo. They were all

blown away by how much Givenson has

grown up these past few months.

It was a real treat to be able to "show him off"

to the many people who have come to know

and love him over the past 18 months.

Thank you for all of your prayers for

this surgery. We could not have asked for

a better outcome!

More Surgery

2011-08-16T10:42:00.003-05:00

It has been WAY too long since we've updated the blog, but the good news is that there just hasn't been that much news lately! Givenson has been doing really well!

He is walking and running and even jumping now. His sign language

has really progressed and he is so eager to communicate with us!

He remains a very joyful little guy with a great sense of humor and adventure.

(so much so that he drove himself right off the front steps on his bike this week!?!)

We are off to Mayo again this week for some more surgery.

The plan is to remove Givenson's right multi-cystic dysplastic kidney

(it has no function, but may be harboring bacteria)

and the mass growing near his adrenal gland.

We're not sure how extensive the surgery or recovery will be. It depends

a lot on what they find once they're in there. There are two surgeons

teaming up for these procedures.

Surgery is scheduled for Wednesday, August 17th and prayers

are appreciated for a successful outcome and a swift recovery.

Those big eyes....

2011-03-02T22:31:00.008-06:00

have a big job!

It occurred to me that we never really gave an update

on Givenson's hearing loss. With so many unexpected

things coming up over the past few months, I guess we

overlooked a few updates on the ongoing things like

hearing.

As we have shared in previous posts, we sensed

very early on that Givenson's hearing was either

totally absent or significantly compromised. He didn't

have the responses to sound that you would

expect from a child. There was no reaction to

a blaring smoke detector. No interest in the sounds

that toys made. No response to speech that was out of

his range of sight....

Early testing revealed beautifully functioning outer

ears, but profoundly abnormal results from

hearing tests in the "sound booth" and brainstem

response tests under sedation.

His scores were consistently "0". "How much does

he hear?", we asked... He hears nothing.

It was thought that he may have a condition called

Auditory Neuropathy - a fairly new discovery in

the ENT world - where the outer ear does not

correctly signal the auditory nerve to send

sound messages to the brain. In essence, the

condition is like having a faulty wire in your

sound system.

We learned that he might be a candidate

for hearing aids or for cochlear implants which

could bypass this "faulty wire" and send signals from

an external processor directly to Givenson's

auditory nerves. Or we could choose sign

language as his primary mode of communication.

And so, we began the journey of hearing loss.

We met wonderful people in the early intervention world.

"Choices in Deafness" replaced the usual novels

on my nightstand. We watched promotional videos

from cochlear implant companies. We started learning

sign language. We worried. We considered.

We prayed....

In preparation for the possibility of implantation,

Givenson had another MRI to study the inner structure

of his ear canal and to specifically

locate his auditory nerves. Which weren't there...

We know now that Givenson was born with yet

another congenital birth defect.

(we're up to 30 for those of you trying to keep track!)

He has bilateral (both sides) absent VIII / auditory nerves.

It appears from the MRI that his auditory canals

are absolutely tiny...almost non-existent.

Normally, that canal would house three separate nerves -

the auditory nerves are the largest, then the vestibular

nerves which affect balance and the facial nerves which

allow the face to have movement and expression

and can impact swallowing, etc.

Empirical evidence would say that there is some form

or facial nerve present, even though nothing can be seen

on the MRI, as Givenson is very expressive and has

never lacked any facial mobility. It is tough to say

if the vestibular nerves are present or absent, but

a person can function very well with or without those

nerves so that was not a critical diagnosis.

But without auditory nerves, there is no way to get

sound information to the brain. Hearing aids won't

do it. Cochlear implants won't do it.

Givenson is profoundly deaf, by loving design,

and will be Deaf all of his life.

“For YOU created my inmost being; you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful I know that full well.” Psalm 139: 13-14

When we brought Givenson in for this MRI, and when

we were wrestling with all of the decisions before us

regarding the choices for his communication, if there was

one thing we consistently prayed for, it was clarity.

What was best for this little miracle boy?

Who was he designed to be and how could we

help him to become that? Would we make the "right"

choices for him?

This MRI really brought us the clarity we were seeking

and helped us to see and to embrace that our son was born Deaf.

Perfectly, peacefully Deaf. He has never known sound.

He does not have hearing loss - he lost nothing.

This is how he was made. Lovingly and intentionally made.

He has always known a quiet world and he has always taken

everything in through his eyes. Those gorgeous,

soulful deep brown eyes...

And as far as we can see, this little guy sure isn't missing a thing!

He is so engaged with the world, loves to connect with people and is

very good at communicating his thoughts and his needs.

(Givenson signing "Dad" during a recent photo shoot!)

And so, we are all fully engaged in learning a second

language as we teach our son his first language - ASL!

We have THE MOST amazing support from people

in the Deaf Community who have embraced us

with such love and support and patience!

We have been BLESSED by this opportunity to

be welcomed into a community that I have to admit,

we may never have entered into without

the introduction of a Deaf child into our family.

So, once again, his life is a gift to us. And we are grateful.

Negative!

2011-02-25T10:56:00.004-06:00

We are thrilled to report that the

results of Givenson's scan were

NEGATIVE!

No sign of a tumor!

The test has an 80% accuracy

rating, but the oncologist said

she has no reason at all following

this scan to believe that this is a

tumor.

Awesome!

To be absolutely certain,

Givenson's surgeon will do

a biopsy (and possible excision)

the next time he goes in for surgery,

but we won't schedule anything

immediately to investigate this mass.

We are so relieved and

grateful for all of the prayers

for clarity and protection.

We are all resting a little easier.

Especially Givenson..... ;0 )

More Scanning

2011-02-15T23:38:00.004-06:00

Givenson will be back at Mayo Clinic

this week for more testing.

His Oncologist (and colleagues) are still

perplexed, but working diligently to determine

what this mass is near his kidney

and adrenal gland.

They have ruled out a Neuroblastoma,

but are still attempting to determine if this is

a Pheochromocytoma.

All the Pheo tests thus far have produced

"borderline" or inconclusive results and

so this Thursday and Friday

Givenson will undergo an MIBG scan.

This is a two-day process involving

the injection of a radioactive fluid

on day one (metaiodobenzylguanidine,

for those who get excited about science

...or REALLY long words!)

and then a sedated scan on day two

that should pick up any tumor,

if a true tumor is there.

We have already been warned that the

scan has an 80% accuracy rate, so it

is possible that the results will once

again be inconclusive.

We really don't want that.

We need to know what this is so we can

make decisions about surgical excision,

if necessary and about other

upcoming surgeries for little G.

Please pray that this scan would

be conclusive for us. If there is a tumor there,

let it glow brightly for our Oncologist's eyes

to see and then begin to treat.

If there is no tumor, let it be very evident.

We also ask for prayer for Givenson as he

receives this radioactive injection; blockers to

protect his other organs from that radioactive

injection, and of course sedation for the procedure.

This kid is a trooper!

We'll keep you posted as we learn more.

What it is not....

2011-01-26T23:55:00.004-06:00

We got some news from the

Oncologist/Hematologist this morning

regarding Givenson's tumor.

We are thrilled to report that tests revealed

NO indication of a Neuroblastoma!

This would have been the most serious

and potentially life-threatening explanation

for the tumor/mass and we are so very

relieved that Little G does not have

to walk this particular road of

childhood cancer.

The test results for Pheochromocytoma

were unfortunately less definitive.

His results fell in the "borderline" category,

which leaves our Oncologist and Nephrologist

with the very difficult task of discerning

whether these borderline results are coming

from a tumor or from the abnormal way in

which his sole working kidney functions.

It has proven to be quite difficult to qualify

so many conditions in little G's body

on any "normal" scale because

he seems to have his own version of "normal"

for a whole lot of things!

Sooooo...for now, we have some more

blood work ordered

(poor kid - he HATES needles!)

and more tests will be run to attempt to

qualify this tumor/mass.

At this point, the two schools of thought are

a Pheochromocytoma (which would likely be

removed surgically) or Lymphadenopathy -

lymph nodes in overdrive (which may or may not

require any intervention)

We'll keep you posted!

Thank you for all of the love and prayers

and support.

Little Update

2011-01-16T23:09:00.013-06:00

I wish I had more to share, but I guess

sometimes, even just an update that "there's

not a lot to update" is helpful for all who are

waiting and praying and wondering.

(Again, thank you for doing all of those things

for our little guy!)

We did meet with the Pediatric Oncologist this week

and I would say we left the appointment in a cautiously

optimistic posture.

Although Givenson does clearly have a mass

of some sort in his abdomen (back-studies of earlier scans

actually revealed that it has been there since

at least March), it seems the mass has not grown

or changed significantly over the course of

nearly a year's time. This is a good sign

as most cancers would be visibly growing and changing

in that timeframe.

After a lengthy discussion about Givenson's health history,

the Oncologist felt it is possible that what we are seeing

on the MRI scans is actually lymphadenopathy -

a big word for swollen lymph node(s).

Her thought is that G's chronic urinary tract infections

could have simply sent some of his

lymph nodes into overdrive,

causing swelling and enlargement.

This may require intervention or may resolve on it's own

if we can keep those darn UTI's more at bay.

We are still going to do a serious work-up on

G's blood and urine to look for anything that might

suggest something more malignant.

The blood is already at the lab

and we have been charged with the task

of a 24-consecutive-hour urine collection on our

very active one year old.

(any volunteers?)

I am certain there will be some good content for

a blog post or two from THAT experience!

The collection kit includes a state-of-the-art

"tinkle bag", medical grade adhesive for

strategic placement of the aforementioned bag

and a screw-on hose for emptying the

collections into a giant vat of preservative.

Good times.

p e e k - a - b o o !

If there is nothing remarkable on the cultures,

the plan is to rescan in about 3 months.

At this time, surgical biopsy is not being recommended

unless the cultures suggest that a biopsy is

necessary.

Please pray for wisdom and accuracy in the lab as

they study the urine and blood cultures, and that

if there is ANYTHING malignant, that it would be

clearly identified so we can address it right away.

Givenson has also presented with some odd

red and white blood cell levels on previous studies

of his blood. These could be attributed to infections,

or more serious causes including leukemia

or certain anemias.

Again, please pray that anything abnormal

would be clearly identified so we can address

these issues right away.

I'll end by saying, we sure do love you, Givenson!

You are our little hero for all that you go through

and still come out smiling! Truly, our hero.....

Tumor.

2011-01-12T04:25:00.004-06:00

We received the results of the MRI

late in the day today.

Givenson has a tumor growing

on his left side near his kidney

and adrenal gland.

We have been immediately referred

to Oncology for further diagnostics,

including blood and urine work

and a biopsy or biopsies.

We are a bit in shock. Is there no

limit to these diagnoses for this baby

boy??

Once again, we are gearing up

for another fight. Frantically researching

to be armed with knowledge. Desperately

praying for mercy and miracles...

For those who pray...

2011-01-10T00:21:00.005-06:00

Thank you for all of the prayers and well-wishes during

Givenson's back-to-back Holiday hospitalizations.

First, a four day stay (the four days before Christmas!) for the Malrotation

and then another four day stay (starting New Years Day!)

for a very scary Urinary Tract Infection.

our little man not feeling so good...

This boy has sure racked up some serious hospital-time in 2010!

When time permits, I need to share some of the amazing things that

happened during these very unexpected stays that certainly

hadn't been a part of our holiday plans. Just when we thought

that the Christmas season might be completely ruined

for our little family, the love and peace and generosity and

miracles of the season just flooded in...

We are grateful to all of the amazing staff and volunteers at Mayo Clinic

and Ronald McDonald House who go out of their way to support

not only our children's health, but also their happiness and sense

of belonging. Both places have really become a home away from home

for us. We are grateful!

So what's on for 2011?

Givenson will be back at Mayo Clinic tomorrow (Monday) for an MRI.

In a review of G's previous spinal MRI, radiologists noted a possible

mass on his Adrenal Gland. His surgeons have requested a follow-up

MRI focusing specifically on the Adrenal Glands (which sit right on top of the

Kidneys....or Kidney as case may be!) to attempt to diagnose this anomaly.

I am glad we are getting in there to see what's going on,

but I am always nervous about any potential new diagnoses.

Please pray that the MRI gives our doctors a very clear and accurate picture

of Givenson's adrenal gland(s) and any mass that may be growing. Pray

for clarity as they discern the best course of treatment, if treatment is needed.

Prayers for Givenson as he fasts, then goes under anesthesia and recovers

from the procedure are always appreciated. These are long days for him

and though he is QUITE a trooper, we do know this is a lot to get through...

Thank you for all of the love and continued amazing support

for our family and for our miracle boy, Givenson.

Happy New Year from the adorable Haitian Sensations!

Unexpected Surgery - Update

2010-12-21T22:11:00.002-06:00

I know it has been WAAAAY too long since I have updated the blog, but I did want to let all of Givenson's supporters know that he is currently back in the hospital recovering from a "surprise" surgery that was completed this AM.

Givenson has been experiencing a lot of GI symptoms over the past few months,

including an extremely decreased appetite, vomiting after eating, weight loss, etc.

We've been really worried about him and have been "patiently" waiting for a GI consult with one of the very best (and very busiest!) pediatric GI teams here at Mayo.

We came for a consult and some diagnostics on Monday and it was determined that Givenson's intestines were malrotated. This is another birth defect - the rotation should have happened during his tenth gestational week in utero. You can learn all about Intestinal Malrotation at your search engine of choice....you can even watch an example of the repair surgery on YouTube!

A Ladd's Procedure with Appendectomy was recommended ASAP to correct the malrotation which can lead to quite critical and even fatal GI complications. Givenson's awesome general peds surgeon, Dr. P agreed to add us to his already full case load today - he even made him first case of the day. They are so unbelievably good to us here!

The surgery was successful and although I might not have chosen the week before Christmas as a surgical week for our family, I am so grateful to finally have a diagnosis that explains all of Givenson's symptoms and restored hope that he may get back on track with his eating and growth. That would indeed be the best Christmas present I could ask for!

We were also grateful to learn that while Dr. P was performing the Ladd's procedure, he discovered another defect - a Meckels Diverticulum, which he was able to immediately remove. This too could have led to GI problems down the road so it is a blessing that it was discovered!

Prayers for a speedy recovery and restored appetite for Givenson are appreciated.

Prayers for some sleep for Mom would also be great!

Merry Christmas to all, and to all a good night....

First Day of Baby School!

2010-09-25T01:50:00.005-05:00

all ready for his first day!

Givenson and I went to our first ECFE class today!

We have an absolutely wonderful teaching team and a pretty adorable

group of "classmates" :0 )

happy man!

I am so thrilled for this opportunity for Givenson to go somewhere

each week where his whole job is to simply be a baby.

No diagnostics or therapies, no blood draws or injections.

Just a lot of singing and playing games, watching other babies,

exploring new toys..... you know, BABY stuff! ;0 )

He needs this and he LOVED it!

signing "sleepy" after class....

He took a loooooong nap after class :0 ) Further proof

that he did indeed have a very good time.

Love it!

Welcoming Four New Additions...

2010-09-05T23:57:00.008-05:00

In the midst of his back-to-back hospitalizations,

Givenson decided to keep things interesting

by cutting his first FOUR teeth!

This boy is no fool.

He waited until he had access

to an entire Pain Management Team

and an epidural before he let those

teeth break through ;0 )

Lookin' good buddy!

Long Lost Twin Sister?

2010-09-03T20:47:00.003-05:00

Wardrobe and styling brought to you by our six-year-old ;0 )

Home. :0 )

2010-08-27T23:26:00.006-05:00

I will try to update more as time permits, but I wanted to post a quick note that we have been home since Monday (just 3 days post-op!) and Givenson is doing amazingly well.

No surprise to all who know him, he is his delightful happy self, laughing away at Peek-A-Boo and delighting in the antics of his big sister. He is eating and sleeping and settling back into his routine very nicely. What a blessing and a relief....

Our little guy with his favorite gal (and her braids!) at Children's

On a very encouraging note - he is actually enjoying Tummy Time now and even making some vague attempts at crawling motions. This was unheard of before this surgery. He HATED time on his tummy, rolling over at the very first opportunity he got.

He could also never take a true crawl position. He would hold his legs straight instead of bending his knees. It was like watching Baby-Yoga as he did the Downward Dog!

We are all so eager to see how he continues to develop now that he is untethered!

He is off his pain meds except for the occasional dose of infant Tylenol which I think he is requiring more for the four teeth he is cutting than the 50-stitch-long incision down his back!

What a trooper!

He is such an amazing boy and we are so very proud of him!

I'll leave you with a few images from the last couple of weeks. Enjoy our little "patient"....

Chillin' at Children's where we were often asked...."Is he always this happy??" Yep!

Guess who got to ride in an ambulance?

No sirens, but he didn't miss them ;0 )

He slept most of the ride...

Happy post-op patient reassuring us all that his legs still work!

Thank you Dr. W and Mayo!!

Miracle Boy....

2010-08-20T14:54:00.007-05:00

We have time for just a quick but wonderful update from Mayo here.

Givenson's surgery is complete and we are so very happy to report that the untethering was very much a SUCCESS! We met very briefly with the Neurosurgeon, Dr. W following the procedure. He shared that the tether was much less complex than he had expected.

There was a significant amount of fatty tissue attaching the cord to the spinal bone, but it contained NO nerve roots which is a HUGE answer to prayer. Dr. W was able to simply remove the entire mass of fatty tissue without having to disect out all of the delicate nerves. This disection process is what can sometimes lead to nerve damage, loss of motor function or sensation, etc.

Givenson is still recovering from the surgery and coming out of anesthesia. His pain will be managed by epidural over the next couple of days and we'll be staying here for a few days to monitor healing, watch for infection, etc.

We are so grateful for God's protection and provision for Givenson.

We are grateful for the wise and loving care from his medical team.

We are grateful for all of YOU who care and pray and support us in this!

The Plan...

2010-08-18T10:32:00.005-05:00

As of this moment, the plan is for Givenson to be transferred by ground transport from Children's to Mayo for his spinal untethering surgery on Friday as scheduled. He had clear urine culture results from samples taken yesterday and also on Monday which means he has not only a 24 hour "clear", but also a 48 hour "true clear" which is really great news!

Clearly (no pun intended), we have learned that "the plan" could change at any moment, but we are optimistic and so grateful for the good comprehensive care that he received at Children's!

Givenson is his usual happy self. His demeanor through all of this is remarkable. I learn from this little man every single day....or try to. His joy is not determined by his circumstances. If he is surrounded by family and love, he is happy and content. He is a wise little soul....

Here's a funny photo from the archives for your viewing pleasure.

I have entitled this one "Afro Envy"

rest in peace Gary Coleman. I hope you have finally discovered what Willis was talkin' about...

Prayer Request

2010-08-15T13:32:00.003-05:00

I don't have a lot of time to write, but our family would really appreciate some very specific prayers for Givenson right now.

He is in the hospital with a bacterial infection in his urinary tract.

The bacteria is rare. It is also drug resistant.

Please pray that his physician and infectious disease specialist can determine the very best course of treatment for Givenson to fight this infection swiftly and completely. Pray for protection from infection for his one functioning kidney, and that this bacteria does not enter his bloodstream.

Givenson is tentatively scheduled to have his spinal cord untethered next Friday, August 20th. Prayers for his restored health before this date are much appreciated.

It is our hope that this long-anticipated spinal surgery may help to improve some of Givenson's bladder function and therefore reduce or eliminate these chronic urinary tract infections. It would be ironic and disappointing if one of those UTI's actually keeps him from having the surgery that might give his body better protection against UTIs.

As always, God is in control. Still, I know He likes to hear from us

so your prayers alongside ours are coveted and appreciated.

Catching Up

2010-08-13T21:32:00.008-05:00

Okay, so it has been WAY too long since I updated the blog. It seems a certain little man has been keeping us pretty darn busy lately! ;0 )

Instead of trying to tackle the overwhelming task of one update, I'm going to try to get a series of updates out there over the next few days. As I type, Givenson is actually hospitalized at Children's for yet another Urinary Tract Infection. Prayers for his healing and for a better understanding of why he is plagued with these chronic (monthly) UTIs would be much appreciated. The ER visits and subsequent hospitalizations are no fun for any of us and really no good for his one functioning kidney. It is important that we get this figured out and resolved soon.

Soooo.....over the next few posts, you can expect to read about:

Plagiocephaly & Torticollis

(to the layman: big ol' flat spot on baby's tilted head)

Spinal Untethering Surgery

UTIs and Multi-Drug Resistant Bacterial Infections

Cochlear Implants!

Baby Milestones - like Sitting and Eating Real Foods :0 )

and more....

Plagiocephaly and "The Helmet"

You may have noticed Givenson's newest accessory in the photo posted above. This is a Plagiocephaly Helmet designed to help his head/skull grow more symmetrically than it has been on it's own. Givenson had a condition called Torticollis when he came to us. Here's what "Google" will tell you about Torticollis:

Torticollis is a form of dystonia (prolonged muscle contractions) in which the neck muscles, particularly the sternocleidomastoid muscle, contract involuntarily causing the head to turn. Torticollis may occur without known cause (idiopathic), be genetic (inherited), or be acquired secondary to damage to the nervous system or muscles.

Basically, Baby Givenson held his head at a tilt most all of the time. You can see it in his earliest pictures....

We worked with him from very early on to be able to turn his head at all toward his right side. At first, I was certain that I would tear or break something, it was so stiff and tight. Over time, he began to loosen up and even to start turning toward the right on his own, but the tilt still won out if he was fatigued or at rest. This meant LOTS of hours sleeping and laying down to play with his head in that one same position.

Our Physical Therapy team gave us lots of stretches, positioning techniques and exercises to try to loosen his neck muscles and tendons and to give him greater range of motion.

Still, over time, his skull and head began to get more and more flat in the spot where he always rested. It eventually became evident that orthotic intervention would be beneficial for several reasons.

First and foremost, resolution of that flat spot would actually help him continue to heal from the torticollis. It was a bit of a "chicken or the egg" dilemma as the torticollis initially caused the flat spot which was now exacerbating the torticollis!?! Confused yet? ;0 )

The flat spot was actually hindering his progress in physical therapy because the tendons, etc in that side of the neck were really only being stretched during PT/OT times. When he slept, sat in his carseat or lay on his back to play, his head always rolled back onto the flat spot and that side of the neck went back to "slack".

Sooooo, a few laser scans of his head and one custom-made orthotic helmet (in a lovely shade of blue) later, we have a head that is getting rounder and rounder every day. The plan is for Givenson to wear the helmet for about 12 weeks for a minimum of 23 hours per day with a short break for a shampoo and helmet cleaning each day. He is actually quite indifferent about the whole thing. He has had no issues wearing the helmet and still gets lots of comments about how cute he is. We agree. ;0 )

We will have some necessary breaks in his helmet-wearing schedule for upcoming surgeries that take precedence over a perfectly shaped melon. ;0 ) More on those surgeries to follow....

Splish, Splash...

2010-07-05T22:21:00.002-05:00

http://www.babymeetworld.blogspot.com

Big news there. ;0 )

Vote for ME!

2010-07-01T08:42:00.005-05:00

Little Givenson is a FINALIST!

Tummy Tub selected our little miracle boy as

a finalist in their Happy Baby Contest!

Truly, I can think of no happier baby :0 )

If you agree, vote for him today!

http://babymeetworld.blogspot.com/2010/06/vote-for-your-favorite-happy-baby.html

Here are a few more cute pics as incentive to VOTE!

Enjoy....

Lovin' the Tummy Tub

2010-06-15T22:54:00.004-05:00

This boy LOVES bath time!

This momma LOVES the Tummy Tub!

Can you see his little hands and feet and belly in there? It's like he's back in the womb.

He LOVES it in there....cries when I take him out. Best Craigslist purchase ever!

Google "To Do" List - A Post Surgery Update

2010-05-31T23:05:00.015-05:00

We were back at Mayo with Givenson last week for more surgery, more appointments and more diagnostics. This boy has an aggressive schedule. Good thing he is so easy going! He continues to win hearts in each and every department that he visits at Mayo and St. Mary's :0 )

We have lots of updates and I usually do all of my "Googling" on each condition before I post, but I know many of you have been waiting too long for an update, so I'll give you what I know today and I'll post more in the future once I've learned more myself!

Here is what we went for:

Pediatric Eye Exam

Urology Follow-Up Visit

Nephrology Follow-Up Visit

Neurology Initial Consult

ABR Hearing Test

Echo/EKG of Heart

Colostomy Closure Surgery

Ophthalmology

His eyes looked really good! We've always known that his eyes were BEAUTIFUL, but now we know that they work very well and his ophthalmologist had no concerns about structure or function. Wonderful :0 )

Urology

Givenson's Urologist was optimistic about the progress we are seeing in his bladder and kidney. We were worried about possible urinary reflux from the bladder into the kidney following the surgery he has in February, but the VCU/Urinary X-Ray showed no reflux, which is great! With just one kidney, we don't want any infection to set in and reflux could definitely cause that. The poor kid has been on antibiotics of some kind every day since he arrived in January - at times in response to bacteria that shows up in his urine cultures, and the rest of the time prophylactically in an attempt to reduce the risk of kidney infection. As of this week, based on his track record and the encouraging results of the VCU, he is antibiotic-free! Please pray that his kidney stays infection-free without the antibiotics.

Gavin is still on daily meds to help regulate bladder spasms and to encourage regular output of urine. It remains to be seen if he will have urinary continence when he gets older, but we'll keep on tracking with his Urologist and we'll cross that bridge if/when we come to it when he gets to potty-training age.

Givenson will still have one more surgery with his Urologist this winter but we will likely have no additional follow-up with Urology until then!

Nephrology

G's hypertension is still pretty much a mystery to his Nephrologist and all of "Team Gavin" at Mayo. His Cardiologist says that his heart issues would not be causing it. Tests done by the Nephrologists seem to indicate that his Kidneys are not causing it. In the short term, the Isradipine (daily med) is successfully stabilizing his blood pressure. So we'll keep him on that as he continues through his multitude of diagnostics and surgical procedures in the hopes that one of these tests or surgeries might shed some light (or even resolve) his high blood pressure.

Neurology

We added another member to "Team Gavin" in the Neurology department to address some gross motor skill delays as well as the potential complications of his tethered spinal cord, etc. I liked this doctor the minute we started talking and I know she is going to be a great physician for us to track with in the coming years.

Our plan is to start with Physical Therapy and Occupational Therapy for Givenson. Therapy will be spearheaded by the Mayo PT/OT Team with local support from the Early Intervention Services in our community who can work with us right in our home. We are grateful for this team approach that will allow Givenson to have some really great minds around his care/therapy plan in the years ahead. There are still a lot of unknowns at to how he will develop in his motor skills and I am so glad to have this early start on therapy for him!

Audiology

Gavin finally has the sedated hearing test that we have been hoping for. As we suspected, the test did confirm that he does not hear. He has a fairly rare condition (go figure!) called Auditory Neuropathy or Auditory Dysynchrony. This is also sometimes referred to as Auditory Neuropathy Spectrum Disorders. Go ahead and "Google" this - I have been too! Basically, the entire structure of his ears is present and actually fully functional. When sound is presented, the ears "fire" just as they should. His central hearing nerve in his brain that should receive the sound signals from the ear is also present and fully functional. Unfortunately, the connection between these two functional pieces is either not present or is not functional. Sadly, it's like having a really great radio and really great speakers, but a faulty wire to connect them. The result? No music.....or, possibly a lot of static and interference. Even the experts in the field are still trying to determine what (if anything) that people with this condition "hear" but it is definitely not anything useful for navigation and communication.

We're going to be meeting with the ENT Department in the weeks ahead to discuss the options for Givenson. We'll learn about the possibilities of hearing aids, cochlear implants, etc but we are aware that these devices may not work for our little guy. We still have a LOT to learn about this new diagnosis so we'll keep you posted as we learn more.

In the mean time, we'll continue to learn and practice sign language (ASL) with Gavin. We feel it will be an important part of his/our communication whether we choose to look at hearing devices or not. It is honestly such a wonderful tool that provides us with an opportunity to truly communicate with Givenson much sooner than we might have if we were teaching him spoken word only. Just tonight he was clearly making attempts to sign "Hi" and "Thank You" and we were all clapping and laughing as he laughed and smiled from ear to ear at the connection he was making with us. Brilliant. He is an amazing and resilient little guy. We are so proud of him!

Cardiology

We were thrilled to learn that Givenson's heart has actually IMPROVED! Pulmonary vein stenosis (narrowing of certain veins in his heart) was discovered back in January shortly after G arrived here in MN. The cardiologists told us that the condition is basically inoperable - either the body adapts to it, or it succumbs to it. It was a "wait and see" item so we are THRILLED to report that his echocardiogram and EKG suggest that he may be a kid that will adapt to his stenosis. Pressure readings in both the right and left sides of the heart were significantly lower than the readings taken 3 months ago. This was great news! We'll follow up with another Echo/EKG in 6 months.

Colostomy Closure

Drumroll, please! .\ / .\ / .\ / \ / . \ / .\ / . Givenson can poop normally now! ;0 )

The colostomy bag is off, his stoma is closed up and he had his first official poopy diaper on Friday! For the next several weeks (or possibly months or even years) we will be on CONSTANT perianal skin care management in an attempt to prevent skin break down, irritation, rash, ulcers, etc. from the introduction of stool onto skin that has never grown accustomed to such matter.

We were told that in newborn babies, the poop actually has a different pH that gets gradually more acidic over the first weeks of life, allowing the skin on the "bum" to build up a tolerance that allows normal babies to have dirty diapers, changes, exposure to the chemicals in baby wipes, etc. without much more harm that the occasional diaper rash. For Givenson, the gradual weaning never happened so his skin is in no way prepared to handle what is coming at it right now. We have an ARSENAL of skin barriers - sprays, powders, creams, pastes, special wipes, cleansers, pads, etc that we use in one well-orchestrated combination at each and every passing of stool (yes, even the tiniest of dribbles) in an attempt to keep his skin protected and free of rash or ulceration. He should eventually build up a tolerance for passing stool into his diaper, but it could take quite some time.

Please pray that we can stay really committed to this taxing but necessary routine and that Givenson's body learns to tolerate this new way of voiding.

Phew! I think that's everything! For now.....

photo credit for this and all images in this post to Shari Y.

As always, thank you for all the love, prayers and support that we continue to receive as we walk through all of these medical procedures. Givenson continues to amaze us with his resilience; his happy, happy disposition; his bravery and tenacity and his will to seize all that this life has to offer. I am in awe of this little one that God has made and so humbled and grateful to have him in our lives.

Some Light Reading...

2010-05-10T21:26:00.002-05:00

I may not be able to sit up yet.....

2010-05-06T14:23:00.006-05:00

but that does NOT stop me from dancing!

The Sprinkler....

and The Cabbage Patch...

Food, Glorious Food!

2010-05-05T14:39:00.002-05:00

Guess who got the go-ahead to start eating food!

Food and a facial! ;0 )

Tethered

2010-05-04T10:01:00.006-05:00

Givenson had his MRI last week. His Neurosurgeon was looking for evidence of Hydrocephalus and/or a Tethered Spinal Cord - both of which can occur frequently in kids with VACTERL syndrome. The procedure went well. He needed general anesthesia as the scans took almost two hours, but he "slept" well and recovered nicely with no complications.

The good news? No evidence of Hydrocephalus! His ventricles looked a bit large to the surgeon, but it was nothing that caused him to be overly concerned. We'll continue to closely monitor his head growth and watch for signs of pain or distress, in which case we'd take another look, but for now it looks good! That is an answer to prayer!

The "bad" (though not unexpected) news is that his cord is indeed tethered. We knew that this was a possibility either immediately or down the road as he grew taller, but the cord is definitely already tethered. Basically, the spinal cord is supposed to "live" up inside the spinal column and it is supposed to just "float" freely in the spinal fluid, protected by the bones surrounding it. As children grow, the bones stretch out as they get taller, but the cord just stays floating freely in the center. For Gavin, his cord is attached (tethered) to the bones in his spine. As he grows, his spinal cord would actually start to stretch and become more and more taut. This could eventually compromise any or all lower function of his body including his ability to walk or move his legs, his urinary and bowel continence, etc. Not good.

Soooo....the plan is Spinal Cord Untethering Surgery this Summer after he heals from his Colostomy Take-Down Surgery at the end of May. It will be S.O.S. - Summer of Surgeries for our little G-Man.

There are many ways that a cord can be tethered. Unfortunately, Givenson's tether is quite complex, involving not only his cord, but also many, many nerves and lots of other connective and fatty tissue all webbed together in one tiny, complex tether. The Neurosurgeon let us know that there can be complication to this surgery if any of those nerves are damaged during the very careful but very precise releasing of the tether. Clearly, the goal is to preserve as much nerve function as possible - prioritizing Givenson's mobility above all else, but also working very hard to retain his bowel and urinary function. We have a lot of confidence in the surgeon who will do this surgery and we trust that he will take great care to protect all the little parts and pieces of our little guy. He will be in good hands and he will be covered in the prayers of his host parents and so many others for a safe procedure and a successful outcome.

We were not able to get the ABR (hearing) test done during his MRIs last week, so that test will be done at the end of the month during his Colostomy Closure. More on that...

Just two days after his birth, Givenson had a life-saving colostomy procedure done at Milot Hospital in Haiti. Born with an imperforate anus (no hole for his poop to come out) he was brought to Milot in very critical condition, vomiting stool and septic. The surgeons at Milot gave him a colostomy that allows Givenson to void out the side of his body - his large intestine is pulled out through a small incision and sutured into place with a temporary opening cut for stool to empty into an attached "appliance" or bag. Or to empty right down his side and onto the bathroom rug, if we don't get his appliance on fast enough after his bath! ;0 )

This procedure is a temporary fix that allowed Gavin's body to "poop" until his rectal opening could be surgically perforated and properly connected up to his colon. His Perforation Surgery took place back in February and thanks to Dr. P, Givenson now has a rectal opening which has healed up very nicely and he is ready to have his colostomy closed up so he can start pooping "normally".

The surgery should be fairly straight-forward and should actually take less than an hour. Gavin will stay in the hospital for a few days just to make sure that the intestine is not leaking at all, which could cause significant infection. We'll also make sure that his little body takes to the new way of pooping! It could take a bit of getting used to....and possibly a life-long regimen of prune juice, but we're eager to enter this next "post-bag" phase of Gavin's life! And just in time for the swimsuit season!

Thanks for all the love and prayers for our little miracle boy!

G-Man's New Pastime

2010-05-01T21:36:00.004-05:00

When it comes to UNO, the boy is a shark!

Concentrate....

Focus....

And, he's GOT it!

More Diagnostics...

2010-04-18T22:07:00.005-05:00

Givenson had a few appointments last week and is heading into some big appointments in the next couple weeks. Last week, we met with the Chair of the Genetics department at Mayo to discuss Givenson's many congenital defects and to attempt to link them to one (or possibly more than one) specific syndrome(s).

After a long discussion of all that has been discovered in Gavin's little body over the last few months, we could see that it is very possible that he has at least one, if not more than one genetic syndrome. I was amazed at this physician's knowledge of the many, MANY syndromes out there and the subtleties of each one. She was incredible.

Her recommendation was to start with a study of Givenson's blood. Specifically, they will do a Chromosome Array Comparative Genomic Hybridization....a really long name for a test that evaluates Givenson's chromosome structure for extra or missing pieces. Additions or deletions in the chromosome structure can lead to birth defects.

My (possibly naive) question was - why are we doing this? Don't we already know that he has birth defects? Well, in addition to providing valuable information for the research team at Mayo who work toward cures and/or prevention strategies for these syndromes (bravo!), the main reason we are doing this for Gavin is to know more about the specific chromosomal anomalies present so we can know what we might anticipate (or investigate) structurally and developmentally beyond what has been discovered thus far. In addition to identifying whatever is present, we will likely be able to rule out some syndromes (and all their associated symptoms) that up until now, we've needed to simply wonder and watch for.

We should know more about the results of this initial study in a couple of weeks. This may be be followed by some more specific testing for individual genetic disorders that would involve more blood being sent to labs specializing in these types of tests all over the world. Little Gavin's blood may go global! Who knew....

Next week, Givenson will go "back to sleep" for a couple of significant diagnostics that we have been eager to have done. He will have an MRI of his brain and spine which will help his Pediatric Neurosurgeon to identify what specific structural anomalies are present and what risks little G may run both structurally and developmentally.

We have noticed a couple signs that may suggest some very early and very mild hydrocephalus - a condition that does present itself with VACTERL Syndrome in some cases. Wikipedia - help us out, please?

Hydrocephalus (pronounced /ˌhaɪdrɵˈsɛfələs/), also known as "Water on the Brain", is a medical condition. People with hydrocephalus have an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.

Though it is worrisome for us to imagine this may be present in Gavin, we trust that if we do find hydrocephalus, we will likely be able to get it under control with the installation of a ventricular catheter or shunt which would drain the excess fluid from the ventricles of the brain into other body cavities. From there, it can simply be reabsorbed by the body. Most of our bodies do this naturally. Gavin's may just need a little assistance... Over the years, we have met some pretty amazing kiddos who have hydrocephalus that is completely managed with shunts (and, of course, great neurosurgeons!) and we trust that if this is our road, Gavin will once again be in expert hands at Mayo.

We will also learn more about the condition of Givenson's spine. We already know that he has sacral (lower) spinal anomalies but the Neurosurgeon should be able to tell us more about the likelihood of G developing a tethered cord which could present a very significant risk of accidental death for him and would require surgical correction. This could happen anywhere along the line as he grows so we will have an ongoing relationship with his Neurosurgeon to monitor his growth and any changes in his spine.

He is also at risk for things like scoliosis and other spinal conditions so we are eager to learn all that we can so we can be preparing for any obstacles that he may face.

If all of this doesn't seem like enough so far, Gavin will likely undergo his Auditory Brainstem Response (ABR) Test while he is under anesthesia for the MRI. This test should determine if he is deaf or if he can hear and if so, to what extent. We are also eager to have this information so we can consider our options for cochlear implants, hearing aids, etc. and if necessary, really dive head-first as a family into the realms of sign language, deaf culture, etc.

As in so many arenas, knowledge is power as we work to manage Givenson's health and well-being. Yet even as we gain more and more knowledge, we still trust that God is more powerful and we have seen that HE is clearly woven into Gavin's body and spirit right along side all of these symptoms, syndromes and chromosomal anomalies. For that, we are grateful and have unwavering hope for his life....

He is our baby. Perfectly made.

ten tiny fingers...

ten tiny toes....

Worth A Thousand Words...

2010-04-11T23:30:00.001-05:00

We are blessed.

Blessed to have friends and family, neighbors

and a church surrounding Givenson

and our whole family with love and support.

Some days, the blessings take the form of diapers, formula,

baby clothes or even gas money.

We are so grateful.

Some days, the blessing is childcare or a home-cooked meal.

Again, we are so grateful.

Today we received another incredible blessing.

A longtime friend blessed us with her incredible talent

(and precious time!)

as she captured little Givenson

in the most dear and heartwarming pictures.

Here are just a few....

photo credit (and so much gratitude!) goes out to Shari Y.

Bacteria, Be Gone!

2010-04-07T21:43:00.000-05:00

Little Givenson has had Urinary Tract Infections since the day he arrived from Haiti. He has been on rotating prescriptions of Amoxicillin, Bactrim and Furadantin for months now....

Each time we're close to the "preventative" once-a-day dosing, his Urologists take a urine sample (by catheter - poor guy...) to determine if there is still bacteria growing. If the culture comes back positive, they let it grow for 48 hours to determine what type of bacteria he is dealing with and which antibiotics the bacteria is resistant to.

It seems the minute we have success clearing one type of bacteria with one type of antibiotic, a different little bug presents itself in the next culture which is, of course, resistant to the antibiotic he's been taking. Hence the dance between the three antibiotics. Ugh!

We know that UTIs will be a chronic problem for little Gavin based on the structure of his kidneys, ureters and bladder. His surgery in February was one step toward improved function in his urinary tract, but healing will be gradual and may take many months or even years.

Sometimes he seems unfazed by the infections. Sometimes he seems quite uncomfortable with pain when he is held or needs to change positions. Clearly, it is hard to see him suffer like that...

Gavin does currently have an infection and just switched antibiotics yesterday. He seems less "himself" today, sleeping a lot more than usual and eating a lot less than usual.

If you have a moment, please pray for his comfort tonight. He has been through so much and is such a trooper. I know he can handle just about anything that comes his way, but we would love to see him infection-free and comfortable so he can just relax and enjoy being the little "rock-star" that he is! ;0 )

Little Cutie...

2010-04-06T23:16:00.000-05:00

Loved...

2010-03-31T19:30:00.000-05:00

tender moment captured by Shari Y. (thank you!)

Little Update

2010-03-29T18:33:00.000-05:00

photo credit to our AMAZING friend Shari Y. (Thank you!)

We were back at Mayo last week for some follow up visits with some of Givenson's doctors. It was another 7:00am to 7:00pm kind of day, but we got a lot accomplished. Our very "chill" baby seems to take it all in stride - his disposition is PERFECT for a child with multiple congenital defects. He smiles and coos at all of the docs, nurses, receptionists, techs, other patients.......he has a growing fan-base at Mayo ;0 )

We learned that the Urology portion of Gavin's surgery in February was successful! The ultrasound showed no signs of either ureterocele (the blister-like "bubbles" that were located on each of his ureters). This is really good news as it was unclear at the end of the surgery if one of the celes was actually broken or if it might still be intact. Had it shown up intact on the ultrasound, another day-surgery would have been necessary to make a second attempt at breaking it. More anesthesia, more pain, etc., etc..... But they got it the first time and we are grateful!!

His ultrasound showed no change in his right kidney which is exactly what we expected. That is the multi-cystic dysplastic kidney which has no function. His left, functioning kidney is still showing signs of hydronephrosis, even after the ureteroceles have been broken.

Hydronephrosis is distention or enlargement of some of the central/storage sections of the kidney. It is usually caused by some kind of obstruction keeping urine from flowing freely out of the kidney. (for Gavin, that obstruction was a large ureterocele) In essence, the storage portion of the kidney gets all stretched out from being so filled up with urine. Even though the obstruction has been removed, it will likely take a long time for the hydronephrosis to correct. It may never return entirely to it's original size/structure but we do hope to see gradual improvement in the months and years ahead.

In the mean time, he is at greater risk of infections as the structure of his kidney allows for urine to get "trapped" and then to sit and grow bacteria. He is currently fighting a urinary tract infection and will likely suffer from these types of infections quite a bit as we work to stabilize his "plumbing". Poor little guy...

Givenson still has hypertension/high blood pressure and we are working closely with his Nephrologist to figure out why. His blood pressure meds were doing well to bring his pressures down to desirable levels, but his numbers began creeping back up over the last couple of weeks. This new bacterial infection in the urinary tract may explain the rising BP - especially if the infection went to his kidney. Still, we need to look at other possible explanations in the coming weeks.

We were told that most hypertension in infants/children is secondary - the high blood pressure is caused by another primary problem like kidney disease, a genetic disorder, etc. If you can identify and treat the source problem, the hypertension usually resolves. Less than 20% of infant hypertension is primary - not caused by anything else going on in the body and therefore typically requiring lifelong BP meds.

Everyone's initial thought regarding Givenson's hypertension was kidney disease, but the Nephrologist ran tests looking for elevated levels of renin and aldosterone (indications that his kidney is indeed compromised) and found neither. In his opinion, the kidney is not the likely cause of the high BPs though we will continue testing to confirm these results. This is good news for his kidney (and since he's only got one kidney, we'll take all the good news we can get!) but it doesn't solve the hypertension mystery. So.....

In an attempt to find or rule out other potential primary causes:

We will be meeting with a Geneticist this week to investigate the possibility that there is a genetic disorder present for Givenson. I am honestly not sure how this will work with us as we have absolutely no family history to present for him, but I guess we'll just do the best we can. I'm sure they will (once again) amaze me with their diagnostic abilities....

We will be meeting with a Neurologist to take a look at his brain and his spine. There are some neurological disorders that cause, among other things, hypertension. Givenson has been reaching many of the normal developmental milestones for his age, but he is not thriving in the gross motor skills. He will be 5 months old on April 1st and can still not hold his head steady when held. He cannot lift his head at all when placed on his tummy. He is learning to turn his head to the sides when he is on his back and on his tummy, but he definitely favors one side and can at times seem in pain trying to turn to the other side.

We have all kinds of grace for the fact that he had a unique start in life and will likely take some extra time to catch up. We try to work with him each day, encouraging him to use his little muscles to see his toys or turn to find his own sweet face in the mirror (his favorite!) and we have seen some definite strides! Still, we don't want to miss something important if there are some neurological issues soooo we'll add yet another couple of experts to "Team Gavin".

Sound asleep (in a crowded bowling alley!) on host-dad's birthday!

Despite all of this medical stuff, Givenson is doing really well! He is over twelve pounds now and is about 25" tall. He has nice chubby cheeks and thighs which are a welcome sight and he is finally getting a little more hair! He is reaching for things, has a rock hard grip and chews on EVERYTHING! He babbles and coos, and even giggles! ;0 ) He takes just one feeding in the night now and is a really sound sleeper. He is really a VERY enjoyable baby with a wonderful disposition.

What a blessing he is!

Just Monkeyin' Around

2010-03-12T17:59:00.000-06:00

What we know (and don't know)

2010-03-11T20:48:00.000-06:00

As suspected, we learned some things about Gavin's ears on Tuesday, but not enough to tell us why he is not responding to sound. The audiologist was able to evaluate the outer and middle portions of Gavin's ears. Both look normal and appear to be functioning normally. The innermost portions of his ears will need to be evaluated during his next surgery as they need him under sedation for this testing.

From what I understand (we're learning as we go here!) there are two types of hearing impairment -

Conductive Hearing Impairment results from structural anomalies or dysfunction in the outer ear, the eardrum or the middle ear. Tuesday's testing has likely ruled out this type of impairment in Gavin's ears.

Sensorineural Hearing Impairment results from structural anomalies or dysfunction in the inner ear - the cochlea or in any part of the "hearing portion" of the brain. If the little hair cells that should be in his cochlea aren't present or aren't working just right, Gavin's hearing would be compromised. This can be genetic (possible), a developmental abnormality (most likely for little G) or could have been caused by trauma (unlikely) or exposure to disease (possible).

If we do find irregularities in the inner ear (which my gut says we will...), depending on the severity of the impairment, Gavin may be a candidate for Cochlear implants.

It is less likely, but also possible that they would find a Central Hearing Impairment - structural anomalies or dysfunction in the actual nerves of his brain that are responsible for processing sound. This is rare, but our little guy doesn't seem to shy away from rare so we are prepared to hear anything.

During his screening, we did attempt to get a response from him using several loud squeaky toys, a series of hand bells and cowbells, and other very loud stimuli. With the exception of the cowbell, which prompted "well, maybe a small eyelid flicker, maybe..." he had no visual response to any of the sounds.

For perspective, I left the testing and needed to take two Tylenol as my ears were ringing and actually hurt from the sounds we were exposed to during the screening. It seems my hearing is just fine (because I'm sure you were all wondering), but the audiologist agreed that his response to sound was not what we'd expect from a 4 month old baby.

That being said, it is possible that Gavin's ears are still developing. We have no idea of his gestational age at birth - he may definitely have been premature as many babies in developing countries are. His little body was clearly facing other structural issues and it is possible that the full development of his ears took a "backseat" to some of these other issues. It seems hard to believe, but time and growth alone may change what we find in his ears...

Soooo.....for now, we treat him as though he is a hearing baby. The audiologist told us to talk to him all the time, play music for him and do all the things we would do if we knew his ears were fully functioning. His ABR - Auditory Brainstem Response Test will happen at the end of April or beginning of May during his Colostomy Closure Surgery.

Clearly, we will know much more about his hearing once we see the results of that testing.

We'll keep you posted! For now, I'm off to buy a cowbell ;0 )

A Big Question...

2010-03-08T21:28:00.000-06:00

Can you hear us, sweet boy?

Since his arrival, we have really wondered if Givenson can hear. Tomorrow at Mayo, we should start to get some answers about his hearing (or the lack thereof). Yes, one more member of "Team Gavin" - the Pediatric Audiologist.

This little guy can DEFINITELY babble and coo, but he can also keep an entirely straight face right through the unexpected sounding of our smoke alarm (which causes both our daughter and I to slam our hands over our ears and double over in pain) and he does not respond to people talking, singing or even shouting unless they are in his range of sight. You can clap your hands together full force next to his ear, but if he cannot see it, his eyelids don't even flutter.

Although hearing loss is not technically associated with VACTERL Syndrome, our own research has turned up many cases where children with VACTERL have profound hearing loss. We certainly hold out hope that Gavin can hear or that his hearing loss is more mild, but we are preparing for any outcome.

Tomorrow's testing will not be definitive, but it will help to decide what (if any) further intervention might be needed.

The pressure is off....

2010-03-07T22:36:00.000-06:00

Blood Pressure on Friday, March 5th

135 / 72

Blood Pressure on Sunday, March 7th

90 / 38

Ah, the power of vasodilation meds.....

Little Givenson is actually sleeping better, eating more

and in really great spirits!

Maybe these ancillary items are purely coincidence,

but we are glad to see such a swift and positive

response to this new medication and we are glad

it has proven effective at the very lowest dose.

Both good signs!

Meds it is...

2010-03-06T08:37:00.000-06:00

It looks like we'll be adding yet another medication to Gavin's daily regimen.

We had a nice visit with his Nephrologist yesterday. It was a chance to just sit and talk about all that we are seeing in little Gavin's Kidneys, Ureters and Bladder. Each have their own anomalies and the doctor has a very challenging job to try and figure out how five abnormally structured and abnormally functioning parts and pieces are working (or not working) together to cause high blood pressure.

For now, he felt it would be best to control Gavin's blood pressure with medication to essentially buy us some time while we investigate each structure. The benefit of time for Gavin, in addition to reducing the risk of long term damage, is growth.

When he had his first surgeries, he was just ten pounds. Some of the outcomes of the procedures were uncertain immediately following surgery and I wasn't completely sure why. The Nephrologist gave me some really good perspective on this yesterday. For example, one of the surgical goals was to break a ureterocele or small bubble on Gavin's ureter - the tube that allows urine to drain from the kidney into the bladder. Immediately following surgery, the pediatric urologist said he was confident, but not certain that they had successfully lanced the ureterocele. Diagnostics in a month would either confirm a successful procedure or reveal the need for an additional surgical attempt to break the bubble. As the Nephrologist described the procedure yesterday, he told me to look at Gavin (who is still pretty small), then imagine his kidney (a small organ within his small body), then imagine the tube/drain that come off that kidney (an even smaller tube from that small organ in his small body), and then imagine a tiny and irregularly shaped "bubble/balloon" on that tube. That is what the surgeon had to successfully lance. It was a microscopic job with the potential to have real benefits for Gavin, but it would be understandable difficult to know with visual certainty that the "cele was broken" so to speak upon immediate visual inspection following the procedure.

We'll be back in a couple weeks to take another look using some injected dyes, etc. to see if the bubbles are still intact or if the initial surgery was successful. If he does need a follow-up procedure, it can be done on an outpatient basis. He will likely have his blood pressure more under control at that time, thanks to these new meds. He will also be that much bigger as he continues to grow like a weed!

Sooooo....my instructions for home were to LOVE him, feed him when he's hungry, help him get good sleep and make sure he keeps pooping and peeing. I LOVE these instructions. Indeed, this is my favorite job in the world.

So we'll love him, we'll feed him, we'll give him good rest and we'll watch him GROW! ;0 )

Back Again Tomorrow

2010-03-04T18:26:00.000-06:00

We're off to Mayo again tomorrow to add another member to "Team Gavin".

We will be meeting with Dr. C in the Department of Nephrology.

Nephrology (from Greek νεφρός - nephros, "kidney", combined with the suffix -logy, "the study of") is a branch of internal medicine and pediatrics dealing with the study of the function and diseases of the kidney.

For some perspective, as compared to this "normal" image above:

Givenson does not have a Right Kidney.

He had Ureteroceles ("bubbles") on both of his Ureters - the tubes that allow urine to drain from the Kidneys into the Bladder.

His left Ureter is enlarged so it is much larger than what is shown here. His surgeon said it is actually almost the same size as his colon.

His Bladder, on the other hand, is much smaller than the one shown here.

Tomorrow, we will be addressing the Hypertension/High Blood Pressure we are seeing in little Givenson.

The Nephrologist will work with us to figure out why his blood pressure is high and how to manage this most effectively to protect, in particular his heart/lungs and his single kidney.

It is possible that the surgery he had last week may help to normalize his blood pressure as he continues to heal, but we need to decide if some medications might make sense in the mean time to relieve some of the stress on his little body and reduce the risk of long term damage.

I am eager to hear what Dr. C has to say about our little guy. We hear this physician is EXTREMELY good

so, once again, I am counting our blessings that we are at Mayo.

Prayers for safe travel and good answers/strategies are appreciated...

Saturday Morning Chats...

2010-03-04T12:25:00.000-06:00

I love watching these two together.

They have a pretty special bond...

Our Little Haitian Sensations!

2010-03-03T10:51:00.001-06:00

Arrival Day! Looking Back....

2010-03-02T14:00:00.000-06:00

Gavin came to us on Saturday, January 23rd.

We picked him up from his escorts at The Mall of America here in MN

proving, once again

that you can indeed get ANYTHING at The Mall of America ;0 )

A little jet-lagged....

Proud Host Sister

The Miracle Boy Himself!

2010-03-01T23:09:00.000-06:00

Can you resist my cuteness?

I didn't think so....

A Medical "Intro" from Gavin's Host Family

2010-03-01T22:46:00.000-06:00

Hello, Readers!

I have never blogged before, but I am eager to give this a try!

Givenson/Gavin is on an incredible journey of healing here in Minnesota and specifically at the Mayo Clinic. We are honored to be hosting this little guy and are humbled at the way that so many have come around us to support our family and our very special little houseguest.

To start things off, I'll post a copy of the message I sent out last week while we were at St. Mary's Hospital for Givenson's first series of surgeries. It gives an overview of Gavin's medical evaluations to date. Enjoy....

We have learned since his arrival that Gavin has VACTERL syndrome - a series of birth defects that often present together. There are seven categories of defects (one for each letter). If a child has three or more, they are considered to have the syndrome. Gavin has four.

V - Vertebral: Gavin has some sacral spinal anomalies. On an x-ray, at the base of the spine, we would usually see "headlights" all along the two sides of the spine at each vertibrae. At the base of Gavin's spine, some of those "headlights" are deformed and some are missing all together.

His doctor feels that he will likely walk (he already kicks like crazy and "stands" when held upright) but he may have the chance for his spinal cord to become "tethered" - basically it would attach to one of the vertibrae and then begin to stretch as he grows. This becomes dangerous because a stretched cord can easily break.

He will have a neurologist scan his spine while he sleeps for his second series of surgeries in about 6 weeks. We will know more at that time about what his spine looks like and what issues he might face in the near and in the distant future.

A - Anal: Gavin was born with an imperforate anus - no way for the poop to come out. Normally there is a fistula to another organ - another small opening the body creates to allow poop to come out through the urethra, bladder, etc. Gavin is a very rare case in that there was no fistula at all. The colostomy he was given in Haiti saved his life. On Tuesday, Dr. P perforated the sphincter muscle, pulled down the colon and sutured it to the new rectal opening. (ouch, huh?) Gavin had what is called a "mega-rectum" - it had become quite enlarged from early pressure, etc. so Dr. P did some reconstructive work so he has the potential for better output in the days ahead. He will be on a lifelong colon/bowel program to manage the constipation that is expected for nearly all children with this condition. Still, he should have fairly normal GI function, but will need a good diet, and possible laxatives and enemas, etc to keep things moving well for him.

Right now, he still has his colostomy in place. We will do 6-8 weeks of dilations to the new muscle in preparation for his reconnection and colostomy closure surgery in about 6-8 weeks. There was suspicion during diagnostics that he might have a tumor at the base of his spine called a terratoma. We were pleased to learn that exploration during surgery revealed no tumor at all. It was likely a ball of hard dry stool we were seeing on the x-rays which would have been left from improper or incomplete clean-out of his lower colon during his colostomy procedure in Haiti.

C - Cardiothoracic: Gavin does have a condition called a Patent Foramen Ovale. This is an opening that usually closes shortly after birth. His is not closed, but will likely correct on its own. More worrisome is the size of his pulmonary veins on the left side of his heart. He has what is called pulmonary vein stenosis. The veins are abnormally narrow and are causing his heart to work much harder than it usually would. I was told that some pressures in his veins which usually measure from 1-3mmHg are measuring at about 12mmHg for Gavin. There is nothing that can be done surgically to improve the flow in these veins. The good news is that he may simply grow out of this. Otherwise, we may see the veins stay the same which might restrict some activities later in life, or they may continue to get smaller or not grow with the rest of his body. This would have no good and lasting surgical resolution and would likely take his life. This is a wait, watch and see item. The cardiologist is optimistic and we will track his heart's growth every couple of months for his first year.

T and E are for Tracheal and/or Esophogeal Anomalies. So far we haven't seen those in Gavin.

R - Renal (Kidney): Gavin was born with one functioning kidney. The other kidney never formed. He has what is called a multicystic dysplastic right kidney. Diagnostics determined that it has no function at all so the urologist recommended leaving it in vs. removing it. Both of his ureters had a ureterocele. Basically a "bubble" on the tube that drains the kidney so as his kidney drained, some urine got stuck in the bubble and then the drain got narrowed by the full "balloon". So urine wasn't being eliminated properly and the kidney was stressed and he was getting kidney infections. In surgery yesterday, both ureteroceles were "popped". The surgeon said his one functioning ureter is actually quite large - equal to the size of his colon. Another anomoly, but not of great concern.

Gavin also has a very small bladder with high pressure so he will be on long-term medication to help that bladder relax a bit and not get too stressed.

Continuing in the Urology department, Gavin also has another congenital defect called Chordee and the associated congenital defect Hypospadias. Dr. K will correct both of these anomalies once Gavin is one year of age.

L - Limb: Gavin does not have the limb anomalies typically found with VACTERL syndrome.

During surgery yesterday, Dr. P discovered some additional anomalies. Gavin has a Patent Urachus - an abnormal opening from the bladder to the umbilicus, which usually disolves shortly after birth. His was retained from fetal life and will need to be surgically removed. It also appears he had a single umbilical artery (instead of the normal two) which is actually common when birth defects are present so it was not a great surprise. There is nothing to do about that now, but it is interesting to note.

Finally, we have suspicions of partial or total hearing loss either as another congenital birth defect or as a result of a bacterial infection that he had at birth and was likely exposed to throughout the pregnancy. He will have a full screen in two weeks and we will know much more about his hearing.

Sooooo....quite an interesting medical history all packed into three months of life. We are SO VERY GLAD that Gavin was accepted to Mayo Clinic as it is definitely exactly where he belongs for the very best diagnostics and very best care for his various medical needs. We feel very blessed to be in the care of this great team!

I am in awe of all that God is doing in this little guy's life. He continues to win hearts with the staff here and so many have marveled at the fact that he made it here and is doing so well. His life is a testament to God's incredible mercy. He is a miracle.

Meet Givenson

2010-03-01T09:21:00.000-06:00

Givenson (Gavin) was born in Haiti on November 1, 2009. He was born with an imperforated anus and then abandoned at the local hospital. Before he came to COTP, at 3 days of age, he had a laparotomy to place a colostomy. Without this, Gavin would have died very quickly. Just the way it is, its amazing he even lived as long as he did in Haiti. Gavin is a very special little boy that has defied many odds. When he came to us at 3 days old he was already skin and bones and weighed just over 5lbs. Because he was so skinny, he had to have been born weighing more than that.
Because of Gavin's extensive issues with his colonostomy (which is temporary) and not being able to have his anus repaired in Haiti, we pursused a medical visa for him. We are excited to see what God has in store for little Gavin.