Sunday, August 26, 2012

everyone deserves a sister like Meris

Meris was an only child for 10 years, until Seth came along.  She quickly understood what it meant to be a "big sister". By the time Leo arrived, she was 13.5 years old and had the sister routine down pat.  At first she didn't understand what it would mean to have a little brother with Down Syndrome.  Quickly she came to realize it only meant having another sweet baby brother to love.  Leo has stolen her heart and brought out the best in her. She is the one who has made him smile the most, the one who first got him to laugh, and she makes him feel completely and unconditionally loved.  She can calm him most easily, second to mom of course, and is just a natural caretaker.

Leo has been so blessed to be home with our family for the past (almost) six months.  Three months with mom, and the entire summer (almost another three months) with dad.  All the while having Meris to step in and watch, care for, and play with him. 

Tomorrow, Meris will have her first day of high school. Tomorrow, Leo will have his first day at daycare.  Even though I'm excited for both Meris and Leo, to see them each grow as they take their next step in life's journey, I'm sad to see summer end and our time spent during the day with Leo cut shorter.  I can't thank our sweet daughter enough for the hours and love she has shared with her baby brother for the first half year of his life.  He clearly adores his sister!  Here are a few glimpses of some of their moments together...

 How do people make it through life without a sister?

 A sister is a gift from God, sent from above to make life worthwhile.

 A sister reaches for your hand and touches your heart.

Best friends we'll be, my sister and me... 

Everyone deserves a sister like Meris...

with love and a full heart,


Thursday, August 23, 2012

the ENT visit. Facing our biggest decision yet...

Sometimes being a parent is really, really hard.  This has been one of those times.  It's a hard job being responsible for the life of a little person, a helpless little person who can't make decisions for themselves. It's a struggle to know you're making the right ones for this little person. There's also a lot to be said for a "parent's intuition". Which brings me to our dilemma with the ENT visit...

Just to recap -- it all began with the swallowing issues Leo had from birth. Then it was worsened by the reflux within the first two weeks of his life. Which then led to the choking when he refluxed, which ended up awarding him the grand prize of the heart/apnea monitor.  If you've been following Leo's blog so far, you know he's been adorning the heart/apnea monitor for several months now. It was by chance through this little segway of his journey, a bigger issue was discovered -- Leo has apnea with bradycardia. In other previous updates, I've talked about the big sleep study which revealed obstructive apnea and his pediatrician's concern of a "floppy airway". Okay, so now that we're all up to speed, here's the update on the ENT (ear nose and throat) visit....

Ten days ago, Leo had a first visit to the ENT. We were somewhat prepared for the possibility of surgery being recommended for a "floppy airway"; however, most of the way the actual visit went we were NOT prepared for. We didn't expect Leo to be herded in, quickly checked over, and then handed a list of surgical procedures (5 to be exact...) that he would be scheduled for within the next two to four weeks... with little to no explanation as to why these recommendations were being made so abruptly.  We asked many questions and felt as if they were only answered halfway.  We left the appointment feeling a bit shell-shocked and completely uneasy.

That's really no way to enter scheduling a surgery - a FIRST surgery - for your five month old baby, now is it? This wouldn't be an outpatient surgery.  Oh no, it would require at least one night in ICU, plus another two nights as an inpatient. With our questions still lingering, we honestly couldn't imagine this ENT doctor being the one to hold our hand through the process.

Instead, with the help of a close friend and her wonderful network of people, we were able to get an appointment very quickly to see another ENT specialist for a second opinion.  First and foremost, we wanted to make sure all of the procedures being recommended for Leo are really needed at this point in time and safe for him at this age. Second of all, we were searching for someone who would feel like the right fit when it comes to communicating with our family.

So yesterday, with a pending surgery date looming for September 14th with ENT #1, Leo saw ENT #2 -- Dr. Mitchell at Children's Medical Center in Dallas.  Even before he shared his recommendations, we found him to be a perfect fit.  Maybe it was that he asked questions that were not addressed by the first ENT; maybe it was that he suggested some risks that were not previously addressed, or maybe... just maybe, it was (after Dr. Mitchell left the room to take a call from another physician regarding another urgent patient)that his nurse said "you know, you've come to the expert for your son's care. You can Google him and see he's written paper after paper about children with obstructive apnea who also have down syndrome."  Little did she know, I already had!

First, Dr. Mitchell performed a nasal endoscopy to take a look at Leo's throat, airway, tonsils and adenoids. This was done by placing a small tubing (the size of a feeding tube, with a light and tiny camera on the end for viewing) into Leo's nose, and feeding it down through his throat. Not much fun for Leo, even less fun for Mom, but we got the job done! From this view he could immediately see no problem with his airway.  Hooray - because based on this we were already minus one surgical procedure! He could see a lot of redness and inflammation from the reflux, which we thought was pretty well controlled but apparently the acid is still a real problem.

Leo's tonsils and adenoids are both large for his age.  They don't even begin to peak in size until closer to age two, and they are the culprits of the obstruction and apnea. Dr. Mitchell's first theory is that the reflux is contributing to enlargement of the tonsils and adenoids.  If his reflux is treated more aggressively, this may help things calm down without removing them right now. Since Leo's apnea is considered moderate (about 12 apnea events per hour during the sleep study), right now it's safe to wait a few months to give him time to grow - which could also help make the apnea less severe.

Even though Leo has no major heart defects from his trisomy 21, Dr. Mitchell explained that surgery should always be the final option for a child with Down Syndrome because of the potential for new cardiac complications due to anesthesia (something that wasn't suggested at the first ENT visit).  He recommended that he be cleared by Cardiology prior to any surgery (also not previously mentioned). Can you see a trend here that may have supported our parental instincts?

The only bad news -- there's no guarantee that the bradycardia will go away with the apnea decreasing or going away.  So regardless of surgery, there's no guarantee as to when we can ditch the heart/apnea monitor.  It will still be a "wait and see" kind of deal.

Our final decision regarding the ENT recommendations?  ....We will wait until December to make a decision. Leo will go back to his GI doctor this week to find a more aggressive plan for treating the reflux.  Then in December, as long as his symptoms don't worsen, Dr. Mitchell will take another look at him through nasal endoscopy and probably another sleep study.  If Leo is the same, or worse, then he will proceed with removing tonsils and adenoids at that time. He'll get a bonus of ear tubes (as most kids with DS eventually need them), and also have an ABR (auditory brainstem response - a specialized hearing test that is done while he is sedated, as most children with DS have adverse effects in hearing).

At the end of the day, it sure is good to have a resolution.  It's even better to feel totally at peace with it!  In the big picture, we know this is a minor decision compared to what some of our little friends with DS have been through. But this was our biggest decision to date. 

Thank you for your thoughts and prayers for Leo, each and every day of his life.

with love,

Tuesday, August 21, 2012

A First Milestone. Cereal from a spoon!

Now that Leo is five months old, and after a visit to the GI doctor about two weeks ago, we got the go-ahead to begin spoon feeding cereal.  Yay for Leo! 

Who knew that spoon feeding an infant with Down Syndrome could be such an adventure. There are different things to consider -- like the depth of the bowl in the spoon, how far to push back the cereal, or how to get into his mouth past his tongue!  The bigger Leo gets, the more I notice the size of his tongue. It's naturally wider for a child with an extra chromosome and he seems to be sticking it out more and more. He pushes it out against things that are put into his mouth. He blocks things that are trying to go into his mouth.  Are you getting the picture about our first experience with cereal on a spoon here???

It goes without saying that his first bowl was very adventurous.  Sit back and enjoy, as always, the many expressions of our sweet Leo and his first bowl of cereal. As only he can express it...

So... my mom is making me eat this stuff,
and I'm not so sure about it...

In fact, I don't think I like it one bit !

Okay now, someone make this woman stop!

Oh... wait a minute, maybe it's not so bad afterall...

Hey, yeah... I think maybe I like it.

Okay, yeah, I do!  I DO LIKE IT!!

Oh, how we love our Leo!  Just a couple more weeks and we are on to sweet potatoes...


Monday, August 20, 2012

the DOC Band (...journey toward a round head)

Pretty quickly after birth, Leo began to favor looking toward his right side.  Little did we realize that would cause his skull to quickly become misshaped.  By two months of age, we began doing everything we could to get him interested in looking toward the left. With no luck!

In July, when he was four months old, our pediatrician referred him to a wonderful place named Cranial Techonologies.  We had no idea how much Leo's skull had been affected until it was pointed out to us. He had flattening on the right back side, flattening on the front left, facial assymetry, and his right ear was shifted higher than the left.  When he had photos done, each side of his face (when put side by side) looked like two different babies.  It was so odd!

We also didn't know the changes in his skull has a diagnosis -- Plagiocephaly.  There can be several causes, but for Leo it was primarily due to "back sleeping". With Positional Plagiocephaly, normal growth of the skull is restricted because of persistent, chronic pressure of lying against that area. In Leo's case, the right back side of his head. This can also cause the brain to shift inside the skull, causing other areas of skull growth to shift - like in Leo's case.

Have you noticed how many babies you've seen with these little helmets on?  Since 1992, babies have been given the recommendation of black sleeping to lower the risk of SIDS.  While SIDS has decreased by 50 percent, Plagiocephaly has increased six-fold with the 700 hours that an average two month old spends on their back sleeping.  The solution?  A custom "molding helmet", to redirect the growth of the skull. 

Here we are at Cranial Technologies, with Leo going through the first step toward a custom molding helmet. Our little "robber"...!

And one week later, his not-so-happy-face in his new helmet.

As you can see, he's getting used to the idea. Just a little...!

Maybe adding a little Boy Bling will help...

Or some loving support from big brother can make things better :)

And so he continues... the journey toward a round head!


Monday, August 13, 2012

helmets, breathing, and spoon feeding the boy who makes us smile

It never ceases to amaze me how busy Leo can keep us!  In the past three weeks, he has obtained a DOC Band (cranial orthotic for plagiocephaly, i.e. misshaped skull), followed up with the GI doctor, began eating cereal from a spoon, and launched a new medical path with the ENT due to the non-optimal outcome of the Big Sleepless Study.  Whewww.  All that, plus his routine visits with the OT, PT, and Speech Therapist. Why yes, he is quite the busy boy!

The DOC Band

this was such an interesting and cute experience, that I'll make time for a separate post on it. So, more to come...

The GI follow-up

Basically, Leo is doing much better with his swallowing but not as great with his gaining weight. We think he looks like a little pudge, and perfect in every way; however, his GI doctor thinks he needs to vamp up the eating and growing. So we were finally given the go ahead on eating cereal. Woo-hoo! It was an awkward start with lots of tongue protrusion (although, I remember Meris and Seth doing a lot of the same! Leo just happens to have a little more tongue to stick out...). But after just a few meals, he's made great progress.  He actually swallows more than he wears!  Again, another topic of uber-cuteness, so I will do another post all it's own to share with you.  Here is a sneak peak though....

Is he priceless, or what?!

Results of the Sleepless Study, and the Big ENT visit

Yes, we finally got the results of the sleep study from July 20th.  I was told by a couple of friends whose little ones with DS underwent the same study to expect abnormalities, so this didn't come as complete surprise.  What we did find out (that is a bit concerning) is that Leo has a floppy airway. This is common with DS, and also common in younger infants.  But the bigger concern is that this is likely the contributing factor to his apnea with bradycardia (the pauses in breathing, coupled with drop in heart rate).  In fact, from the last download covering a four week period, Leo had nearly a hundred incidences of this happening.  Even though that sounds like a lot for four weeks, that's actually fewer incidences than the previous monthly download. Yikes! Needless to say, there is still no end in sight for this heart/apnea monitor since it alarms us when he is having a more severe episode that needs immediate intervention. So what do we do about this?  We aren't sure yet, but we're meeting with an ENT specialist at Children's today to discuss whether or not Leo will need surgery to correct his problem.  Please say a prayer for wisdom for the doctor, and for us to feel like the right decision is being made.

Until later...

"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2.

with love,