more belated... 14 month update!

My, how time slips away!  Leo is 14 months old, and really soon he'll be 15 months. Before that happens, I better write down a 14 month update.  I'll just pick up right where I left off....

Last month, Leo was scheduled for a swallow study based on recommendations from his pediatrician and pulmonologist. The swallow study was performed mid-April.  Much to my surprise, we found out Leo is aspirating again.  This time, we not only get to thicken but we have to thicken even more (the "honey" consistency). The recommendation was made to vamp up his therapy for dysphagia (weak swallowing) that he's had since birth. It took a while to find a home health agency on our insurance plan but after working that out, Leo had the evaluation yesterday for "vital stim". It's a special therapy to stimulate the swallowing muscles and hopefully increase their function. He should hopefully begin the therapy 2-3 times per week in just a couple of weeks.

Leo also went to visit Dr. Weakley at Children's for our second ophthalmology opinion.  His opinion is ...to not rush into surgery. Hooray!!  I always love hearing that.  Especially since it's been less than 6 months since the previous surgery. We're now patching the left eye for 1-2 hours per day (although I admit, I've been a bad mom lately by forgetting more times than not...), and Leo will follow up in the ophthalmology clinic in July to see if there's been any change, good or bad. Surgery would likely not be performed until after he turns two years old.

Sleep study #3... the results are in, and Leo still has episodes of apnea.  Ugh!!  It's no longer moderate, it's now mild, but he still has pauses in breathing even after surgery to remove tonsils and adenoids. He's scheduled to see a sleep specialist at Children's tomorrow.  I'm not sure what the recommendations will be at one year old, but it will be interesting to find out.  Also on our agenda for tomorrow is a one year follow-up with the cardiologist.  Leo will have a repeat EKG and Echo to see if there are any changes to the PFO (patent foramen ovale). It's actually a very common hole between the top two chambers of the heart. His PFO measured a little larger in diameter than most, but we are still hopeful that it may have closed on its own.  Please say a prayer for that result tomorrow!

In feeding news, there are still baby steps being made toward texture. We found out during the swallow study that Leo has a "texture aversion". He gags just by feeling the textures on his tongue, before the food even gets close to his esophagus.  We are still trudging through the tedious process of slowly increasing textures in his smooth baby food. Oh so slow....

On the physical side of things, just WOW.  Leo has come along amazingly in the past six weeks!  He is not only transitioning quickly from laying down to sitting up, he is army crawling swiftly like nobody's business.  He also began pulling up to stand this past week and has been working on doing that with everything he can get his chubby little hands on!  His crib, the coffee table, fireplace, brother's toddler chairs, the couches, the side of mom and dad's bed, you name it!  The little boy is on a mission to not only stand, but try to climb or belly up onto things and also starting to move his feet a little into cruising mode. He has thoroughly impressed this momma with his physical determination!  He has also given himself a few bruises on the face area when he loses balance, but cuddos to the little one for not giving up.

On that note, I close out with this total cuteness, from our friend Heaven's birthday party this month...

 


with love,

Joyce

the big ONE!

Yes, it was late... but we still had to celebrate! 
Leo turned one year old on March 5, and we finally celebrated the big ONE in April! 

A few highlights...

 "I'm the Big ONE!"

 the Ladies love Leo!

Leo and his best buddy, Josiah

with sweet Carlee

One of our favorite little ladies, Olivia!

"You want me to eat Whatttttt??"

"You want me to do whatttttt????"

 Big brother Seth is so excited that Leo finally got icing on his hands!

"Hmmmmmmm....."

Happy 1st Birthday to our sweet baby Leo!

The first year with Leo was so much fun...We can't wait to see what he has in store for us next...

With love, Joyce

13 month update

Another month has come and gone, and our little Leo is now 13 months old!  So what's he up to, you ask?

As of the moment (seriously, like this VERY moment...), he is wide awake at 2:00 am working to cut another one year molar. That's right, the first molar finally broke through some time recently!  I just noticed that a couple nights ago.  So now, he's working on the second. In typical DS fashion, he is officially getting his teeth out of order. He has two tiny teeth on the bottom front, and one "1 yr old molar"!  Maybe now he will try to chew something.

This month has been a little more eventful than the previous one. He began with a respiratory infection which turned into a second round of pneumonia, but also added a GI illness (like rotavirus, with vomiting and diarrhea) on top of that. That was our exciting Spring Break!  That was also in the midst of about 4 weeks of uncontrolled wheezing.  A visit to the pulmonologist helped with a stronger dose of Symbicort and added Ipatropium for breathing treatments.

At the advice of both his pediatrician and pulmonologist, Leo is scheduled for another swallow study coming up in April. With two rounds of pneumonia within just a few months the concern is that he's aspirating liquids. He's always had a weak swallow (we thickened for like forever...), and previous studies showed traces of aspiration. We're going to check and see if that's reoccurring or worsening.

In my previous post, I gave an ophthalmology update. Leo has extopia, a form of strabismus, where one or both eyes look outward due to weak muscles. His right eye is mainly affected so we're patching the left eye for 30-60 minutes a day, but haven't seen any improvement. His left eye is also at the beginning stage of being affected. Leo goes to see his regular ophthalmologist (Dr. Weakley) in a couple weeks and we'll see if he agrees with Dr. Wang about scheduling surgery.

We also finished the month of March with Leo's post-op sleep study (Study #3).  It's a follow-up to see the results from his T&A (tonsillectomy and adenoidectomy, for obstructive apnea). I was super dreading it since Study #2 was so awful with him waking up no less than every 15 to 30 minutes; but ultimately, it ended up being more like our experience with Study #1, so that was great!  Don't get me wrong, still sleep deprivation for mom... but at least I actually had an hour here and there.  The technician said he looked good with just a little central apnea and only two times with oxygen saturation levels dropping into the 80's, so it sounds like a huge improvement to me.  We should get the official results at the end of April.

For some other fun news... Leo officially ditched the formula and is on all whole milk!! As exciting as that is, it really stinks when he spits up.  Literally.... stiiiiiinkyyyyyyyy! Seriously, I'm so excited for him. He transitioned like a champ in just 4 days total.  He's still having a hard time with "chunks" of food, gagging and nearly choking, so no finger foods yet. But he's been doing better with stage 2 1/2 and some stage 3 baby foods. At least there are baby steps happening...

He's getting really close to succeeding on the transition from laying down to sitting up, and also really close to making baby steps (or baby crawls!) toward real crawling. Still lots of army crawling and getting a little faster at it!  He likes to get on his knees and think about trying to move his knees forward. Sometimes it looks like he's just gonna take off... but then he falls onto his belly. At least he's thinking about it!

Needless to say, based on our little reports, speech therapy and physical therapy are going well. He's at one visit per week on both of those right now. We're super thrilled that Leo's occupational therapist is back from maternity leave and started working with him again this week!  We really missed her, and now Leo will get to work even harder toward his new goals because at his one year evaluation, he met all of his previous goals.  (Big fat yayyy!)

The first year with Leo was quite a challenge, and the second year is also starting to shape up a bit challenging, but it has already proven it will also be tons of fun.  Once again, I want to thank each of you - friends and family - for following his journey.  Most of all, thank you for keeping our sweet boy in your thoughts and prayers at times when he needs them most.

Soon to come.... I'm going to be prodding Dad and Sister to post a thought or two.  Hopefully that will be coming soon!  For now, another attempt to get this little boy to sleep...

With love,

Joyce

patches and prayers

Today, Leo had a little visit back to the ophthalmology clinic at Children's Hospital.  He was checked out at 6 months old and his eyes looked great. Then some time between 8 and 9 months old, it looked like his right eye started to drift outward when he looked at us.  It only happened every once in a while so at first we even questioned ourselves about whether it was really happening!  As time passed we began to notice it more and more...

At his 9 month check-up (when he was actually 10 months old), I mentioned it to his pediatrician.  She gave us some guidelines to go by with the glare for overhead light to make sure we were actually seeing the drifting. This confirmed we were. By 12 months old, the drifting happened more often and was more obvious.

So today, when we visited the ophthalmology clinic at Children's, they confirmed he has exotropia (a type of strabismus). It's a condition that affects the eye muscles and causes the vision to not be in the proper line.  His right eye is in the second stage, which means it has moved beyond when he is tired, sick, or excited, and now occurs just on exam by the doctor. Also, his left eye is slightly affected and it's possible it might worsen like the right eye did. 

So what does this mean?

Arrgghh... daily patching for 30-60 minutes per day for the next 6 weeks. Then a decision to be made about surgery.  He wasn't too thrilled about this at first... but after about 10 minutes (and a big fat bottle) he got used to it!

Since the left eye is also showing signs of being affected, the patching probably won't give much improvement. But we're willing to give it a shot if there is any way to try and avoid another surgery! At this point, he'll probably need surgery within the next few months. If the condition isn't treated and gets worse, Leo will be at risk of "amblyopia" (loss of vision due to disuse). So of course we don't want to mess around with that.

So, please keep our Leo in your prayers. We would sure love a miracle to correct things for him!

Joyce

*milestone alert*...baby on the move!

If I can be honest for a minute, I try not to compare Leo to other babies. I know by the nature of his extra chromosome that he'll take a little longer to do things, and that's really okay. But sometimes, I just forget how old Leo is. If I were judging his age based on milestones, my guess would be about 9 months. If I can be even a little more honest, I do find myself capturing comparisons to his brother and sister. Being a mom to three, isn't that just natural? 

Just to put things into perspective...

When it came to crawling, it seemed to take Meris forever!  She was pulling up and cruising for a couple months. I thought for sure she'd walk without crawling. Then one day, at the ripe age of 11 months, at a music festival in Telluride, Colorado, she began to crawl.  Then along came Seth... who did everything so quickly, I found myself saying "is he old enough to do that already??" He began to crawl at around 8 to 9 months.

And there is Leo. Sweet baby Leo has worked so hard for every milestone. I find myself implementing so much patience that when he achieves something it seems to catch me by surprise. Like he did about 2 weeks ago.  I wasn't prepared to catch it on camera the first time around, but tonight I did...

My little man the army crawler!

Leo works so very hard to achieve milestones like this, and we are so incredibly proud!

:-D

Love, Joyce

first haircut. the big reveal!

In celebration of 3:21 (World Down Syndrome Day - 3 copies of the 21st chromosome), Leo wanted to get all dolled up to show off how he rocks the extra chromosome.

So, I guess it's time for The First Haircut...

At first, he was a little bit excited about it!

Very quickly, the excitement turned into squirming...

But it didn't take long for baby Leo to look like a big boy...

More super cute pics of the new big boy cut to come!

Happy 3:21, my friends :)

love, Joyce

12 months - from quiet to chaos!

The time came and passed, quickly and quietly as can be, in the blink of an eye our little Leo turned one year old. Twelve whole months, just like that!  In addition to his First Birthday....

There were many other really fun firsts this month.  Like his First Train Ride...

First ride in a shopping cart...

First trip to the waterpark (Great Wolf Lodge, to celebrate the kickoff of March bringing in "World Down Syndrome Day")..

and First Circus... (Shrine Circus, complements of the Down Syndrome Guild of Dallas!)...

All of these things, in addition to the routine PT/OT/Speech therapies, follow up visit to the GI doctor, and one year well check-up, made for a fun and relatively "quiet" month.  Until after the circus, that is... because after the three ring circus, came full-blown chaos!

Literally...after the circus, by the end of the day, Leo had vomiting, diarrhea, and a fever of 103.4.  Long story short, following two weeks of fighting congestion and respiratory infection he developed pneumonia. (Our second time to battle this!) He also picked up rotavirus somewhere along the way. It was a week-long battle of germs, fevers, breathing issues, and Leo feeling yuck.

The really cool thing about Leo, though, is that no matter how bad he feels and no matter how sick he gets, he finds some time in there to feel and act okay. In those moments, he showed off a couple new milestones!  That's right, I said our sickly little boy met some other firsts this past week, and I mean milestones.

Like ARMY CRAWLING.  Little boy who didn't want mommy to put him down had to sit in the kitchen floor as she is trying to draw up more medicine for him.  Big brother Seth tried to distract him with toys, but quickly decided to take them away. So what does Leo decide to do? Get down to belly time and scoot himself around the floor trying to get toys from his brother. Along came the Army Crawl! Mom is still trying to capture this on video...

And what's a sick week without a second milestone?  Leo now waves "hi"!

This one is in the pediatrician's office, right before getting the chest xray showing the nasty pneumonia. 

Wouldn't you say we have one friendly, crazy, amazing and adorable little guy?  Yes, I do think so.

with love,

Joyce