Sunday, October 13, 2013

other kids with special needs

Last month, Chris and I had the opportunity to "take a break" and let the boys spend an evening at the Saturday Night Alive respite program at our church (FUMC Rockwall). It was great to know there were folks volunteering to take care of children with special needs and provide a fun time for them and their siblings so the parents could have a little time off. But even better than taking a break, this past Friday night I had the privilege of being one of those volunteers. 

Friday night, I spent three hours with five very special tweens and teens with special needs. I've been wanting to volunteer for quite a while, mostly for my own selfish reasons.  As I've said before, I often forget Leo has a disability.  Since he's a baby, or actually a toddler now, I don't think we don't get the full picture of what to expect in his future yet. I've been curious to know what it is like to spend time with older children or teens with special needs?  

I was a little surprised by what I learned. About the kids, and about myself.

It hurts the heart when children with special needs cannot communicate their needs to you.  
There was one child in particular who could not communicate his needs. He was very happy when he arrived, but after spending some time around noisy toys and seeing it begin to rain outside, he became very sad. Sad to the point of tears and it broke my heart. We spent lots of time consoling him, and I had the chance to take him for a walk. Once we were in a quieter hallway outside the classroom he was much calmer. Was there too much stimulation?  Was he afraid of the rain, that he could see outside the window? I couldn't help but wonder exactly what he felt not being able to directly communicate his needs? It really hurt my heart.  He finished the evening in a smaller, quieter classroom downstairs and all ended well.

There is immense joy from seeing a child with special needs accomplish something. 
Even though this was my first night to volunteer, there were other volunteers who have spent time with these same children through both the respite program and through the community as well.  One of the volunteers I was working with is a teacher at Head Start in Rockwall ISD. She joyfully shared stories with me of how far some of these kids have come along over the years - physically, verbally, and from a maturity standpoint. Stories from a child who was wheelchair bound all his life transitioned to orthotics and walking on his own, to another who went from totally non-verbal to communicating in phrases. Hearing her stories made me wish I had been a part sooner and witnessed the accomplishments!  Which brings me to the next thing I learned...

The teachers and support staff who work with children who have special needs do it because they love what they do, and they love the children.  
As I already mentioned, I was paired with a teacher from the Head Start program. I also met another volunteer who works at the High School teaching teenagers with special needs, as well as another staff member from one of the local Elementary Schools who does the same.  Why on earth would individuals who work such a challenging and exhausting job all week long want to volunteer at yet another program doing the same challenging and exhausting work? For Free? It's simple. They love what they do, and they love these kids. It really makes me happy and at ease to know I have teachers like this in our district to look forward to working with Leo!

My least favorite thing that I learned... Spending time with older children who have special needs made me more aware of their vulnerability.
I have wanted to believe that Leo will grow up in the same world that Meris and Seth will grow up in. After all, we will give him all of the same opportunities as our other children.  We will have the same expectations of him. But Friday night really brought to my attention the one difference Leo will have going against him - he will be more vulnerable to the world. If he is not surrounded by those who look out for his best interest, if he is not watched over by those who completely love him, he could very easily be taken advantage of. Materially, financially, or worst of all physically.  This scares me to death.  This is an area where I have to pray to God a lot, and trust that He will protect Leo any moment that I am not there to do so. It's because of this realization that I say I was "privileged" to work with these special kids.  Their parents, with the same fears I have, entrusted the safety and well being of their precious children to me. That is a privilege!

I learned that I loved working with these children. 
They each taught me more than I expected, and I loved spending time with them more than I ever thought I would.  

At the end of the night Friday, I was pretty tired.  I looked forward to crawling into bed a little early, expecting Leo to crash since he was up past his bedtime. That didn't happen. Instead, Leo's teeth that are trying to pop through had no mercy. The teething erupted with a vengeance, leaving him screaming inconsolably for nearly two hours. I went from really tired to super exhausted!  At first I thought - why now?  I just gave three hours of my life to help other families take a break... and this is my payback?  Then it dawned on me that this is the life. Now I know "teething" has nothing to do with special needs... but seriously, the moment made me realize in the life as a parent of a child with special needs, there is never a break. 

So with that thought, I highly encourage you to consider volunteering with a respite program.  There is such a need for this in all communities and they cannot continue to run without volunteers.  Being a parent to a child (or in many cases children) with special needs is a very, very hard job.  Parents need to know they have a break coming.  A moment to take a deep breath and be relieved of their responsibilities. Time to reconnect with their spouse, or just time to relax. In the case of one family, time to go to the grocery store!  Spending time with these children is eye-opening, yet so rewarding. 

You won't regret it.

With love,

Joyce & Leo

Monday, September 30, 2013

18 month milestones & surgery. Again!

Day by day, there seem to be very few changes in Leo with regards to milestones (and btw, I decided recently I don't like that word - "milestones"!), but then months pass and Boom!  I reflect on where he started and I'm amazed. Just simply amazed by this boy.

Last week, Leo had his 18 month checkup at the pediatrician. His recent accomplishments include speed army-crawling, speed-cruising, super-transitioning while cruising, and just the other day he let go of the wall so he could pivot his body and grab my hands. The little stinker with "texture aversion" who won't eat table food at home has also been taking bites of table food at school. According to his teachers, he does a great job mimicking his peers. He has tried macaroni, mashed beans, banana, scrambled eggs, and just today blueberry muffin. And he has made it clear that he does not like pears whatsoever.

He's proven to us recently that he can do more than we realize, even though he's still lacking some confidence. We now know we have to raise the bar and Leo will grasp to exceed our expectations!

So back to the 18 month visit, can I be honest for a moment? All in all, his check-up went really well... until a few days later when I caught a glimpse of his report from the pediatrician to Early Head Start. More than half of his developmental milestones were listed as "below expected range for age".

This made me cry. 

Yes, I'm overjoyed by how well Leo is doing. On an "adjusted" chart, he is actually doing well for a child with an extra chromosome. The part that hit my stomach like a brick was the feeling that my baby boy was being judged. And yes, I love my pediatrician dearly. She thinks the world of Leo and is continually impressed by him. But to me, this piece of paper and what was written on it felt like the beginning of a trail of measurements that Leo couldn't live up to. Like a finish line set for the Hare, my little Turtle creeps along behind - albeit with the greatest of effort and the biggest of heart, ever trailing behind. So I'm not brought to tears often, but this did it.

On the same day of my pity party, came a return to the ENT doctor. If you've followed along previously, you may recall Leo had his tonsils removed (along with adenoid removal and ear tube placement) last December. He was 9 months old and afterward, developed a respiratory infection before being discharged from the hospital stay, became dehydrated, and developed pneumonia. All of these brought the most interesting Christmas gift of all - a Christmas Eve and Christmas Day stay in the hospital. This was really sad at first, but ended up making for a very memorable Christmas for our family, to say the least! (Read the post "where did December go?")

At the ENT visit last Friday, Leo returned to be evaluated for what we thought was re-growth of his tonsils that were removed, causing a restart of his moderate OSA (obstructive sleep apnea).  He's been having pauses in breathing at night, with gasps for air again. After peaking in Leo's throat, Dr. Mitchell decided to do a scope to get a more accurate look. What we actually found out was this - Leo's palatine tonsils (the ones that are visual and removed with a standard tonsillectomy) which were removed last December did NOT grow back, but his lingual tonsils (which are usually too small to be seen on exam) became super-sized!

Did you even know that we all have more than one set of tonsils?  

Neither did I!!   

According to the world of ENT, it's somewhat common for the lingual tonsils to peak in size at adolescence, especially in children with DS and obesity. It is rare for this to happen to an 18 month old. Rare. But it happened to Leo.

In light of his OSA symptoms coming back, surgery has been scheduled for November 20th to remove the lingual tonsils. Leo did have eye surgery scheduled for October 16, and that has also been moved to November 20th so he can have both procedures back to back with only one sedation.

While we were initially upset by this news, we aren't totally surprised. Sure, I'd rather not see him go through another tonsillectomy because the recovery is really, really difficult at this young of an age. But I would rather not see my baby boy struggle to breath at night, and continually wake up because of the struggle he is having.

So, there you have it. What's happening and the explanation behind it.



Thank you for always keeping our sweet guy in your prayers. He will need more, come November!

With love,
Joyce



Monday, August 26, 2013

back to school we go!

I couldn't help myself.  Leo had such a great first day back at school (Early Head Start), that I just had to share.

A quick follow-up regarding the feeding plan... Leo's school has been incredible. They were able to set a up plan based on the current federal guidelines for feeding toddlers, and he is set with Gerber Graduates fruit/ vegetable pieces mixed with Stage 2 smooth baby food. This is totally similar to what we are doing at home (providing chunkier texture than Stage 3), and a great start to keeping his progress on track.  We will still meet to set a plan that will grow with him and help challenge him toward overcoming the texture aversion and progressing toward full table food and self-feeding.

We also have a plan for mixing his thickened milk in the mornings in bulk and offering more of his sippy cup too (the other delay we've been working on).  So I have to share  - Leo took 2 ounces from his sippy cup at lunch, and a full 6 ounces from the cup during afternoon snack, meaning he had exactly zero bottles at school today! Yippee!!

Sharing the rest of his day in pictures....

First Day - August 2013 (with sister Meris sophomore & brother Seth pre-K4)
First Backpack!
Happy to go back to school!
Not so happy about his First Shoes....
Overjoyed to see Ms. Michelle!
We are so excited that Leo's lead teacher is Ms. Michelle!  She was his back-up teacher last year, so she knows him so well already.

Leo's lead teacher for 2013-2014, Ms. Michelle!
And now for the biggest news of all today... the text that brought tears to mom's eyes from Allison, Leo's speech therapist....


We celebrate and thank God for every small victory. This is the VERY FIRST TIME Leo has swallowed a piece of "table food" as a self-feeder from his tray!!  (Yes, they are the tiny, soft Gerber graduate apples... but we are overjoyed!) Yay for our Leo, we are so incredibly proud!




The little guy worked so hard and was worn out by the end of the day. 
Goodnight, sleep tight, my sweet boy.

With a happy heart,

Joyce


Sunday, August 25, 2013

goodbye summer, hello school plans

It's the night before the first day of school. Summer has officially OFFICIALLY ended. Wow!

I've been home with the kids this past week (on vacation - ha ha, that is more of a contradiction!) since Chris returned back to work the week before school began. After Monday at the water park, the rest of our week was filled with errands, therapy appointments, school appointments, and generally tying up loose ends to get all three kids ready for school tomorrow. Which brings me to Thursday....

Thursday was one of those enlightening reminders that I have a child with special needs. I say reminder because quite honestly, I tend to forget.  On a day to day basis, Leo is just like my other babies were. He's inquisitive and determined, joyful yet ornery. I know he's hitting milestones later than his peers, but as his mom I guess I've adapted and adjusted to his daily life. Then Thursday came and it hit me in a way I wasn't prepared for.

Wednesday was Leo's back to school "home visit". He'll be attending Early Head Start again this year for daycare. They're a part of our school district program and have been a perfect fit for Leo since there is a 4 kids to 1 teacher ratio, staffed by certified teachers who are trained to work with children who have disabilities. During our visit, we reviewed Leo's progress from over the summer. On the plus side, he's gone from pulling to stand to now cruising. Big accomplishment!  On the minus side, only baby steps dealing with his texture aversion and he still won't eat table food. In my mind, not a big deal - we'll improvise at school just like we have at home. In the school's books - this requires a host of planning, aka... meetings, paperwork, red tape. Three days before school begins!

Thursday consisted of a series of phone calls - the school Family Resources Specialist, the Program Coordinator, the Program Coordinator specializing in Disabilities, the Program Dietician, and finally our Pediatrician. Normally, this number of phone calls wouldn't bother me. But today, I felt my first twinge of "is this what I have to look forward to when Leo starts school?" The conversations included words like 'provisions', 'modifications', 'reimbursables' and phrases like 'federal guidelines', 'physician's orders'. Since the Head Start program is federally funded they must follow guidelines with providing food to the children. I'm not allowed to take food from home, and we have to rely on the school dietician to work with the cafeteria on a planned menu for him.

The problem is, "if" he picks up a bite of food from his tray and places it in his mouth, he refuses to eat it. He won't eat anything that's not mixed with a smooth texture by way of gagging and appearing as if he's choking.

The center can't allow outside food. The teachers can't mix and prepare Leo's food because they aren't certified for "food handling and preparation". The items Leo needs can't be purchased by the center without special approval because foods purchased must meet certain requirements for "reimbursement". The cafeteria who prepares the daily lunches for the children has to meet and agree to whatever "provisions" or "modifications" are being made.

Even though (after a full day of addressing this) we were able to come up with a temporary solution for this week (until meeting and coming up with a permanent one), all of these rules, regulations, and conversations left my head spinning and made me just a little emotional!

For my friends that have a child with a disability, especially those with children in school, have you been there? Are you feeling my "moment"?

But instead of curling up in a ball and waiving the white flag, I had to find my bright side.

  1. Leo is blessed to have parents who will do whatever it takes to help him succeed.
  2. We are blessed that the staff at Early Head Start love Leo and put his best interests at the top of their list.
  3. There have been hurdles and there have been roadblocks in seeing milestones happen... Yet we have continued to see Leo overcome them. 
  4. God is on our side, and through prayer He has shown us this time and time again.
  5. This too shall pass.

This moment just might be small compared to the many we have to come, but I can't anticipate what is to be or be anxious about the unknown.  What I can do is my very best job as Leo's mom, making sure he has every opportunity available to him for his success both today and in the days to come.

I have high hopes for Leo this next school year. 

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds for Christ Jesus."  Phillipians 4

A few fun highlights from Leo's summer of 2013....

My first "Family 5K" (the Must Dash Race, June 2013)
First ride in a swing (Family 5k in July 2013)
I had fun being silly with my sister Meris
I played with my brother Seth. A lot!
I celebrated the 4th of July


I ate ice cream from Ham's Orchard (July 2013)
I had my first trip to the beach. (Family vacay 2013, Galveston Island)
Good night Summer 2013. You wore me out!

With love,

Joyce

Thursday, July 18, 2013

summer fun = milestones galore!

Welcome Summer!  Once summer arrived, somehow I missed a 15 month update. Can you believe Leo is already 16 months old?  I'm happy to say he's striving toward showing his age. This summer, and even moreso the past few weeks, have been filled with new babysteps and milestones. Stay with me until the end though, if you want to see some super cute pics of Leo's first vacation!

Speaking of milestones, Leo is still army crawling and has really picked up speed. He's been pulling up to stand really well since the beginning of June, and we were starting to think he'd never show interest in cruising. In typical Leo (or DS) fashion, just when one starts to doubt or wonder if something will ever happen, there he goes. He took some steps last week while holding mom's hands, then a few days later he transitioned from one piece of furniture to another by taking a few steps, and finally... he is now holding onto the couch and starting to cruise along a little. What do you know... he CAN move his feet.

Leo is also making some new sounds, signing "all done", and making messes. Yes you read that correctly, he is literally finding everything possible to get into and tear apart. From emptying toy containers, to pulling things down from every reachable place, taking clothes out of drawers that are slightly open, even pulling things over on top of himself. Look out world, and anchor it all down... This boy is on the move!

Last but certainly not least, the funnest milestone so far this summer was Leo's first family vacation amd first trip to the beach... to Galveston, TX. I have to admit I was a little bit nervous about how he would travel, his reaction to living somewhere else for a few days, and what his opinion might be (if you don't know already, he is quite opinionated for a one year old...) of the sand, saltwater and hours in the sun. In continued Leo fashion, he never ceases to amaze us. Other than our first night of attempting a later dinner time which resulted in a baby meltdown, Leo was a champ. He adores the beach and had a lot of fun playing in the sand. And eating it. There was nothing but smiles and laughter in the water, even when the waves splashed saltwater in his face. I couldn't have asked for a more easygoing, laid back, and flexible boy.

Check out the fun he had...



He even wore his hat without too much complaint!


Loves, loves, loves his sister...







Happy to have him.  Life is good!

with love,
Joyce

Tuesday, May 28, 2013

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

Thursday, May 16, 2013

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

Saturday, April 6, 2013

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

Wednesday, March 27, 2013

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

Tuesday, March 26, 2013

*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...


video

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

Thursday, March 21, 2013

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

Sunday, March 17, 2013

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