the final countdown to another year

"Your 23-month-old: Week 4", was the heading this time.

You know those weekly emails for parents of babies, where you can read little tidbits about what they should be doing, tips based on their age, or insight about what's right around the corner?  I've been getting that weekly email from BabyCenter since I was expecting Leo. Sure, I kept up with them for most of the first year. Interested in the information and reinforced by where Leo was at in his milestones. But close to the first birthday, as Leo started to drift somewhere behind the expected milestones and the information seemed geared toward a toddler instead of my baby, I stopped paying attention and just started deleting them. 

Until this one arrived. This one caught my eye. This one cemented the fact that my baby boy, my little guy, my now toddler, is on the eve of turning 2.

The countdown is now on like no other. The last "monthly" birthday has come and gone, 1 month old to 23 month old celebrations have passed, and soon he will only be 2. Just plain and simple 2.

Excuse me as I get into my feelings...

Leo is my last. The last one to cuddle, to rock in the middle of the night, to play pat-a-cake with. Thank the sweet Lord he is my last one in diapers! But even still, he is the last to look up at me with that sweet little face and hold on to my leg, unable to speak yet what he really needs but able to communicate it with his eyes and his voice. The last one to drool on me, have the snot wiped away with my sleeve, to be carried around until my shoulders hurt, share with me those giggly belly laughs, and capture me with the rosy chubby cheeks and big blue eyes. To pull my hair, scratch my hands as I struggle to get him to sleep, wake me night after night after night with teething, scream when I put him down, and yes... he is my last baby. 

And now, he is truly in the last few days of being my last baby, because in less than 1.5 more... he will only be my toddler.

With Leo, I've had a full two years to enjoy his being a baby. I think he knew that. With my first, I looked forward to each milestone and checked each one off like clockwork. For the second child, he flew through each milestone so quickly I barely kept up. With both, the year of being a baby whizzed by. But with Leo, he took his time and allowed me to savor each moment with anticipation and celebration. His time as a baby stretched fully through 23 months, but there is nothing I can do to slow down time or stop the process.

When you're expecting a child with Down Syndrome, you encounter lots different reactions and comments. One comment I remember is "you'll get to enjoy your baby longer." It was confusing to me at the time, but now I understand. Now I know, she was right. Yes, I did. Twice as long! I consider myself blessed.

Because now, my baby boy will be no more. My toddler who just began walking steadily at 23 months and is now walking all around the house, is walking right into a new phase. 

I'm being honest when I say I'm sad to say goodbye to my sweet little baby... 

yet somehow, I'm excited to welcome him to this new adventure of toddlerhood, and to see him growing into who he is meant to be. 

with love,

Joyce

A New Year. Leo's 2013 Wrap-Up!

November and December were absolutely the busiest months of 2013... weren't they?  Now that we're in agreement, it's time for Leo's 2013 Wrap-Up!

Backtracking just a little, Leo finished out October 2013 with a round of pneumonia.  This was pneumonia round 4 for him. It made mom feel like a bit of an expert on the symptoms and luckily it was caught early. After a full month of antibiotics, it was time for another big surgery (number 2).

On November 20th, Leo had a combo surgery (two different procedures). First, surgery to remove lingual tonsils (his palliative tonsils were removed at age 9 months), clear out any regrowth of adenoids (there was none, yahoo!), and a deep cleaning of his ear canals for tubes to function well. The second procedure was bilateral eye muscle surgery to correct exotropia. Due to his low muscle tone, Leo's eye muscles were not strong enough to focus properly. Surgery to correct this will keep him from losing function of his eyes and losing actual eyesight. Both procedures were a big success, both immediately and on follow-up. The lingual tonsil removal was supposed to be an easier recovery than his first tonsillectomy, or at least it is for most. Being the usual "exception" that he is, it was just as difficult for Leo the second time around. He refused food, even strictly pureed or ice cream, for a full 15 days!  He lost more than 10 percent of his body weight and looked pitiful. He also developed a respiratory infection right after surgery that led to the return of pneumonia (pneumonia round 5). Also in typical Leo fashion, he regained everything nicely and then some, and recovered well. 

Another highlight of November was the Thanksgiving celebration with families of those kids featured in the Down Syndrome Guild 2014 Calendar, hosted by Elvis Andrus of the Texas Rangers baseball team. We were extremely privileged to be a part of this special event! Let me just say what a caring, loving, and selfless person Elvis Andrus is.  He spoke about how he spent time giving and sharing with families of children with disabilities in his home country (Venezuela), and he wants to do the same for families here because he holds a special place in his heart for children with disabilities.  Over the summer, he gave of his time for a photo shoot for the DSG calendar and connected with the little lady that he posed with.  Because of that, he wanted to give more to the Down Syndrome Guild.  Not only did he put on a beautiful, catered event for our families, he also gave us a spectacular gift basket and our Thanksgiving turkey.  Without hesitation, I canceled my order with Tom Thumb (take note that Leo was less than a week post-op at this point!), and we savored our very first Kuby's smoked turkey.  I'm now completely spoiled, because it was one of the best turkeys I've ever had! 

Elvis donated $10,000 of his own money to the Guild.  How cool is that??

Another special part of the evening was the amount of time Elvis took to pose for photos and give autographs.  We, and especially our children, had his undivided attention for an evening. I loved seeing him carry on conversations with extreme patience, smile genuinely and hug freely. He impressed me. 

Leo was a Superstar on the news in Dallas that evening! 

Leo was only five days post-op for this event.  We made sure he had plenty of pain meds on board before going.  As you can see in his eyes, he was not himself. His eyes were still red from surgery and he just looked like he wasn't feeling well. He was such a little trooper, but the evening definitely had it's toll on him. By the time we left, he cried all the way home!  It was one hour and 15 minutes in traffic with a non-stop crying boy. Pitiful... but a memorable time. We are just glad he won't remember being in pain!


December was filled with Christmas parties, Santa, a trip to see Ice at the Gaylord, and fun times with family. We had a LOT of family time (as our teenager will testify!) over "Christmas Break".

On Christmas day, Leo even opened a few gifts on his own this year. He still had the attention span of a one year old though. Ha!  He really enjoyed having a lot of time to play with brother Seth over the break.

Don't let this picture below fool you... he did NOT enjoy the cold air at the Ice exhibit....

... and Santa was also questionable, but tolerable!

2013 went out with a bang when we celebrated Grandma Elsie's 100th birthday!  After ringing in the New Year at the Hampton Inn and Suites in Kerrville, Leo had a blast at her birthday party on New Year's Day.

  

We were blessed beyond measure this past year. Looking forward to a fresh start that brings new adventures. I hope you will continue to follow Leo on his journey, as we share the story of how he blesses our lives every day.

Happy 2014!

with love,

Joyce

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

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

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

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

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