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

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