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!


Tuesday, March 26, 2013

*milestone alert* 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!


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,


Monday, March 4, 2013

the birth story

I've read several birth stories from other families who delivered (unexpectedly) a child who they didn't realize had an extra chromosome. As for us, we already knew our Leo had a little extra something special. So when it comes to Leo's birth story there are no days of worry and surprise, no moments of disbelief and fear. In fact, we had five whole months to know about, adjust to, and check on the health of Leo with regards to his Down Syndrome.  We had plenty of time to carefully plan for his safe arrival.  Because of that, I'm now a firm believer that there are great benefits to knowing ahead of time the makeup of your baby... but that, my friends, is another blog post in itself.

Instead, I want to tell Leo's unique birth story.  Because while we attempted to know everything we could about him and be totally prepared to joyously welcome him into this world, when it came time for Leo's birth, well... God taught us that we were most certainly NOT the ones in control.  And here is Leo's story...

It was March 4, 2012, the last day of week 36 for this very pregnant momma. I had been nesting off and on, to the point of beginning to make sure loose ends were tied at work each day before I left and that everything was already packed in my car for the hospital. Since Meris had arrived at week 36 on the dot (almost week 29...), and Seth had arrived at week 37+2 days, I knew Leo would come any day now. March 4 was a beautiful Sunday from what I can remember, a nice chilly spring-ish day.  

We had gone to church on Sunday morning as a family, and it was now Sunday evening. Chris and I went to church again leaving Meris to wait for Youth to begin and dropping 3 yr old Seth in the childcare room with his dinner. We headed over to the building next door for a Bible Study and dinner, meeting up with friends.  After the Bible study, we walked to the main building to pick up Seth.  The lights were off in this area as we walked to the entrance we needed, only to realize the doors were locked.  I was achy and tired from a long day. "Why don't you cut through the playground to get to the front of the building, and I'll drive around to pick up you and Seth", I said to Chris. He agreed and I was happy not to have to walk any farther!

He went through a gate and began to walk through the playground toward the front of our church as I walked to the driver's side of our van which was parked in the dark only a few feet away from me. Before I could realize what had happened, I felt my feet taken out from under me as I tripped. I felt my body go up in the air and down toward the ground almost in slow motion, and instinctly put my arms down to try and catch myself... but it was no use, as I landed with all my weight flat on the right center of my pregnant belly.  I didn't realize there was a parking barrier/block in my path to the car door, which I had tripped over in the dark. I was startled, shocked, and in pain, but managed to call for Chris "I fell!" He came running back toward me. 

With my stomach immediately beginning to tighten and soreness coming over me, he managed to pick me up and help me into the van.  We were both frightened and trying to decide what to do as quickly as we could. First task, gather our children. After a quick drive around to the front of the building, dialog with friends, confusion about what we should do and which hospital we should go to (nearest ER, or the planned birthplace - a 30 minute drive), we decided to leave our children at home with friends and make the trek to the planned birthplace.  My fear was being admitted and possibly giving birth at the local hospital, instead of our planned location which had a level 4 NICU.

We arrived at Presbyterian Hospital of Dallas with me in tears and with Chris in a lot of fear. I hadn't felt Leo move since the fall.  He had gone from completely active to completely still, and it was scary for both of us.  Here we had spent months carefully watching Leo's organs, planning for his health needs, and making sure his little nest inside of me was perfectly cared for...only to come this far and possibly hurt him with a fall on the hard asphalt?  It was heartbreaking.  Once we began to get settled in the Labor and Delivery area, I realized I had cuts on the hand, knee and foot of the side that I fell.  I told my story about the fall over and over to multiple staff, as each one got involved in my care.  I thought, "wow, can't they just read the note? Or maybe no one has had time to write one..."  Although later Chris and I discussed how they probably had to make sure this wasn't an instance of abuse but having me tell the story over and over, looking for things that might not match up.  How sad!

Soon after our arrival, I began to feel Leo move occasionally. On the monitors, he looked great.  Blood was drawn to make sure there was no bleeding occurring by me and by him.  One of the perinatologists from the practice who had followed me came in to perform a level 2 sonogram and check in on Leo.  It showed that his status was beautiful!  With every test, I began to relax more and with every relaxing moment, I ached more from the fall.  

The perinatologist decided to keep me overnight for observation, since there was a chance the fall could set off labor and I was already having mild contractions.  Since our drive to the hospital is 30 minutes and I am known to be a very fast laborer, she didn't want us to worry about having to drive right back in. Chris and I settled in to an overflow area and the monitoring continued.  

Soon it was early Monday morning, which quickly turned into almost noon.  My OB rounded to check on me and saw that I was actively contracting. She said this could also be caused by dehydration, so she ordered an IV for fluids and said she would check on me in a few hours. If I was still in active labor, we would follow through with our planned c-section.  Wow....that was hard to believe!  But when she returned around 4pm and confirmed that I was not only continuing to contract in active labor, but had continued to dialate, we were immediately taken to labor and delivery to prepare for Leo's arrival.  

After one very sleepless night....

At 5:27 pm.....

We welcomed this little bundle into the world!!

Leo John Christopher Ghormley, weighing in at 8 lbs...

who chose the peak of excitement to make his grand entrance.

Happy "birth" day, my precious child!

I'll love you forever,