Monday, July 2, 2012

Leo's June update: the business (busyness) of Down Syndrome

Has it really been about a month since Leo's given you all an update?  Wow!  I guess this is what happens when mom adds "work" back into her schedule...

So needless to say, I went back to work full-time on June 4.  I still can't believe that was almost a month ago!  Chris is out of school for the summer so dad is in charge of Leo now and doing a fabulous job!  Sure, there've been a few tough days.  Like the second day when I received a text saying "I quit.  I'm going back to school!"  Leo has missed mom once in a while. But all in all, he and Leo (and Meris) have been faring well and have gotten into a great routine.  Seth joined them all on summer break starting today, so now the real party begins!

What has Leo been up to, you ask? 


He had only one visit from the speech therapist, since he's doing so well with eating, and two visits with the developmental therapist this past month. His developmental therapist Heather is impressed by how far he's coming with holding his head up and rolling over! And with his smiling and interaction too. He's enduring tummy time like a champ.  He rolls over both ways, which means he can end tummy time whenever he wants to! The one thing we're really struggling with is how he favors looking to the right which is causing flatness on that side.  Little guy has too many other concerns going against him, so the last thing we need to deal with is a helmet to reshape his head or physical therapy to strengthen the left side... so we're working fast and furious to keep him looking and turning left as much possible.  What a challenge! Leo also had his first physical therapist assessment and started PT visits this month. 

A "little" milestone alert ~ Leo's now reaching for things.  Like mommy's hair, toys, ...... air! He likes to hold his right arm up in the air even when nothing is there.  Honestly, he looks like a little conductor. With his genes, I'm sure he will be!  "BIG" milestone alert ~ He rolled over from back to front on June 23!  He tried so hard to make it happen, and we were excited to see him do it.  Now he does it almost every day.

Just because Leo likes to keep the excitement going, he gave us a little scare mid-June.  If you've read my previous updates, you know he's been on a heart-apnea monitor since the beginning of May. Since he has had difficulty with swallowing, he was having issues with refluxing and then choking.  After limiting his bottles to 3 ounces for about a month, he was doing so well that I was at the point of considering asking the pediatrician if we could quit using the monitor.  It had been a couple of weeks since a single alarm sounded!  But on June 13th, Leo's alarm started going off repeatedly.  Not for the apnea part though (i.e., stopping breathing due to choking), but it was signaling a low heart rate. That was a first for us and quite a bit scary! A newborn "normal" heart rate resting is between 80 and 120.  We thought his low rate was set at 80, but found out after a SECOND episode of dropping heart rate (just this past week) that it is set at 70.  After getting the data downloaded by RT and reviewed by the Pulmonologist, we found out his heart rate has been dropping into the mid 60's.  The first incident went on for 3 and 1/2 hours, but the second one only lasted 1 and 1/2 hours.  It might be that dropping into the 60's in deep sleep is his "normal". But because of his DS and the potential for other issues to be considered, he's being scheduled for an in-depth sleep study where his breathing, heart rate, oxygenation levels, and a few other things can be reviewed.  Like I said, never a dull moment!
Now that Leo's getting a little bigger and older (his last weight was 12.5 pounds), we were able to increase his feeding to 3.5 ounces make that 4 ounces!  I was worried about how he would handle that. He's been spitting up more, but he doesn't seem to be refluxing any more than he was... so it seems to be going well.  And no choking... which is the best news!

Leo had his second swallow study on June 21. 



After two and a half months of thickening formula, his swallowing has improved to the point of NO MORE THICKENING!  Did I really just say that?  Because I spent so much time battling this issue, that I can't believe we actually get to stop doing it... But YAY doesn't even begin to describe how I feel about this.  The only time we need to thicken at this point would be if he gets sick and has to drink water or pedialyte... and I'll go with that!!  He'll have another swallow study in about two months, and hopefully that will be the last one.  Hoo! Ray!

Last but definitely not least, we've had multiple visits with the staff at the Early Headstart program.  After dwelling on our options for Leo's childcare starting in August, we've decided this will be the best option for him. Rockwall is lucky enough to have an Early Headstart program, and they reserve a percentage of their spots just for little ones with disabilities.  Leo's group will have a smaller teacher to child ratio (1:4, versus the 1:8 in tradition daycare).  He'll have CERTIFIED teachers working with him.  The teachers have training with all aspects of learning and physical disabilities. If anything new comes up that Leo has to deal with, the teachers will also receive training for his specific needs.  And our ECI therapists rave about how wonderful the facility and staff are!  Aside from being home with mom or dad, we couldn't help but feel this will be the best option for our wee guy.  We are so very excited that he was accepted into the program and found out about a week ago that his spot will be ready for him in August.  Thank you Lord for answered prayers!

Just because I have to end this update with a smile, watch the video below and see how only Meris can bring out the sweetest smile in little Leo.  Honestly, I don't know what makes me laugh more -- Leo's sweet smile and giggle or Leo's big laugh in the background!


video


With Love,

Joyce

3 comments:

  1. Awwww what a wonderful update it sounds like he is doing so well. I'm really pleased for you guys and that's great you got him a spot in early headstart.

    LOVE the video, what a huge smile. My older kids could always get the biggest smiles from their baby siblings as well.

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  2. I am glad you have found Early Headstart program & your prayers were answered. I lot of positive news to be thankful for. The video is precious, what a sweet smile.

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  3. I can't tell you how wonderful Early Headstart will be for Leo. We are so excited! They provide all necessary training for their teachers (yes - CERTIFIED Teachers, not just daycare workers... although nothing against them, because I love Seth's daycare too!). But for Leo's medical needs - those we know about or any others yet to come - they will get training needed to care for him. He will be in such good hands. We are also blessed with ECI services. I need to blog about them. People don't realize all they offer!

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