Wednesday, July 25, 2012

blessed by Four Months

At the end of my last post, I teased you with something Leo was up to last weekend.  He spent some time with our good friend and photographer Amy Efeney.  Or as Seth calls her, "Miss Ammy"! 



Below are a few of my favorite moments Miss Ammy captured
on camera of Leo (4 mos) and big brother Seth (3 yrs)




Leo was kind of sleepy, not in the mood to smile, and the outdoor glare made him close his eyes a lot.
Despite all that, we still have some sweet shots....








and Amy's personal favorite is...


Oh how we love our sweet Leo!

Love, Joyce

Monday, July 23, 2012

4 Months, growing + the big Sleep(less) Study

July has been a busy month for Leo, and last week was no exception. He's been plugging right along with therapy visits, and even making headway with some milestones. Like one biggie - grabbing at and holding on to things.  Like his own feet!  SO utterly adorable. But then, I am a little partial...

Speaking of last week, it was Leo's 4 month checkup. Can we please slow him down already?! It was a good visit, other than the shots and fever that goes along with those. He's holding steady in the 50th % in length and 25th % in head circumferance, but his weight dropped from 25th to 20th % (at his whopping 13.1 lbs).  While 13 lbs sounds like a lot (and yes, we should be thankful that he's even measuring anywhere on the "typical" pediatric chart at all ...having DS), let me impress upon you how much smaller he is than our first two kiddos.  For example, Seth weighed over 13 lbs at his TWO MONTH check-up.  Both Seth and Meris were in the 90th % of weight by 4 months (and over that for length...) so it's a little strange for me to have a "littler" one!  But he's growing somewhat steady, and for that we're thankful.

The other two big topics of discussion for the 4 month check-up were (1.) the flattening on the right side of his head, along with mis-shaping of his forehead, which is now considered moderate, and (2.) the seemingly neverending heart/apnea monitor coupled with the sleep study that's been pending for several weeks now.

Plagiocephaly is the diagnosis for Leo's head.  It's pretty common, and I'm sure you've all seen the little ones wearing the "helmets".  Some babies are affected more easily and Leo seems to be one of those.  We've been trying to redirect him toward the left side for over two months now with no success, so he's scheduled for an appointment with Cranial Technologies on Tuesday to see about a "DOC Band"... or as we like to call it, a Superhero Helmet. 

As for the heart/apnea monitor, neither the pulmonologist nor our pediatrician feel comfortable giving an "end date" for using it.  In fact, after reviewing the data downloads Dr. London saw that Leo has actually been having apnea along with bradycardia (low heart rate). I did my own research when this began and found that those two combined put him at risk for something more significant.  Of course I tried not to think about it, because what's the use in adding unnecessary extra worry?  Even so, as we discussed things at his 4 month checkup Dr. London finally said the words out loud that I've been avoiding "...the risk of SIDS." Even though we're beyond ready to be done with this nuisance of a monitor -- because believe me, it's not cheap! -- the bottom line is that we're blessed to have it there to alert us when he has issues.  Weeks will go by with no alarms, Leo looks and acts healthy, and I think "he's doing great, does he really need this?" Then a night comes along like last night, with both apnea and low heart rate alarms, and I'm reminded once again that it's quite possibly our saving grace.  With the issues continuing even once in a while, we moved forward with the sleep study which we're hoping could provide some extra insight.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

So last Friday, with about 3 hours notice (he was put on a standby list in order to get him in more quickly... since the wait time for sleep studies is running about three months out!), Leo and I headed to Children's Medical Center for our little adventure.  We'll be waiting about 2 weeks for the results.  In the meantime, here's a glimpse at our adventure:


So many leads to stick on, but what a trooper!


Sensors in the nose and the bandage cap were
 a little more than he could take...

 
Soon, he started to settle in for the night.



Finally getting some sleep, but lots of tossing and turning. Especially for Mom!



And the next morning, a "sleep study hangover"...!


A little teaser for the next post coming your way, and a sneak peek at what Leo was up to yesterday...




More to come soon!!

With Love,


Joyce

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