#7

Nope #7 is not referring to Cate's age in this post.  Last week we spent a day at Children's Hospital for Cate seventh set of ear tubes.  7 - seriously? in a 7 year old little girl - its just crazy.  Want to know something even stranger, Cate has never had an ear infection.  She got her first set of tubes in March of 2007 (1 year 3 months old) after she had failed god knows how many hearing tests.  (I will never forget her first hearing test in the NICU.  She failed just as a nurse had warned me she probably would but the audiologist said "I like to think of them as little human beings".  I choose to think she was referring to babies in general because she really was a gentle and nice if a little flighty person which makes the statement just funny.)  We learned during that first surgery that Cate's ear canals were extremely tiny and crooked.  After that first set of tubes the doctor told us they wouldn't last long because even though she used the tiniest set made, she still have to put them at an angle to get them in.  But it was worth it - we were amazed at the difference in Cate after that first surgery.  We hadn't noticed on a daily basis that she wasn't hearing until we started seeing how much more in tune she was to thing after the surgery.  She paid more attention to people, the TV, life in general.  Sure enough 8 or so months later they fell out and the ENT said we should wait and see what happens.  By the next appointment there was so much fluid in her ears that she was back to not hearing again.  So in April of 2008, we were back for our next set, which is when deja-vu starts because we were back in May 2009, May 2010, June 2011, a quick return in January 2012, then last week.  We visit the ENT every 3-6 six months and the minute we hear the tubes are out we test her hearing. 

The first time Cate has done the "big girl" hearing test - in the booth all by herself, identifying pictures and clapping for sounds!

If we see any decline, which so far has been every time, we push for new tubes.  Maybe that seems premature but I know one thing, my girl can't learn correctly if she can't hear even for a short time.  She may not get ear infections but experience shows that fluid gets trapped in those ear canals that are still using some small tubes and she starts hearing like she is under water.  Maybe when she is a young adult we'll be done with this but I am assuming we'll fight with ear tubes as long as she is a child.  I probably come off as very cavalier regarding ear tube surgery to the people who are around me at the time.  The truth is that I can't sleep well the night before and I can't eat the morning of the surgery.  I don't like sending my baby back to be put to sleep for any reason.  But Cate makes it bearable with her awesome attitude and every time it has gotten a little easier.  This time was a breeze - we got lucky with a 11:15 am appointment (important because she can't eat before) and she was fully occupied with the IPAD or her LeapPad from the time Ric dropped her at my office until they took us back to our room so she only asked for food once or twice and didn't fuss when I told her should couldn't.  She isn't scared of the hospital and knows it is a place where people help you.  She did ask a bunch of times about getting a blood test, because she did not want that.  Our children's hospital is fabulous - I know how lucky we are to have them so close.  This time they had a special gift for Cate that she had a very fun time testing out -

Sorry the picture is so blurry but the girl wouldn't stop twirling in her new tutu!  Before the dancing started, Cate and I played hospital with Daisy (her stuffed dog that was won selling girl scout cookies).  We talked about Daisy putting on the gown then getting a fun ride on the moving bed before the doctor in the white room would do "poof poof" (it is easy for us to relate the anesthesia mask to her nebulizer and inhaler spacer masks that she is very familiar with from a couple years ago), then after the doctor looked in her ear she'd be back in the room with me.  We are fortunate she is not scared by pretty much any of it, once we talk it out.  The days when she had to take an oral "goofy juice" prior to heading back were much harder since it took forever to get her awake and compliant enough to drink the juice required plus she was a very unhappy girl. 

 

Cate and Daisy are ready to go

When the anesthesiologist came to visit us, I told her about calling the mask "poof poof" and Cate asked if Daisy could go first - she said no problem on both accounts.  So a little while later off Cate went with Daisy, just smiling and looking around as she chatted up the nurse pushing the bed.  Fifteen minutes later the doctor stopped by to say all was well and yes there was a lot of fluid behind the ear where the tube had fallen out and the other tube was blocked by "debris" so she replaced both of them.  Ten more minutes and Cate rolled in saying "Mommy, Daisy went first but I did it, I was very brave".  Cate wasn't happy about the IV in her hand with the stabilization board on her arm but at least this time she understood if she drank the juice box then it would come out.  So she drank like a champ and as soon as it was gone started asking the nurse if she could "take this thing off".  Once that was done a couple of signatures later and we were packing up.  I left my office at 8:30am with a child who keep asking to turn everything up and returned home at 1:30pm with a happy child who hears great.  I'll take that round trip anytime - Thank you Children's, hope we don't see you again soon!

 

 

and a little side note to gather some sympathy for not posting last week - this is what my kitchen looked like 4 weeks after demo - see the refriderator that lives on the screen porch in the window?

Now that is not a current picture, a ton of progress was made in the last week so we are still on track for completion the beginning of next week but I'm starting to lose my mind since they took away  my washer/dryer and utility sink on Sunday - "i can do it - it will be so worth it, i can do it - it will be so worth it, i can do it - it will be so worth it" - maybe I can convince myself if I say it enough.



the dentist

My goal of getting at least one post a week up through the chaos that is summer vacation + a complete kitchen renovations (no kitchen for 6 weeks-ugh!) is much harder than I anticipated but I'll keep trying! 

Unfortunately I don't have any good pictures for this post but we had another good dentist appointment for Cate right before school ended.  So for all of you out there with kids who have Ds and HATE the dentist - it is possible for that to change.  One year ago I posted in Look Mom No Cavities about Cate's challenges with the dentist that resulted in her being sedated just to have a cleaning.   Well one year later, we have graduated again!  This visit was still a "special" dentist appointment (meaning she is scheduled with the dentist for the entire visit and they are prepared to do restraints or sedation if necessary) but the dentist was pulled away and Cate managed a whole cleaning with just the hygienist!  So at our next visit in 6 months, we are in a regular old slot with the hygienist and a normal fly-by from the dentist!!!  How exciting - I wouldn't have believed we'd ever get there two years ago.  Cate also let them do a panoramic x-ray which concluded what was already suspected - Cate is missing 3 adult teeth.  I know that sounds awful but in reality its not that bad.  Two of them are molars and with the crowding she already has, chances are we would have had to pull some teeth in that area anyways.  The other is a front side tooth so it will require some work to make her smile look better but since we are looking at orthodontics anyway, again it is not that big of a deal in the scheme of things.  The fact that she let them take the x-ray and stood still as requested by herself is HUGE plus she had no cavities!!!!  She is really growing up! 

a victory dance!

In the midst of the last week of school, a house fighting viruses and dealing with a big remodeling project - Cate is the perfect one to lighten any mood!
I promise the victory dance at the end is worth the 30 seconds of watching the ball roll!

 

Cate's 2013 Swim Meet

This post is going to look very similar to the post last year but I just can't help myself.  I am so proud of Cate!!! Last weekend she participated in her adaptive swim team's Spring Swim Meet in the 25 yard freestyle, 25 yard back crawl, and the freestyle relay.  While she didn't get any first place ribbons, she beat her times from last year by 20 seconds in the free and 3+ minutes in the back stroke.  She actually swam an entire 25 yard lap of back crawl without every stopping or turning over.  It was so much fun and everyone was so proud of her.  I'll say it again - it means even more that the baby I was scared wouldn't do "normal" things is an awesome swimmer!!! 
I love this girl so much I think my heart might just explode some days.

all warmed up and ready to go!

 

a wave to her many fans as her name is called

 

ready

go!!!!

a great finish!  She tried to beat that girl to the right but didn't quite get there.

ready for back crawl (which took over 4 minutes last year and she needed a little help)

no help needed this year - she's going strong

Lucy was so proud of her sister!

And Cate was so proud of herself which is the best part of it all!!!!

Heart Day - 7 Year Anniversary

I actually don't have much to say today on the 7th anniversary of the scariest day of my life that I didn't say in my very long post last year, except that I am more grateful every day that my girl has a healed heart that allows her to be the beautiful active child she is today.
I am grateful my girl can go on vacation without medical equipment and doctors notes.

 

 

I am grateful my girl can ride a bike.



I am grateful my girl can be curious.

 

 

I am grateful my girl can run though a sprinkler.

 

 

I am grateful my girl can be a cheerleader like her mommy was back in the day.

 

 

I am grateful my girl can swim to her hearts content.

 

 

I am grateful my girl can go on pony rides.

Most of all I am so grateful, I can't even put it in to words that the doctors and nurse at Children's Healthcare of Atlanta do the work they do.  I fully realize if Cate was born not so many years ago that she is not be the child she is today because no one could have fixed her heart or wanted to even try.  We are so blessed to have a healthy vibrant daughter like Cate and owe so much of it to those doctors and nurses who healed my baby and kept her safe during a scary surgery and recovery.  I am also grateful to all the therapist who helped her gain back her skills and strength.  There no thank yous big enough or words available to describe the depth of my feelings.  I get to mother this treasure and I know that I have God, prayers of friends, family and strangers, and medicine to thank for each kiss, hug and smile.  I appreciate each day as a gift given to me, I am a wonderfully lucky mom.

Happy Heart Day Cate

Spring Break

If I have any readers left, you deserve an explanation of my 5 week blog hiatus but really all I have are excuses so I'll just apologize if you were wondering about us and move on!  I can't really promise a much better performance in the coming weeks given the end of school and a major house related project starting.

Tomorrow I'll have more to say but today I'll let the pictures talk and say Happy Anniversary to my husband - that wonderful day 9 years ago was the beginning of this amazing life that I wouldn't trade for anything in the world.  And a week like our spring break vacation to the beach is a perfect example - we had a great trip and the girls had so much fun doing nothing more than going to the beach, swimming and being together.  I don't have a picture of my very favorite thing from that week, we took the girls down to the beach after dark to look at starts and play with flashlights.  But I did take my camera on a few adventures.

Our one venture out to a resturant outside our complex and a photo shoot on the dunes there.

Both girls did great riding their bikes to the beach everyday.

Walking to lunch at a favorite restaurant.

Can you tell they like this restaurant?

We had one day of rain but by the evening low tide it stopped so we made a foggy trip to find shells.

Cate getting her feet wet.

Awesome daddy got really wet going to the good shells!

Lucy decided digging for shells was preferable to getting wet.

fun in the fountains

I know I am a lucky mama to have such a wonderful family with the opportunity to have a great vacation.

How Down syndome affects Cate's riding a bike

You might be saying of course Cate should be able to ride a bike she is 7 or you might be saying wow can kids with Down syndrome ride bikes?  Those of course are the far ends of spectrum - those who never underestimate Cate or kids like her and those who always underestimate them consciously or unconsciously.  The facts are though that learning to ride a bike is not as simple a process for Cate as it is for Lucy.  In general learning to ride a bike could be hard for a child with Ds because of hypotonia (low muscle tone) and a related lack of coordination.  It might also be hard for a child with Ds to have the motivation to do the work if it is not something that interests them.  For us - Cate is athletic, strong, and active just like Lucy.  But the reality is that new major motor skills can be hard for her and motor planning is not always a natural process, it take practice.  She really never learned to crawl and she was 22 months old before learned to walk - even though in her own way she was totally mobile by this age.  It took Physical Therapy and practice to learn to walk for Cate, unlike Lucy who I swear stood up and walked 4 steps on the very first try without anyone ever showing her what to do.  So it is not a surprise that learning to ride a bike has been a bit of a process.  I got Cate a toddler bike at a friend's garage sale but after a couple tries when she was 4 or 5, but it was obvious she was just not ready.  She constantly pushed the pedals backwards making her stop which was really frustrating to her, plus she had no desire to do it.  We live on a big hill - there is no where in our neighborhood to really ride a bike, heck I'm not even sure how many actual kids she'd ever seen doing it really.  She just didn't care and with Cate that is the only successful place to start with something needing practice.  Last winter my parents found a bigger bike for Cate at a garage sale and dad added some training wheels for us so that summer we carried the bikes to the nearest cul-de-sac and started trying to teach both the girls.  It was a back breaking experience for Ric and I but Cate was definitely more interested.  She still have problems keeping a pedalling cycle going but at least she was cooperative.  After that we kind of let the practice slide because of lack of practice area and motivation on my part mostly.

I do want Cate to learn to ride a bike because any form of exercise she likes is a good thing and as she gets older it is a valid possibility for transportation.  So our upcoming beach trip offered all of us the motivation we needed to buckle down and practice.  The place we are staying has two adult bikes and is on the boardwalk to the beach.  A friend told me her kids rode to the beach everyday and I could immediately see how much easier that trip would be then walking back and forth multiple times a day.  So I started talking up the bike riding and then last week as soon as the weather turned nice, I piled both bikes into the car and headed to new park with plenty of good flat bike practice area.  At the time I was pretty sure I was crazy to head our on this venture to teach both girls basically from scratch by myself.  I was amazed at how well our first outing went.  The girls were both excited by the promise if they learned to ride all the way around the circle (a 1/4 mile walking track) that they could ride to the beach on vacation.  We donned all the pads and helmets then right off the bat Cate went a few feet with no help.  She was determined to get it so she practiced by herself while I helped Lucy learn for a while.  Within a half hour Lucy was off and running giving me some time to work with Cate.  Both girls had trouble getting started in certain pedal positions but overall they were moving in the right direction.  Cate's biggest problem is watching her feet instead of the road ahead.  So she that first day she had some falls because she overturns the front wheel to the left getting the wheel sideways and dumping her off.  But every time she cried for a minute, accepted a kiss, then said she wanted to try again.  By the end of that day she was going for decent distances.  Since then we've tried a couple more times and they just keep getting better.  On Friday we demo'd for daddy and I actually got a short video of Cate.

She is still a riding pretty slow but she is pretty darn steady and getting the hang of the motor planning and coordination required.  I think it will be a while before we take off the training wheels but I don't doubt someday we'll get there - this momma is just not in any hurry!!!