Saturday, April 7, 2012

New Weekend Play Group

I was flattered to have been asked by our local Ds association if I would help run a new weekend play group with another mom, targeting kiddos from infants to preschool age.  As if I didn't already have enough going on, I graciously accepted.  We have had one play date and the next will be next weekend.  We are scheduled for the second Saturday of every month, and we plan to rotate locations.  Every 3-4 months we plan to have our play group at this awesome church that has allowed us to use their play room and playground at NO CHARGE!  Thank you Advent Evangelical Lutheran Church in UA!  We are also doing some destination play dates like Firefly cafe, Emerald Fields Park, and many more.  I've included a few pics from last month's, enjoy!

Ella showing dad how to ride a bike!

there was even a puppet show...

Hopefully Macy will have a better time next weekend!

Sunday, March 11, 2012

Life is Good

I know, I know, I've not posted in quite some time.  Well, I'd love to make a million excuses, like...we put our house on the market, had a baby, bought a new house, sold our old house, moved, put Ella in a new daycare and started Ella in all new therapies in our new county...but I won't give you all those excuses...I'll just say that we're going to start fresh, with no apologies for the long delay!  Thanks for understanding :)

Ella is doing amazing.  She has become more and more mobile without actually walking, and yes, that is possible.  She crawls faster than most of us walk, and cruises around EVERYTHING!  She is starting to "let go" a little while standing, which is a huge deal.  Essentially the problem with walking is, there's no incentive to do it.  It doesn't accomplish anything more than crawling does, so often therapists see a long time span between crawling and walking in kiddos with low muscle tone. 
Health wise, she is on the mend.  She has had a sick winter with her share of viruses and she even shared them with the rest of the family, thanks El.  It is great to see her feeling (and looking) better after two rounds of antibiotics.  We added a new doctor to the list, an Endocrinologist.  Ella's blood work is checked regularly for abnormal thyroid and leukemia.  Our last test, December of 2011, she had an abnormal thyroid level (TSH), the leukemia screen was fine.  An abnormal thyroid in children with Ds is almost expected, at least at some point in their life.  It's no big deal, very treatable with medication and regular monitoring.  Our endocrinologist requested more blood be drawn so she could look for antibodies in addition to the (slight) abnormal TSH levels.  If she has the antibodies, we will be starting medication, if she does not, we will just monitor the condition and start her on meds when/if it becomes more severe.  We will find out this week.
I think she is warming up to her baby sister Macy, born September 6th, 2011.  At first she wasn't sure.."who is this person that takes all my mommy's time?", "why is she always crying?", "why is she always eating?"  Ella loves all of Macy's things, her swing, her bouncy seat, her exersaucer - they are like new toys to her.  The problem is, Ella is still so small she can still fit it all of them!  She LOVES to crawl up into the swing (this sounds like a good idea, right?) - at least she doesn't do it with Macy in it too!  Macy is doing well, sleeping through the night (finally) and doesn't miss a meal.  It is so weird to have a child that grows so quickly (probably just a normal rate, but I'm not used to it).  Macy is already probably 16 pounds, and Ella is still trying to tip the scales at 25 pounds!  Even though they were born around the same time of year, I don't think Macy will be able to wear lots of Ella's summer clothes, as she is already bigger now than Ella was her second summer.

My goal is to try to post weekly, but bear with me until I get into a routine!  Of course I'll do pictures too, but not today...there is baby food to make and laundry to fold, so need to move on to the next thing!


Saturday, August 13, 2011

Summer 2011

Wow, suddenly, it's August, just like that!  We've been enjoying our summer together, our last one as a family of three!  We took Ella on her first long car trip and beach vacation - we went to Ocracoke, North Carolina.  She did fantastic in the car for all those hours, better than her pregnant mother!  Ella loved the water and sand, she would get so excited when the waves came to shore - it was truly worth the trip just to see her expression when water would wash up over her toes and legs!

Ella has been making great strides with her gross motor skills.  She has finally decided she can crawl in four point, she just doesn't necessarily prefer it (still likes her belly best).  She is pulling to stand and will crawl up and over you like you were a jungle jim if you are sitting on the floor with her.  It still brings a smile to my face to see her on her feet, and she's been doing it for two months.  Walking in to get her in the morning or after nap and finding her standing in her crib will never get old!  We are going to PT once a week now since she is doing so much more.  At PT she walks on a special treadmill (yep, walks) and watches her video.  Sometimes we have to bribe her with food to keep her walking so she'll get to her goal of 10 continuous minutes (we usually do 2, 10 minute sessions on the treadmill) - but teddy grahams make everything better!

We have been otherwise busy preparing for baby number 2.  Grahm has the room painted, crib together, and closet I just need to get busy.  In the next few weeks I will be pulling out all those bins of newborn and 0-3 month clothes that we haven't seen in so long and at the time never thought we'd retire!  We are taking a child birthing class, since we missed that the first time around.  Learning all sorts of meditation, relaxation and breathing techniques we may not even Jones #2 is breech...if she doesn't turn soon, we will have another c-section!   I think it's safe to say we have another stubborn girl on our hands!  Due date is September 14, and scheduled c-section is September 20th; but if she stays breech, we may move up the c-section, we'll have to wait and see.  Turn, baby turn!

Thursday, May 26, 2011

ECLC Spring Activities

In April, Ella's school went swimming.  Ella LOVES the water in general (bath time, etc), so I thought this would be a big hit...
Since she loves to splish and splash and I knew she'd be in the arms of one of her teachers, I opted to tag along but not get in the water; assuming she would be just fine without me.  As most of you know, Ella has been known to be a sympathy crier from time to time.  In the locker room while getting the kids changed into swim diapers and suits, about half the kids started to fuss and cry.  Maybe it was the new surroundings, the echo of the locker room, etc; who knows, but all I know is Ella did her best to keep her composure...and then lost it.  The bottom lip started to quiver, and then the flood gates opened.  And they never closed until 5 minutes before we were due to leave!  We walked out of the locker room and into the pool area, at this point Ella is cutting off circulation in my neck with her arms wrapped so tightly.  We tried to play beside the pool with some water toys, sing some songs, but it seemed there was no calming her down.  Since she was in her suit, I decided to hand her off to one of her teachers in the water, thinking maybe the water would distract her from the others crying and she'd start to enjoy, not so much!  I felt helpless on the sidelines in my jeans and t-shirt, wishing I had at least tried to squeeze into my swimsuit!

Ella finally starting to calm down.  She had cried so much she was exhausted and nearly fell asleep in Kelly's arms.

Ella started to enjoy herself  five minutes before we had to leave!

 So, the following week, I went out and bought myself a maternity bathing suit and went swimming with the class.  We had a blast.  Ella was having so much fun splashing and kicking, I was literally drenched!  And fortunately, there weren't as many crying kids this time around, which I'm sure helped!

Ella and mom

Each week at ECLC, they have art class.  Ella has absolutely no sensory issues and typically comes home covered in paint, clay, flour; whatever happens to be the medium of choice that week.  Throughout the year, some of the "best" art work for each child is collected and given to the parents.  A few select pieces are chosen to hang at the annual ECLC art show for parents and general public to enjoy.  The art show also hosts a silent auction to raise money for the school.  We bid on and got two small canvas paintings that were created by Ella and her two fellow classmates, Natalie and Erin.  The families go on a "hunt" around the school to locate the two pieces from their child, as all the art work is hanging proudly in the halls of the school, and both pieces are not hanging together.  Ella is quite the artist, but she is still perfecting her touch, so fortunately they had a small picture of each child and their name beside the piece of art for easier identification :)

Ella, mom and dad at ECLC art show

Ella, mom and squinty dad at ECLC art show (sorry, best pic we got!)

Friday, April 22, 2011

(the dreaded) Sleep Study

I know I've been promising a post about the sleep study, but wanted to wait until we had results back and knew what our next step was before posting.  So, here goes...

Ella's "start time" was 7pm, so we arrived promptly and checked in, only to be told our sleep study technician was at the Westerville location and to please wait in the waiting area until his return.  Germy waiting rooms are my favorite, especially at a Children's hospital.  Fortunately, we brought the stroller, so we just kept Ella strapped in until he arrived.

The torturous process of gluing 15 probes to her scalp began about 7:30pm, and took nearly an hour.  This involved initially drawing lines on her head with a wax pencil into the different quadrants that the probes were to then be attached, to act as a map once the application process started.  The multi-step process for each probe involved: cleaning the scalp area with alcohol, applying a gel-like glue, setting the probe and applying pressure to get it to stick, covering the probe with a small piece of gauze drenched in yet another glue, and finally drying both adhesives with a small hair dryer of sorts.  Sounds fun, right?  And this was just what was attached to her scalp; she also had two electrodes on her chest, two electrodes on her legs, a snore pad sensor under her nose, a cannula in her nose, a CO2 detection tube in her mouth, and the familiar O2 sensor (ie "glow toe") attached to her toe.  Oh, and I forgot the respiration bands around her chest and abdomen (purple belt-like things in some of the photos) and last but not least, the arm restraints to keep her from detaching any of the above.  Needless to say, it took both Grahm and I, as well as the technician at times, to keep her restrained in order to get all of this on properly.  It was extremely difficult to keep restraining her when she was screaming and crying so much, but I just kept telling myself nothing they are doing is actually causing her pain and if we don't get all this crap on correctly, we'll be here doing this again - which is of course not what I wanted. 

Ella just after getting all hooked up.  Homemade arm restraints that they called "welcome bands", as she was quick to tear out one of the probes just after we got everything on and in an effort to keep her from doing it again...

Close up of all the probes, tubes, attachments, etc.  Ella had cried so much and so hard, her eyes were swelled :(   I know she's giving us that look like she'll never forgive us, but she's so quick to forgive! (hence the next picture)

Fake smiles by mom and Ella...

They tape all the wires together in the back so she's less likely to get tangled in them during the night.  How thoughtful of them!

Dad and Ella in the morning, after what I'm sure was a very restful night for both!

Calming her down really just took some TLC from mom and dad, a good squeeze on Mr. Rabbit, and a nice bottle of milk.  Ella was asleep by about 9:15pm, and was so exhausted she slept the whole night through.  Grahm spent the night, and I went back in the morning to retrieve them.  We were told by the technician that it was a "successful" study, in that they got all the info they needed and the study would not have to be repeated.

Ella's study came back with an index of 4, and anything greater than 2 is considered abnormal.  The index is calculated by the length of time slept and number of "episodes".  She was diagnosed (by the sleep study doctor) as having mild obstructive sleep apnea.  Ella's pulminologist from when she was in the hospital (who originally ordered the test as part of our bargain to get discharged) told me they would at this point defer to her ENT, but that likely she would need to have her tonsils and adenoids removed.  Hmm.  I thought we had ruled out obstructive apnea when she was in the hospital by doing the scope and xray?  After meeting with Ella's ENT, he explained that the scope and xray would only detect obvious obstructions (like a growth or abnormally large tonsils), but that you can still have obstructive apnea once you fall asleep and the soft tissue in your neck area relaxes and gives in to gravity, and your respiration's become shallower (normal during sleep).  He said that her study was very mildly abnormal, and would have been considered normal 5 years ago, but that standards have changed, etc.  He wants to only remove her adenoids, as that is a much less involved surgery for someone her age.  Apparently, a tonsillectomy at this age usually results in a re-admittance for dehydration, as their little throats get so sore they won't drink or eat and they subsequently get dehydrated.  Adenoid removal only should be out-patient, and we should hopefully be home by the afternoon, same day.  Surgery is scheduled for June 16th.  We figured since she was going to be under anesthesia, we would go ahead and have the tear duct procedure done too, why not?  So, the coordination of two surgeons and a busy operating room resulted in us waiting until mid June, but it will be here before we know it!  After a quick search on Wikipedia, I learned that adenoids aid our immune systems, but only until age 3, after which our immune systems have a more efficient ways of fighting off viruses and bacteria.

So, the results of the study are not exactly as I had hoped (of course I wanted them to be normal and for this ordeal to be over), but at least it is not central sleep apnea that would likely require O2 every night for sleep.  We gladly called to have the O2 saturation monitor (that's been residing in her bedroom since her discharge in January) removed for good.  No more glow toe!

A side note, the picture at the top of this blog is a year old this week!  I guess maybe I should work on something a little more recent...or maybe my photographer husband should!

Tuesday, April 19, 2011

Columbus Parent Magazine

I know we mentioned to several about the interview we did with Anietra Hamper for the April issue of Columbus Parent magazine, so I wanted to give the link to the article for all of you to read now that it is out in print and online:

Sleep study post soon to follow...

Sunday, April 10, 2011

Simple Pleasures

Well, where has another month gone?!  It's my favorite time of year, and like always, it's going by so fast.  We've been keeping busy with our many appointments, and life in general.  We have had the sleep study, glad to say that is over and done with; but I'm going to wait and post more detail and pictures once we have results back (should be this coming week).  So, I just wanted to get a few recent pics up for all of you to enjoy!

A bit on milestones.  I think, for the most part, the average person thinks of milestones for children to mean things like crawling, pulling to stand, standing, walking, etc.  Don't get me wrong, those are certainly milestones, but there are many, many more small ones in between that don't get celebrated or recognized...unless you have a child that struggles to achieve them.  In the world of physical therapy for a child with low muscle tone, there are so many steps in between all of those milestones I listed above.   Ella had missed physical therapy for a month, so when her PT saw her again after a month, she was so impressed at what she was doing.  She still army crawls like a pro, I swear faster than we walk, sometimes.  She's very curious, wants to know what's going on, and certainly doesn't want to miss anything.  She is getting really good at "pulling up", and this is a great strengthening exercise for her.  I don't mean that she is pulling to stand, but the little step before that, in which little ones pull their upper bodies up and over things, like pillows and even someones legs (like mom and dad's).  For Ella, it's ALL about motivation.  If you put the right motivator (ie: food or favorite toy or something she's not supposed to have, like the TV remote) on the other side of your legs, she'll generally pull herself over you to get to it.  That leads me to post these next few pictures.  I think to the average parent, once your kiddo is tearing apart your kitchen cupboards, your thinking of child proofing and doing what you can to keep them out of there - because all they are doing is making another mess for you to clean up.  Well, I'm ecstatic to say, "Ella is in the tupperware cabinet!", and I'll clean up her mess a thousand times, I don't care.  To us, it's just such an accomplishment, a "milestone", if you will.  Firstly, to have the gross motor ability to get there, then sit up, then open the cabinet and take out all it's contents; and secondly, to cognitively have the interest and curiosity.  So, even though I don't own a single piece of tupperware (doesn't everyone still call it tupperware, even though it's not?!), I'm more than happy to keep this cabinet well stocked, without a safety lock, for her to rip apart as many times a day as she pleases.  Not to worry, we will be adding safety locks to the other cabinets that we don't want her to get in to; but thankfully we have an old clintonville home with sticky cabinets that are really hard to get open!

The red bowls seem to be a favorite!

Ella has taken to sitting at the front door, watching the world go by.  Grahm says she's longing for her own you think that's Ella's wish or daddys?!

We got out and enjoyed one of those nice weekend days we had a few weeks back.  Ella has been going to Highbanks since she was in utero, but we've never tried her in one of the baby swings.  Quite honestly, I had always been afraid she wouldn't have the upper body strength to keep herself upright with the momentum, but she's gotten pretty strong in the last few months; and she did just fine.  She absolutely loved it, laughing out loud and telling us "more" with just the octave of her laugh!

That is all for now, more posts to come soon, promise!