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 herself...no, 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!)

(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!

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:

http://www.columbusparent.com/live/content/issue/stories/2011/04/hot-special-marriages.html

Sleep study post soon to follow...

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 puppy...do 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!

Ella goes to COSI!

Ella gets to do some really fun, cool things at school.  It usually involves big messes, like finger painting or self feeding that is evidenced by her clothes when we pick her up.  Sometimes though, they take a field trip, and recently the whole class went to COSI!  This was a Wednesday, Grahm's day, so dad went along as well.  I know Grahm put an album on facebook, but I have to include a few of my favorite pics here!

(Note the wardrobe change!)

We finally got the sleep study scheduled for Saturday, April 2nd - so one of us gets to have a really rockin Saturday night!  I was disappointed that they couldn't get her in before then, I called at the end of Feb and they were scheduling 6 weeks out.  They asked if we wanted to be on a cancellation list, and I said "Yes!"  So far, we have gotten two calls to come last minute, literally an hour before she would need to be there!  I realize cancellations happen most times day of, but an hour out?!  Seriously.  Think about this people.  I have an 18 month old that will need dinner, overnight bags packed for both toddler and residing parent, and a 20 minute drive.  Needless to say we haven't jumped on a cancellation yet.  I'll let you know if that changes.  Thanks for reading and feel free to comment, love to hear from all of you!

Long Overdue Post

Thank you to those of you that follow this blog faithfully, and gently remind me that I haven't posted in a while...the reminders worked, so here I am finally getting an opportunity to download new pictures and write a new post!

The last few weeks since Ella has been home from the hospital have been fairly uneventful, and this is a good thing.  Ella's appetite has returned with a vengeance, eating and drinking what seems like way too much to stuff into this little girl!  Loss of appetite was expected with RSV, but fortunately Ella didn't lose weight.  At her 18 month check up (which was postponed since she spent her 18 month birthday in the PICU), she weighed in at 18 pounds, 14.5 ounces; and measured 28.25 inches long.  The next well visit would typically be at 24 months, but Ella's pediatrician would like to see her at 21 months, just to check in on her weight.

I wish I had more to report in regards to her follow up with Pulmonology, but I've literally been playing phone tag with the doctor all week.  I did get a message saying her data looked good enough for her to come off the oxygen at night, but that she still sees a little "something" and would like to do a sleep study within the next month.  I'm trying to clarify the "something" :) and will let you know what that means as soon as I know.

Ella is making great strides on a gross motor level.  She is still doing her army crawl thing, but she has become extremely proficient at it, and moves at top speed.  If I'm in the kitchen making dinner, she'll come check out what I'm doing; if I'm in the bathroom getting ready, she comes in to keep me company.  She is "playing" with the all fours position, getting into it, rocking, but when she gets motivated to move, she's back down onto her belly and away she goes.  She loves to watch the snow, so she'll go from the front door to the back slider doors, watching out the windows.  Sometimes when I pick her up her shirt is dusty and I realize just how dirty my floors are.  Grahm wants to tie a swiffer cloth to her chest and turn her loose!

We haven't snapped too many pictures lately, but below are a few from the past few days.  Enjoy and thanks for reading!

Ella and her new Magna Doodle



My gma Cheryl made me my very own batch of Valentine cookies, cutout hearts with pink frosting - YUM!!




Grahm participated in the Polar Plunge in support of Special Olympics Ohio, hosted this year by the Columbus zoo.  Brrr! 



Home Sweet Home

I can't believe it is Thursday and I am just getting to this post.  Ella was discharged from the hospital Sunday around 3:30pm, and I don't feel like we've stopped since.  Once we got her home, we had to call to have the Oxygen delivered and get our "operators license", then a quick grocery run for milk, and Monday morning I went back to work.  But let me back up and tell you how our last few days at the hospital went and where we go from here.
On Friday, we saw an ENT who performed a scope to look for airway blockages that would cause obstructive sleep apnea and hence lower O2 levels during sleep.  This test was normal.  Next, we had an x-ray to check for extra soft tissue in the neck/throat area that could "relax" while Ella is asleep and also cause obstructive sleep apnea.  This too was normal, although we really appreciated the excursion to radiology :)  So, ENT and pulminology agreed to just watch her and see how she did Friday night.  She slept really well (it's amazing how much better you sleep without someone coming in to do vitals every 4 hours), and only went below levels once.  The next day, the doctors came by, happy to hear this news and decided we needed to stay one more night so they could hook up something to her saturation monitor that would give them a continuous feed of readings.  Apparently the monitor normally just takes periodic reads rather than continuous monitoring.  Ella didn't have as great of a night, but even when she went below levels, she only dropped to 86, much better than previous nights of dropping to 82 or 83.  Finally, the doc reviewed the readings on Sunday morning and determined she fell within a range that would allow her to go home, but only with Oxygen during sleep.  Whatever, I'll take it, just get us outta here!
So, the plan is to have her on Oxygen up to 4 weeks at home.  This is the length of time the expect the virus to fully run it's course and for her to be completely healthy again.  At which point we will do a sleep study.  There still has to be a reason her stats drop during sleep and it could be one of two things.  Either it's the virus still present in her lungs, weighing her lungs down when she sleeps and dropping her levels, or she has central sleep apnea.  I vote for the first reason, but we'll just have to wait and see.
Oxygen at home has not been without incident.  Ella is still very sensitive to being held down and having anything done with her body.  This makes putting on the saturation monitor sensor (it attaches to her big toe) and the cannula a real treat each night.  She sets off the alarm on average 2 times a night.  It is almost always though because she has pulled the cannula out of her nose, or ground her toes into the mattress enough to mess up the sensor.  Either way, Grahm and I are both bolting up out of bed at the sound of this horrendous alarm only to find our daughter sleeping peacefully right through it, thank God.  The weather isn't helping.  The night before last with the strong winds, our power flickered 4 times and each time it tripped her monitor, as the Oxygen machine needs electric to run.  I almost wished the power would just go off for good, so at least we could hook her up to the tank that doesn't need electric and we can all get a good night's sleep.
We are so appreciative of our friends and family, and a big thanks to all of you that prayed, visited, called, emailed, texted, etc and kept us in your thoughts.  We were constantly feeling good vibes, and it truly kept us going.  I have included a few pictures from the last day or so at the hospital.

Susie

Ella, free and clear of facial band aids and nasal cannula.  Now if they could just get those discharge papers completed...

I had to include this one cuz I love the baby budda!  Thanks for the gifts Meg and Jen, the tissue paper was just as popular though as the book and cell phone :)

Not our best family portrait, but a happy day it was!

almost out the door!

Grahm's parting thoughts on the piece of equipment that kept us in this place for nine nights, the O2 saturation monitor.