27 February 2014

Early Learning Opportunities for Children

I just don't know how some families keep everything together and stay on top of all the duties that come part and parcel with raising a family.  One area that I've thought a lot about but not really done much with is in regards to preparing Matthew for preschool and Kindergarten (he's only 2 1/2, is it time to start doing this already?!?) and for that matter, getting Luke on board with early learning as well.  Aside from lots and lots of toddler play where we've encouraged Matthew to learn colors, new vocabulary words, memorizing 1-10, memorizing the ABC song and the like, I haven't been pushing him with iPad apps, flashcards, workbooks, reading sight words, etc.  I was inspired recently by a friend of mine to be more intentional with playtime and got organized this week with iPad apps.  Here is a list my friend compiled of her daughter's favorite apps as well as a longer listing of apps for various learning purposes.  I downloaded quite a few of these and then organized them into various categories on the iPad: ABC's, counting, reading, sign language, music, interactive books, games, etc.  And then after Matthew went to bed last night, I deleted YouTube from our iPad!  He's become obsessed with a channel called "Tuttitu", which is fortunately age appropriate as the majority of things on YouTube are not, however he cries and begs for it and gets upset when we turn it off and I'd prefer we use the iPad for learning over entertainment. 

Ellie's Favorite Apps

Additionally, last week I downloaded the BrillKids Little Reader program to our PC and then purchased their iAccess program to get it installed on our iPad.  We were quite fortunate to receive a Special Needs Scholarship from the Early Education for Every Child Foundation and have been using it with Matthew and Luke both over the course of the last week.  It's intuitive and fun and keeps both of their attention.  Matthew asks every night for his "reading game" and Luke is always on Matthew's heels as we're getting it loaded on the iPad.  Typically, Matthew does the interactive part with the touch screen and Luke sits next to him and watches for now.  Soon I hope to be doing separate lessons with each of them. 

Finally, the same friend who shared "Ellie's Favorite Apps" also shared a link to a website called K12Reader.com and particularly pointed me to their Dolch Word List Worksheets and Activities.  She mentioned that she started her daughter with the Dolch Word Lists - Flashcards (the 3rd bullet down on the page) and since I have a laminator, I plan to get these printed out and laminated this weekend so we can start with sight workd flashcards to support early reading too. 

What do you do to support early learning with your children? Please share in the comments below!

What sounds should my child be making?

Luke's speech therapist shared the following resources with me and I wanted to be sure to document them as important reference tools.  The first is a chart of when a *typical* child should be making specific sounds.  This is actually something I'm interested in for Matthew at this point... his speech is generally very developed, although I was inquiring to Luke's therapist about a concept she refers to as "fronting" as Matthew' doesn't accurately pronounce "k" and "g" sounds.  She suggested that fronting is very common and not something to be overly concerned with at 2.5years old.

Speech & Articulation Chart

Treatment Areas: Language, Speech and Hearing

23 February 2014

A Classic Beauty

A very dear friend of mine, Sherry Smith, will be making her debut as as the Associate Judge alongside Eric Topp at this year's International Brown Swiss Show at The World Dairy Expo in Madison, Wisconsin, the largest dairy show in the United States!  Sherry has been sought out in the past for other large shows and recently officiated the North American International Livestock Exposition's Brown Swiss Show in 2012.  It's undoubtedly a huge honor and I'm so incredibly excited for her to be executing her opinion at the highest level this fall!  In preparation for the press releases to go out, Sherry needed a headshot to send to the folks at WDE so we spent a little time yesterday morning taking photos.  Sherry is a classic beauty, inside and out and it was fun to spend time with her catching up!  I'll leave her headshot a secret for now... you'll have to keep an eye out for the press release to come out from WDE to see what she submitted! Here are a few images from our session.

22 February 2014

Pneumonia and an ear infection

Yesterday we took Luke to the pediatrician with a 104.4 fever.  He was in a pretty high level of distress... very limp with a constant moan being the only real sound he'd make.  Following an exam and another set of chest x-rays, it was determined that Luke had some pneumonia in a lobe within his right lung and also a right ear infection.  For treatment, he received a shot of Ceftriaxone (dosage was split in half with him receiving half of the dose in each of his thighs) and we started on oral ammoxicilin this morning. 

Nearly 24 hours later, he's visibly better... the fever is gone, he's more active and the moaning has stopped.  That said, he's still not himself... only wants to be held and cries when we put him down.  I feel so bad for him.  I just wish he'd get better and stay better, it's terrible seeing him sick all the time.

Please continue to pray for our family!

20 February 2014

"Home is where you make it" - Joe Dirt

A classic movie character, Joe Dirt, coined the phrase "Home is where you make it." For all of the quirkiness in that movie, it may seem a little boring to some that this is one quote that's always stuck with me.  Aside from what I'd consider his most obvious flaw, offering a very naive and blind trust to nearly everyone he meets, at the core of the Joe Dirt character is someone who is optimistic, accepting and willing to persevere.  Someone who is a chameleon in life... a person who has the ability to adjust to his circumstances based on the situation he's been placed in, all while maintaining a positive and friendly attitude towards those he meets.  He is at "home" regardless of the setting.

It feels good "to go home"  following a long journey and it's nice "to be home" when you want to relax in faded, stretchy-waisted yoga pants and a hole-y t-shirt with a 4H image (my choice tonight).  "Home is where the heart is" when your family is near and "Sweet home Alabama" evokes nostalgia about the state, even for a small town, Midwestern farm girl from Ohio who's never visited.  Home is where you're comfortable, can let your guard down and "be".  Home just feels good.

Today we visited what's become a second home for us over the last 18 months and a place that I have a vehement love / hate relationship with... The Cleveland Clinic.  When I think about the Clinic in perspective of home... it's the place where we welcomed an addition to our family, sweet baby Luke.  And it's the place where we celebrated our first moments as a family of four on Christmas Day 2012, in a private room, which was a special accommodation made for our family that day.  It's this huge maze of a place that we've visited so often that we no longer need a map to navigate, even when appointments span the entire length of the facility or for that matter, sometimes even different branches of the network.  It's where we have a favorite girl at the lab downtown who we ask for by name when getting blood drawn.  I have a favorite food in their cafeteria, if you can believe there's anything good enough in a cafeteria to be called a favorite.  It's a place where I routinely share hugs, today it was with hometown friends who were at the Clinic for some tests for their school-aged daughter and with the Director of the NICU where Luke spent the days following his birth.  I actually look forward to these chance meetings when we visit because they seem to happen nearly every time we're there with a nurse or a specialist or even on days like today, a friend from "home".

"Home" is a place where safety comes first and although I'm not a fan of the undoubted millions of germs floating around in the air in that particular environment, in some ways there can't be many places that could be considered much safer.  Surely thousands of specialists abound and there are medical records with test results galore... it can be a serious high for those seeking to execute intense brain power.  For someone like me who considers herself better safe than sorry and who is constantly seeking information and input, I find immense comfort in the "home" that I feel when I'm there.  Their pediatric emergency room is a beacon of safety when I observed our young son with a major congenital heart defect as tachypnic and discovered a high grade fever at 10 PM on a Sunday night.  There is comfort there in being attended to by nurses, nurse practitioners and doctors who care about the well being of our family.  I do however, hate the politics and associated business behind medicine and at this point in our journey, I have a serious dislike for the changes that are coming our way driven by ObamaCare.  I am not a fan of the 3 hour round-trip drive to and from downtown Cleveland, especially on days like today that began with us pulling out of the drive at 6:40 AM and not returning until 4 PM... it sure makes for a long day with little ones in tow, especially when the littlest has a test at 9 AM that he's not allowed to eat or drink before. 

Today I was especially disheartened while receiving the results of a recent sleep study which was ordered by our neurologist.  He shared that he believes that Luke has what he's termed "mild" obstructive sleep apnea.  I wasn't really surprised by the diagnosis, but I was discouraged to learn that while we were referred to him by our pediatrician and this doctor ordered the study (following an initial appointment and exam with him in Cleveland in December) that he isn't the one who will be treating the apnea... that responsibility falls on the shoulders of our ENT.  I've become pretty astute over the last year or so to the fact that asking the right questions is vital in this game of health and wellness that we play on Luke's behalf and I think I usually do a pretty good job of navigating this world for our family.... today I was thrown for a loop and was left irritated that I had to follow up with someone to learn that I needed to schedule with someone else to treat the issue.  Couldn't he have just called me to say, "Hey, I have this full narrative report that I'd like to send you, it goes into detail about my diagnosis of mild obstructive sleep apnea... I'd be happy to answer any questions you may have, but before you make a 3 hour trip here and back home, I'd like to refer you to ENT for treatment."  Wouldn't that have been easier for all involved?  (The only problem for the business of medicine is that a phone call is free and surely today's visit will earn the Clinc a few hundred extra dollars)  Yes, I was already at the Clinic for a Swallow Study that morning for Luke and an appointment for me this time too, but those were over at 11:30 AM... I could have been home by 1 PM... three hours sooner and less time around hospital germs!!!  It's a tangled web we weave and today I was left particularly frustrated by the inefficiencies presented, especially as our ENT is in a different network, Nationwide Children's Hospital in Columbus (which is an hour and a half the opposite way of Cleveland from my home).  If I'd known that the ENT would be treating the diagnosis, I would have just started with him to begin with... he may have specific preferences for the sleep study that we didn't comply with this time around and quite honestly I won't be surprised if he asks us to complete another sleep study with his techs in Columbus.

In general, the comfort that comes from vetting potential issues through medical science is worthwhile, and at times even life-saving, but today I felt slighted.  The responsibility that comes with the role of being a parent can be heavy stuff at times and lately I've felt pretty worn out... It takes a lot of energy to manage our family, learn the world of special needs and our particular medical complexities all while being a working mother of two children. 

It's hard to explain, but I feel a lot of "build up" for days like today... we had tests or appointments at 8:30, 8:45, 9:00, 10:45 and 12:55 in Cleveland.  Since personal assistants are expensive and can be hard to come by, I do our scheduling and running around so that meant having the appointments on a day that I could be off work and working with three different doctor's offices to get them all visits scheduled back to back to back, but with enough time in between to have a meaningful visit and still get across campus to the next appointment with time to spare.  We had to leave this morning in time to get to the first appointment while taking into consideration rush hour traffic getting into Cleveland.  I didn't have a sitter for Matthew today so he came along and I was fortunate that my brother was free to come along today to help.  We had to pack to be away for a whole day... double stroller (which doesn't fit in my car, so we had to take the truck, which meant switching vehicles with Dustin this morning), milk for two for the whole day, snacks, baby food, diapers, activities for Matthew while we were otherwise consumed with doctor stuff for me and Luke - iPad, books, etc.  Matthew's potty training so we had to have extra clothes in case of accidents (We didn't have any by the way!! Way to go Matthew!!).  Being up and ready and having two kids ready and on the road by 6:40 AM is no small feat either.  Then there are the repercussions of the kids not getting morning naps and my obsession with germs as we are now leading up to an Open Heart Surgery date for Luke so I'm always washing hands, Purell-ing, etc.  Basically, that's a lot of background just to say there is a lot of preparation that goes into days like today so when I get something that sounds like, "Sorry, you'll need to pass this on to someone else to deal with the treatment",  it's easy for discouragement to set in... which many times leads to utter mental deflation and exhaustion for me. 

One foot in front of the other, one day at a time... If Joe Dirt is right and home is really where you make it, we'll continue to adapt, adjust and to settle in to making the best of our circumstances!  Fortunately, I've learned something really important about myself over the years and it's this... if I'm willing to reflect on my experiences with an open mind... there is an extreme resiliency at the core of my being and I will bounce back.  It's really comforting to think that by the time I wake up tomorrow the morning, I'll probably have taken a lesson learned, moved on and will be better because of today's experience, as annoying as it was in the moment! 

In the words of a dear and motivatingly powerful friend, Russell Gammon, "Onward and upward!"

13 February 2014

Happy Valentines Day!

I keep seeing all these hearts everywhere.  I know they are meant to represent love and romance, but all they've made me think about this year is Luke's "broken" heart which is represented via his atrioventricular canal defect.  Matthew received a vintage Fisher Price doctor's set as a gift a few weeks ago from a friend of my mom's and he's been obsessed with it ever since.  Admittedly, we go to the doctor's office relatively often which exposes him to observing these tools in use so it's no wonder from the first second he owned his own set of instruments, he was pretending to play doctor on all of us.  One of the first things he did was pull out his stethoscope and "listen" to Luke's heart.  It nearly made me cry.  Weeks have passed since that day and my own heart nearly skips a beat when I watch them playing this game together.

When Matthew isn't pretending to be his favorite pediatrician or his brother's cardiologist, he's typically farming... that is if you count carpet farming as a form of the occupation.  He plants his crops, harvests them and loves to drive hopper wagons full of his freshly harvested corn to his dairy barn to feed the cows... Jerseys of course! 

12 February 2014

Sleep Apnea and Down Syndrome

Last evening, Luke had a full sleep study at Cleveland Clinic's Sleep Disorders Center.  From the perspective of the Momma... not what I would call a fun night.  Luke had a number of electrodes attached with conductive paste and gauze, maybe 15 or 20 of them on his head, face, neck, chest, back and legs.  He had a pulse ox attached to a toe and two respiration belts, one across the chest and another above his hips.  Additionally, he had a breathing sensor taped above his lip below the nostrils to track each of his breaths.  The whole night was pretty miserable.  Being attached to so many sensors with wires and tape everywhere left lots of little things to be easily pulled off and made rolling or shifting during the night nearly impossible.  Additionally, there was a little hub that everything had to be plugged into that had to sit near his head during the night so every time he even turned his head, crying usually ensued which resulted in me getting up to console him and untangle him from the wires (some of which typically came off without me knowing)... once I'd get him back to sleep, the tech would usually re-emerge to reattach any of the wires that had come unattached, which would typically tickle, cause a twitch or maybe even hurt for a moment, so we'd be up crying again....

The pre-recorded webinar below was shared with me by another mom of a young son with Down syndrome who also recently completed a sleep study.  It does a good job of explaining sleep apnea and what causes it, the common procedure for testing and ends with pros and cons of various treatment methods.  This is a great resource because it is talks about apnea in general, but offers perspective specific to Down syndrome, which is always in line with the kind of information I'm seeking out.

The Developmental Medicine Center at Boston Children's Hospital Obstructive Sleep Apnea

  • Some highlights of the webinar that seemed pertinent to our situation with Luke:
    • Obstructive Sleep Apnea can become worse when under anestesia because already floppy muscles become more relaxed with medication.  This will be important to share with medical team prior to open heart surgery supposing Luke is diagnosed with OSA.
    • Thyroid Issues, specially the diagnosis of hyporthroidism is much more common in folks with DS.  Something I was already aware of, but I I didn't know that often OSA can be a  primary symptom of hypothroidism and it can be improved with treating the OSA.  Previously I'd thought that the thyroid panel was the only way to get at a diagnosis.  It's relevant to share that we just had a complete thyroid panel ran on Luke a few days ago and his Free T4 was 1.3, TSH was 6.030 and T3 was 180.
    • Specific to DS and OSA... often times this combination results in behavorial, cognitive and developmenal impairment which in turn can create a negative impact in the future related to integration in mainstream schooling and social frameworks

Something that I'd like to look into more in the future if we get a diagnosis of OSA is the relationship between OSA and thyroid levels.  I've heard that even when TSH is in normal range, T3 is high and the Free T4 is low, medication could help treat central apnea. 

PS - I'm in love with all of these other Down syndrome focused webinars from Boston Children's Hospital! They are such an awesome resource for families like ours!!
Allen Crocker Speaker Series

11 February 2014

Waiting to be discharged

Admitted to Fairview's General Peds Floor

Luke was admitted to Cleveland Clinic's Fairview Hospital at about 1 AM last night for a 103.4 temp and fast / labored breathing (his respirations at home were ranging from 77 to 84 and have consistently been in the 70's since we've been here). He tested negative for RSV but they are calling his virus bronchiolitis following the results of a chest xray. His white blood cell count was also elevated so with the temp there was a concern for infection, which resulted in him being put on an antibiotic drip with his IV fluid. With his heart issues it sounds like we won't be getting out of here till his breathing has returned to normal. Last night was Luke's 15th overnight hospital admittance since he was born 13.5 months ago.

08 February 2014

05 February 2014

Note to self

Buy this later to help Luke with OT and developing cognitive skills: Super Sorting Pie

Also, check out other toys from Learning Resources for Luke sometime soon!

04 February 2014

Momma Time

My interest in photography has been rejuvenated over the last few days... it's something that I've set aside for the last few weeks because we've just been too busy for me to have any time to myself.  I need an outlet and a place to unwind with quiet thoughts.  

Tonight, I've stolen myself away from the hustle and bustle of the busy upstairs where Dustin's giving the boys their baths and I've been working on practicing some editing techniques I learned over the weekend.  The photo below is one that I took during a Christmas celebration.  It's one that I passed over the last time that I worked on photos, but tonight it just spoke to me so I pulled it into the editor and started working on it.  

I just love the way that this child reaches me.  Those eyes and that intense, trusting gaze.  He's truly a special gift that we've been sent from above!

02 February 2014

Looking Forward to Spring

Even though the groundhog saw his shadow this morning.... we're still looking forward to spring.  And nothing says spring better than getting your seed corn in the ground!

Superbowl Weekend

I don't really do football.  Unless one of my kids plays football someday, it's likely that I'll never do football.  Even so, I still took some photos of the kids over the weekend and yes, I incorporated a football!  It's Superbowl weekend after all... gotta get in the spirit... can someone tell me who's playing again?

Matthew wouldn't sit still long enough to get a photo with the football, so here he is being his silly little self!  Just love him!