iPad inchstone update:

Even though we've always considered the iPad a primarily vision impaired/ CVI tool, we have worked hard to look for apps that address ALL of Rowans disabilities...and are beyond thrilled to note that she has recently and CONSISTANTLY begun to mimic the horses whinney on Animal HD!!! We could tell Lil' Row enjoyed the music, city sounds, sound effects, and animal sounds provided on the many apps we've downloaded on her iPad by the various behavioral responses we would get from her: smiling, rapid breathing, head turning, etc...but this new "inchstone" is undeniable proof that her iPad is a remarkable aid in Lil' Rows therapy!!! Not to mention a big ol' boost in mom's "hope department"!! :) Touch and Say by Interbots is our "Latest and Greatest" iPad addition...Row just loves it! And all moms out there should add the Eye Handbook...you'll not find THAT much info for FREE anywhere!!!!!

Lil' Row said "Moo" instead of "Boo"!

Lil' Row has had a pretty long few weeks since her surgery...but she is getting better every day! She even managed to "tough it out" on Halloween for a while! She's still not thrilled about being upright...especially in her wheelchair...we're hoping molded seating might help her out some in that department. But she made the cutest COW on the block, and the BIG MAC switch we set up for her to "MOO" with kept her distracted long enough to get mom a Snickers or two! :)

The Road to Recovery

Well we're back from Cincinatti Childrens Hospital with one unhappy, yet much improved Lil' Row! Dr. Sturm, Row's pediatric orthopedic surgeon was able to straighten her out more than any of us had dared to hope for! She does have some pretty major incisions...two running horizontally across the top of each buttock (one 6 inches and one 8 inches long), and one 9 inch vertical incision going from the base of her neck down the center of her back! Right now they look massive and painful but seem to be healing nicely...and she's young enough that the scars may fade in time...we hope! And her healthcare providers have all assured us that Row's lungs have never sounded clearer!!! YAY!!! Finally, after months of illness and isolation, Lil' Row's on the road to recovery! We know it's gonna be a long road...this had been very traumatic on her small self and we're just now beginning to discover that some of her "inchstones" have sufferd setbacks but we have no doubt Lil' Row will soon recover any skills she may have lost and then some! Time to work on sitting....update again soon!

End of Summer....

Well, this was not Lil' Row's best summer...it began with a 16 day stay in the hospital (9 of those in the PICU), followed by an additional 6 day stay, then an overnight visit, a homebound nurse coming in 2 times a week, and Rowan living in nearly total isolation!!!! She picked up Mycoplasma pneumonia in May which caught us totally by surprise and lead to respiratory failure, a ventilator, pseudomonas pneumonia, sepsis, and enemia! Her recovery has been slow due to the scoliosis which is now measured at 80 degrees! It's been a very difficult few months for Lil' Row and her family...and looks to get worse befor getting better! She is scheduled to undergo a VEPTR implant in early October which ofcourse is major surgery but also neccisary...without it her lungs will grow more and more compressed making this summers bout with pneumonias only the beginning!!! So please cross your fingers for Lil' Row and maybe whisper a prayer or two on her behalf and we'll update her blog as soon and as often as we can! Thanks

Fun In the Sun!!!!!!!!!

Lil' Row's very first beach trip was a total success! She was on her best behavior the entire time...including the car rides down and back! She slept great every night... for a week (which had been one of our primary concerns). She seemed to enjoy everything from swimming and playing in the sand to shopping and bowling...even tasting new foods IN RESTRAUNTS without so much as a whimper! And not once did she throw a fit or shut down! We have concluded it has to have been the "stress free" environment! She could sence that mom and dad were relaxed and so she was relaxed! So glad we decided to take the chance!!!

Lowtech Play...

Even though Row is an iPad baby now we still make time for some old school play!!!! This is a clip of her trying to grab toys in a bucket of popcorn at Milestones Therapy Clinic ( which we have nicknamed "INCHSTONES") Rowan did so well at this activity that we've made her one for home...two actually...one with popcorn and one with rice! Totally differant textures but both equally as interesting....these make great, inexpensive tactile/sensory tools!

iPad iNchstones...

"Inchstones"...I just adore this term! I've stolen it from a friend who borrowed it from another...I think the reson I like it so well is that for families of special needs children the term "Milestones"
often leads to discouragement and heartache! I believe inchstones best describes how our family...and I'm sure most families with children like Rowan cherish each and every accomplishment...no matter how big or small! This is a clip of one of Rowan's inchstones with the ipad. It shows deliberate and consistant interaction with one of her favorite applications "Look Baby"! Rowan works very hard in this clip and if you will watch closely, with your heart, you will see past her difficulties to the "inchstone" she has accomplished here!!!