A Year of Unexpecteds

Can't...Won't...Unsure...We'll Just Have to Wait and See...all terms that hit our family head-on this past year came to a screeching halt once they realized a key trait of our family:  stubbornness.  

From the start Andy displayed this character trait even before he was born.  During each ultrasound, Andy remained breech (probably laughing at us) - not allowing doctors to view his back.   Today as I look back, I view this reoccurring behavior as a mischievous grin at failure to comply with norm or authority. 

After birth, Andy's smile and laugh became contagious.   Doctors watched in amazement as he began to sit up, move his legs, suck on his toes, refuse to roll over (even though he could), and even crawl.   None of these acts were expected, and many of them took a while to accomplish, but boy did he blossom.  

Andy's eagerness to join the "body slam" events in the living room have encouraged him to climb mini-mountains (couch cushions, stairs, and the occasional body that is in the way), scale the hearth by the fireplace (after stopping to grind his teeth on the cement), and master the art of turning on & off alligator tears to seek what he desires.  

Andy's family contributions have been inundated by doctor visits.   Some received negative comments, others merely nodded at his progress, and a few gave us positive reassurance (we like those doctors).   Andy's positive attitude, ever-contagious smile, and daily dose of family "love" pushed him further.  

Robby has become a self-diagnosed PT this year.  First, he convinced Andy to roll over by simply hurling him onto his back or stomach.   Later, he completed joint compressions (yes, he even says those words) on Andy's legs, & encouraged him to crawl by stealing away Andy's toys.   The everyday bumps and bruises have ensure Andy a childhood as close to "normal" as possible.  

I, too, have grown this year when the unexpecteds came up.   I never thought I would know as many different pediatric specialists as I do now.   How the human body works takes on a whole new meaning.   I didn't think I would really celebrate when my baby pooped, cheer him on to "eat" (now that is an unheard of in our family), and seal my lips when he crawls away while changing a diaper (even though you want to yell - lay still, I can't bring myself to use those words).   I let Andy stand up on the church pew and flirt with the older members of the congregation; they love it, and I am proud that he is able to stand.   True, I have fine-tuned the art of multi-tasking between multiple occupations:  teaching, mothering, being a wife, chauffeuring, medical assistant, laundry expert, appointment negotiator, and calendar coordinator.   I would like to think that I have become more patient in the process, but it really depends on the day.  

Each day we have learned to thank God for the gifts we have received.   The support, prayers, and positive thoughts have outnumbered our endless hours at the hospital and doctors' offices.   We have meet families experiencing the same unknowns that Spina Bifida challenges us with, and have found peace and reassurance in their advice.   Thank God for family, and their willingness to do whatever we need!  

A year of unexpecteds - yes, but what a blessing they have been.   Happy Birthday dear Andy; we can't wait to see what you accomplish this year as well!

It's Up, It's Down, It's Up Again!

It's up,it's down, nope it's up again - one would think I was giving a sports play by play,but that was a better description of Andy's swallow study than anything else. Concerned that Andy was gagging too often and not handling solids well, the doctors ordered a swallow test for him. There's nothing like watching your child vomit on a live x-Ray screen.

They were actually happier with the results than they originally thought. Apparently, Andy has no desire to slow down in life - including for chewing. Instead he merely swallows everything whole. Obviously this causes a slight problem when trying to tackle a steak, so they have ordered think purees for now along with air puffs until my insurance covers the twice weekly therapy visits to teach him how to gum food, and me how to blend his new dishes. Now, we sit and wait with fingers crossed that the insurance picks it up - $283/hr is a bit expensive twice a week for 3 months. At the same time I now need to figure out how to make it to two feeding therapy sessions and his Early On pt. While teaching full time. I seriously wish someone would have later appointment times, or at least not be booked solid in them. In the mean time,keep your plates well hidden because he gets seriously pissed when you don't share whatever snack or meal you are eating!

July - "Bracing" - Let Freedom Ring!

July has led to many new "freedoms" for Andy.   Determined to not be left behind, Andy quickly grasped the concept of climbing stairs.  His legs have proven strong enough to hold his weight.  As Andy began to pull-up to standing, we noticed his right leg was weaker than his left.   His foot often rolls to the side so that he is actually standing on his ankle.   To help him, Andy received his first pair of braces called D-AFO's.   The braces fit into a larger pair of shoes and look similar to high top tennis shoes.   Andy doesn't seem to mind the D-AFO's; they allow him to have more freedom to stand longer.

Andy is now working on "cruising" and beginning to use a toy "walker".   What an awesome sight to see!   Definitely a new freedom for a boy who didn't know if he would have any movement in his legs when he was born.  

Robby, too, has been working on new freedoms - for mom that is!   Potty training is going well and success is in the near future.   Similarly, sleep has increased thanks to the removal of his tonsils and adenoids and the introduction of Melotonin.   Outstanding progress!  Beyond that...he's loving life!   Here's a clip of him singing "I Dig Dirt" - fitting since that is exactly what he is doing!

August brings the 1 year marker of Andy's birth.   It is hard to imagine that he is nearly a year old.   August also brings more appointments:  CT scan, neurology appointment, a swallow study (he's having difficulty eating solids - often resulting in gagging & vomiting), urology appointment, and eye specialist as well.   Here's to another crazy month - let freedom ring!
             Andy 11 mon.                                                                           Robby 2 yrs.

The Never-Ending Cycle...Good News, Bad News, Good News

Oh what a week it has been! Robby, my sweet little Robby, is slowly recovering from his tonsil surgery. His return home was conviently paired with Andy's additional teeth coming in. So far our hope for sleep has not really occured due to Robby's need for high dose pain relievers every 4 hours & Andy's tylenol (seriously, couldn't they be on the same wake-up schedule). One week after surgery and we're still getting up every 2 hours or so. I have faith that this will all be worth it ... some day. On a positive note, though, his MRI came back normal! Yeah, one last thing to worry about :) I've always been amazed at how many cute outfits stores stock for girls. While I consider myself and my bank account lucky that I have two boys, I never thought I would be searching for children's clothes with such a picky child. Robby's wardrobe consists of necessities: hiking boots (or mud boots depending on the weather), jeans (with pockets!), and a t-shirt. It is so depressing to pass up any cute clothes I do find only to know that he won't wear them. Seriously, he wears jeans to bed - so long PJ's (I even had to change him out of his hospital PJ's into jeans before the day was over). The only problem is that he won't even wear shorts. We're working on convincing him that jean shorts are okay as well. So as I scan the racks of clothing I now have to narrow his clothing items to jeans / jean shorts that contain enough pockets to house his tools. You've got to be kidding!

Andy has developed into quite the character as well. His "no fear" attitude, eat all outdoor objects in sight, and "don't mess with me attitude" can easily be forgotten when one looks into his eyes. Yes, he too, will be thanking God for those eyes just like his brother some day as he smiles his way out of trouble.

Andy had an action packed week as well. He was casted for braces on Monday. After visiting the orthopedic's office, he wasn't convinced that the standard AFO's (braces) would be right for Andy b/c they would limit any ankle and toe movement that Andy currently has. At that point the long battle to find a different perscription started. Three weeks later, Andy was not-so-patiently waiting for the plaster to dry. His new braces should be ready in two weeks!

And then...

We went to his MFB evaluation on Wednesday. This was actually our first positive experience we have had w/ MFB so far. His PT said that Andy is progressing wonderfully! So much so that she doesn't want him in any type of brace at all; to put him in one will limit any foot control he currently has. Instead, she would like to monitor his pulling up to stand over the summer months to be assured of what help he will need. This is amazing news!

And then...

I received a call from MFB that my insurance (Blue Cross Blue Shield) is labeling Andy's request for PT as a "review". This basically means that they need documentation that the PT he receives will benefit him. BCBS doesn't typically like to pay for cronic diagnosis b/c they do not see the value of improvement over a long period of time. What??? How is it that if a child can not walk they couldn't receive PT to teach them how to function? This made absolutely no sense to me. Regardless, we could opt out of the therapy or go ahead with it knowing that the insurance company could deny us (meaning we would have to pick up the cost of it). Apparently MFB charges by the 15 min. segment (4 x 15 for an hour = $280ish for a session). Since Tom & I don't qualify for the Children's Special Health Care, we would have to pay everything ourselves. Lovely... just as we are about to take another pay freeze & insurance hike.

And then...

I guess it does pay to set people straight once in a while. MFB called back to say that since we have had so many negative experiences w/ them (cancelations, no shows, problems with scheduling, clinic, etc.) that they will be picking up the cost of Andy's PT if BCBS denies it! Fabulous news!

So yes, a crazy week! I think I'm ready to go back to work now - sometimes those days are easier than being home - j/k :)

"Tools and Sawdust" - Tonsil Surgery

The countdown lasted three years and three months - today marked the day that HOPEFULLY Robby will begin to sleep better at night. Robby had his tonsils and adenoids out today. While not extremely large, his sleep study showed he stopped breathing several times during the night.

Having kept the surgery a secret for him, Robby agreed to "help" the doctor fix his table this morning. Thank goodness I remembered his tool belt b/c they wouldn't let him wear his jeans into the operating room. We convinced him that it would be dusty in there, so he would have to wear his mask so the sawdust wouldn't bother him. A few minutes later, Robby was fast asleep and on his way. Waking up after surgery, he quickly made mom proud as he told them his name was Robert and "he couldn't breathe". Apparently they don't hear this often from three year olds. Three hours later his favorite jeans were back on and his tools were in his pocket.

Robby also had a MRI done to rule out any neurological problems as well. We won't have any results until later in the week, but at least we know two pediatric neurosurgeons if needed!

So while we can't bribe him w/ popsicles or slushies, he's pretty content with laying by mom along with his tools, tractors, books, crayons, and don't forget "Curious George", "Bob the Builder", and "John Deere". They have to monitor oxygen levels tonight, but hopefully we are back home tomorrow.

Crawling Cross Country - Bracing for Braces

So much can change in so little time. It's hard to believe that last spring I received a phone call that would forever change our family's life. The months that followed were filled with "the unknown" and quite honestly, most of the "specialists" had no clue as well. We were told all of the "worst case senerios" to help us "prepare" for the possibilities. Ten months ago Andy lay on a hospital bed with his spine exposed.

And today... Andy is crawling all over the house. He pulls to a kneel, and yesterday pulled to a stand twice! We are beyond amazed at this little guy's determination (not to mention his stubborness - watch out if you try to take something away from him- what a stinker!). One thing is for sure Andy sure isn't going to let anything get in his way. ( I tried to attach a video but it won't load :( . )

New abilities bring new "challenges" as well. We're currently waiting for MFB and the orthopedist to agree on Andy's first AFO's (braces to prevent his ankles from rolling when he stands). Apparently e-mail is no longer instantanous, and phone calls take longer than a week to return. Until an agreement can be reached, Andy can not be casted for his braces. I hope a decision comes soon b/c Andy is not going to wait for them. Until then, he currently rubs the skin off of his toes & causes them to bleed. Now he wears shoes /sandals all the time.

Next week Andy starts summer therapy w/ MFB. Since Early On only takes place a few times over the four months of summer, MFB is going to supply therapy for him while I am off of work.

We're currently working on eating solids. While this doesn't seem to be problem for anyone else in our family (other than not eating), Andy often gags or throws-up on solids. Hopefully he can get better at this or else we will have to have a swallow test at the end of summer. Like everything else, I'm sure he'll get the hang of it soon.

Time does sure fly by... it seems just like yesterday Robby was picking up everything (dirt, grass, rocks, leaves, wood chips - you name it) and trying to eat it. Stairway gates were beyond numerous in our house, and screams for outdoors were typical. Round two has begun and Andy is following clearly in his footsteps.

Keeping Busy

Looking at life through the innocent eyes of a child (and then slamming the door shut when he doesn't like what he sees).

"Look mom, I found a catepiller!"

Robby tries out his new "tower" that Uncle Dan made him so that he can help in the kitchen w/out scaling the cupboards. Nice face huh? This is when he promptly told me to put the camera down so that we could move on to important things... chocolate cake.

Another outdoor lover! It sure will be hard to keep these two inside this summer; it better be nice weather that's for sure.

Andy's first turkey pose. Technically, Tom won the largest turkey bet, but I think my story was more exciting.

Other updates:

Andy & Robby continue to battle w/ sinus infection. Andy's PT had a vision person come out to the house due to his head movement that we refer to as the "Stevie Wonder". They have recommended he see an eye doctor (late Aug. is the first available appointment). He continues to crawl backwards and is working on moving forwards. Lately he has started to pull up to the fireplace as well! Hoping we can get him healthy soon so that maybe he will return to sleeping through the night.

We took Robby in to see a new ENT after the old one's cancelation of his tonsil surgery. Sometimes I just want to shake my head at how crazy things seem. While he basically agreed w/ everything the other ENT said, he also informed us that Robby was supposed to have a MRI done (to rule out brain tumors and other nuero. issues) and he will need to spend the night at the hospital. Both of these were written in the sleep study report but we were never informed about (more than 1 year ago). Seriously, how is it that doctors do not tell you what the paperwork says. So now we wait... we have to see if it is possible for both proceedures to be done on the same day. Ironically, the new ENT also stated that with the opening of the new children's hospital, they actually receive less time to perform surgeries due to conflicts in scheduling, so if we choose to go with this new ENT then we will have to wait until June before anything can happen. Did I mention that sleep consists of less than five hours of sleep a night interrupted by at least 6 episodes between the boys? I can't win.