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.