Failing to Operate

I had this bad feeling... it didn't go away...and sure enough my suspicions were true - Robby's tonsil surgery was canceled late yesterday afternoon. With a grocery cart filled full of yougurt, pudding, popsicles, and ice cream, the ENT office called to let me know that St. Mary's Hospital denied his surgery for this morning due to his heart murmur. Sitting there in stunned silence, I asked the most obvious of questions. "Are you serious? Don't you realize it is tomorrow? What took them so long to cancel it - he's had the heart murmur since he was born; the surgery has been booked for more than a month. Isn't there anything I can do?" Simply put...no. Today's medical world does not operate (nice pun huh?) like anyone I know. They refuse to be considerate and fail to recognize that some of us work for a living. They didn't care that I had to pre-register him 3 times b/c they kept missing information. They couldn't process my insurance b/c their computer system and back up system were not working. And now, they wouldn't consider him for surgery even though they operated on him in the same condition a year & a half ago. It is no wonder that people become frustrated w/ our medical society. Ironically, someone from registration called me 30 minutes after I received the cancelation to tell me what time I should arrive at the hospital this morning. Nice. So I'm trying to let it go. We've had two surgeries canceled on us in the last two weeks. Thank God I have awesome co-workers and substitutes that have let me make-up these days since I have no more sick time left. We've decided to no longer use St. Mary's services or doctors related to them. And now, we wait. Robby must be cleared through a pediatric cardiologist before his surgery. Once done, the surgery can be rescheduled. We already have appointments for a new ENT (through DeVos) as well. We were hoping to tackle the 7-10 day recovery over Spring Break so that I wouldn't lose more time off, but we'll just have to wait and see now. I'm begining to think that having a child w/ Spina Bifida may not be that difficult - dealing w/ the doctors might be what throws me over the edge.

Livin' It up!

Getting ready for sunshine, warmer weather, and cruising around in my stroller! Taking time to celebrate Robby's 3rd birthday with Great-Grandpa Mathews & Great-Grandpa Voss. More than 185 years of wisdom & fun between the four of them.

Andy isn't too sure of his latest friend - George. Who wouldn't be when he's the exact size of you? What a pair!

My little buddy never stops smiling! What an inspiration to us all. Love ya more than words can say!

Two Steps Forward...One Step Back

Two steps forward...one step back!

This week we continued our mad dash of doctor appointments during the month of March. Andy had ear surgery on Monday, and I am happy to say he is doing extremely well. We ran into a few glitches along the way. Andy's ENT primarily does his practice through St. Mary's Hospital (which we did not know). After preregistering him, St. Mary's called and denied him surgery citing his SB & hydrocephalus. I was shocked! SB has nothing to do w/ his ears, and he is supposed to be treated the same as any other child with the exception of not being introduced to latex. It didn't help that they called and told me this during the day while I was teaching. Sometimes I think it pays off to be demanding though. After calling his neuro's office and placing numerous phone calls, a spot opened at DeVos w/ a partner surgeon. Two days later, Andy went into surgery flirting with the nurse, and he came out of it happier than one could possibly be. One step forward!

Robby had his appointment today with the Sleep Clinic. During the last week, Robby has become the new owner of his dad's old John Deere Grater (a piece of construction equipment). This was our latest bride to get him to sleep in his own room. It's amazing how much more room a bedroom has when four people are not sleeping in it! Robby has taken up camp on the floor of his room, but at least we are off to a start. He still wakes about 5 times throughout the night, but we are hoping that his tonsil surgery next week will decrease this. At this point we do not have to go back to the sleep clinic unless another issue comes up. Second step forward!

And then... we were told today that we need to send Robby to a pediatric heart specialist. Tomorrow, at this 3 year check-up, I have to have the pediatrician make a referral. Apparently Robby's heart murmur has grown louder and is now in a new location from where he previously heard it. I don't know what to think. Some heart murmurs go away as children grow older, but seriously, who wants to hear that their child needs to go to a heart surgeon? No one. One step back!

After reading other people's blogs, I started to think...you've got to be kidding me. How is it that every other family has such amazing children that never fight, that smile at the camera, that never grab Sharpie markers. But then I thought... our life would be dull if I just told you about all of that. After reading this, don't you just have to laugh, smile, or cry? I never thought my phone list would have this many doctor's names & phone numbers saved in it under frequently called numbers. I'm on a first name basis w/ many of them and their secretaries. Tomorrow, I figure I'll just add another one to the bunch.

Mr. Clean Eraser Saved Our Son

You know that moment of disbelief... the one where your mouth drops open, and feels like a century went by in the ten seconds or so that have passed? You begin to question... is this a dream? Did I really hear that right? And then you realize, yup, you did.

It seems as if those moments are growing in our household lately. While we have been struggling to recovery from every known virus one can imagine, dull moments have not been few. Last week, Robby scaled the bathroom cabinet to "wash" his play kitchen toys in the bathroom sink w/ the foam, pump soap. It was shortly after the waterfall that I noticed this. Later, after removing any form of step-stool imaginable in the bathroom, my amzing gymanst managed to locate my liquid make-up - which he quickly put to good use covering our 5 ft. x 3 ft. mirror. His good heart didn't stop there though; he decided he needed to clean the oil base foundation w/ soap. I have yet to clear the streaks from the mirror. It's a good thing I love my now 3 year old!

While some may laugh and shake their heads, only a few can totally appreciate the moment of true strength like this next one. Getting ready for church takes our family a fair amount of time, so when Tom wanted his hair cut this past weekend, I simply tied it into the routine of getting ready. Andy was sleeping, and Robby was watching a movie. Stopping to check on him once during the process, I quickly finished Tom's haircut and started to clean-up when I heard an unmistakable yell come from downstairs. You see, our lovely child decided to climb up onto a chair and grab two Sharpie markers from the bin (not easily accessible). After redecorating our brand new kitchen cupboards, he gave the entertainment center a makeover, and finished up by using the Sharpies on the brand new flat, screen TV we just bought at Christmas. (This is where you insert the drop of the jaw and act of disbelief.) Let's just say, Mr. Clean Eraser saved our son that day. He's still alive and working on his next unbelievable feat.

On to other news... March has been a busy month with one doctor's appointment after another. So far, Andy's 6 month checkup showed him to be in the 75% of height, 50% of weight, and 90% for head. His urologist appointment went very well. At this point the doctor simply wants to make sure his kidneys and bladder stay healthy. We really won't know much about his ability to be potty-trained until he is at that age. Andy's numerous ear infections have introduced the need for tubes next week. Tomorrow is a trip to the neurosurgeon - which hopefully will bring a good 6 month review as well. Future appointments include: sleep clinic, Robby's 3 year check-up, tonsil surgery, Mary Free Bed PT evaluation, and Mary Free Bed clinic.

Like I said, there really isn't a dull moment. To be on the safe side, I did pick up a value pack of Mr. Clean Eraser Pads at the store on Sunday; let's hope I don't have to use them all that soon.

Winter's "Cold" Season

The "cold" season has hit our house hard this year. In the past two and a half months, not a day has gone by without someone having an ear infection, fever, hacking cough, pink eye, sinus infection, etc... you get the picture. Our vaporizer is working on overtime, and I'm pretty sure we should have invested in Tylenol, Claritin, & Nyquil stocks. I, for one, am hoping that Spring arrives soon!

March is also the start of many, many appointments for us. Robby's tonsils & adenoids have been scheduled to be taken out at the end of the month. He also has appointments w/ the Sleep Clinic & doctor (only 8 days until my baby turns 3 - wow!). While toliet training has definitely taken a back-seat lately, he asked about going to "playschool" - got to love Calliou. I told him they only allow kids who are toliet trained go - I think I'll be playing that video often now :)

Andy just had his 6 month check-up. He's 75% for height, 50% for weight, & 90% for head (this is up a bit from their other measurements, but I figure we can only compare the neuro's numbers for consistency sake). His pediatrician is extremely pleased that he can sit unassisted, and that he can pull himself to a crawl position. Future appointments include: urologist (w/ kidney ultrasound), neurologist, Mary Free Bed Clinic, Mary Free Bed physical therapist, ENT (he just finished double ear infection again - may be heading towards tubes), and weekly PT appointments.

Tom's yearly snowmobile trip was canceled due to him getting the flu. He had/has severe sinus infection & had to have a CT scan done today. The headaches are becoming increasingly worse & his doctor was hoping the infection did not travel into the brain. We're thinking on the positive side here & hoping for the best.

So yes, I'm hoping for spring. Warmer weather, less colds, hopefully more sleep, and a brighter outlook. We'll keep you posted on the outcomes of the appointments. Cute pictures to come - for some reason they wouldn't load tonight.

Making Progress

Thanks to Andy's weekly physical therapy and our daily work with him, he has made great progress during the last couple of weeks. Here's his photo update for 5 1/2 months. It will be interesting to see/hear what his doctors think in March.

Andy can now sit up by himself for short periods of time... then he either flattens into a yoga position or falls over until someone rescues him.

Andy is capable of rolling over in both directions, but he doesn't like to. His stubborness shows through when he fights you by resisting the entire time to roll. Here he's pushing up for a better view. Instead, he has opted for scooting backwards or performing 360 turns on his belly.

Lately he has amazed us as he pulls his legs up beneath him (indicating that his hamstrings have ability)! This gives us great hope for crawling!

Sleep Talker Becomes Sleep Walker

Sleep issues are very common in our family. Both grandpas have sleep apnea, and I suffer from hyper insomnia (the ability to literally fall asleep in under 30 seconds). Unfortunately, Robby didn't inherit the exact same type of sleep issues as me. As many of you already know, we suffered through his first year of living with little sleep. Shrugging this off, we thought the 2nd year would be better. After two years of having less than 10 nights of total sleep, we were finally granted a sleep study at DeVos. True, I had to talk my way into an earlier appointment, but none the less, we found out that Robby had a heart murmur, restless leg syndrome, and sleep apnea. This week we may have added to the list.

Thursday night I awoke to weird sounds at 3:30am. This was about the 3rd time I was up that night, so I simply rolled over (Robby refuses to sleep in his own room not to mention a bed of any type) to check on him. Instantly I became alarmed when he wasn't there! After scanning the bedroom to see if he rolled to another spot (which often happens), panic sunk in. Robby is terribly afraid of the dark as well, and only a little night light in our room shone through the pitch, black house. Calling out to him while trying to not wake Andy, I was quickly rewarded with a 2 1/2 year old walking back up the stairs w/ tools and paperwork in his hands. When asked what he was doing, he simply said, "I was seeing if Grammie was here yet, so I got my tools ready to help her." Five seconds later he was fast asleep. Me on the other hand, couldn't calm my brain back down. Yes, this was our first case of sleep walking. While he's done sleep talking, I've a new appreciation for dead-bolt locks.

This week has brought on yet another virus as well. I've pretty much decided that sleep will always be over-rated. Robby and I took shots of Tylenol last night and throughout today as we battled his 103.9 degree fever. Feeling bad, I let him take a nap this afternoon since he truly didn't feel good. Now I'm in for the long haul as he makes it to probably around 11:30 before he'll fall asleep. And where is Tom during all of this you might ask... usually fast asleep, but tonight celebrating with a long time grade school friend at his bachelor party. For some reason I don't foresee sleeping in in my future as well. To all of you who enjoy your seven, eight, or even more hours of sleep each night, remember how lucky you are!