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.

Opening Day - Turkey Season

For most hunting families, the term "Opening Day" tends to refer to the man-made holiday of deer opening season in the fall. In our family, however, it also refers to the famous spring sensation of Turkey Season. Having grown up in a hunting family, it still amazes me how many hours and how much money is spent on sitting in the cold waiting for an animal to read your mind, but it is one of those things that you just get used to. This week I could have taken all bets on getting the first bird. Monday afternoon we were on yet another trip to the pediatrician's office only to discover yet another virus for the season. Andy had not eaten solids in four days and was throwing up his entire bottle (usually all over me). On our way there I had just passed the East Beltline and Lowel exits. Spotting the ugly bird (seriously, they are not pretty), I slowed down but was happy to see it moving rapidly across the 3 lanes of traffic. Realizing that the pickup truck beside me was going to take it out, the bird turned around and ran smack into my car. Turkey feathers went everywhere. Tom's response: "Did you stop and get it? Was it male or female?" How long was the beard?" So yes, season wasn't technically open, but I took the winning "hit" this year.

Optimistic - that's the best way we can describe this week's appointments. Having started out on a low note w/ Andy's virus, I was glad to hear that his tubes look great from his ENT. We don't have to go back there until December! On Friday we had Andy's Mary Free Bed Clinic appointment. The physical therapist was more than pleased with his progress. He is exactly on schedule with where he should be. We have to continue to work on strengthening his core so that his back muscles do not become strained when he sits & leans. She has also agreed to continue his therapy during the summer when Early On switches to once a month instead of weekly. Andy's hips look great, but the doctor wants to ensure that he is not missing anything, so we have to go back in 3 months for an X-ray to ensure that they will be able to hold his weight before he begins pulling to a stand. At that appointment he may also be looked at for braces. Up to now we have been blessed that he hasn't had to wear any. Once Andy begins pulling up and hopefully standing on his own, he will need help supporting his weight since his calves are his weakest area at this point. The doctor does think that Andy will be able to walk without them as he gets older! What great news to hear!

Our sleepless nights have been at an all time high this past week as I pray for the day when I might gain more than 3 or 4 hours of sleep. With the cancellation of Robby's surgery, his nigh time interruptions have increased to 5 or 6 each night. Andy's inability to breath hasn't helped, so I'm definitely walking around in a daze these days. We hope to hear positive news this week at the cardiologist so that the surgery can be scheduled. Thanks for all your thoughts and prayers; God has done amazing things for us!

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.