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.

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!