The Mathews

The Mathews

Saturday, December 31, 2011

A Merry, Merry Christmas

Merry Christmas from the Mathews' household to yours!

Christmas through the eyes of a 3 1/2 year old often tells us the little things we forget or are too busy to appreciate.   Here are a few highlights from this year's celebrations.
  
****Why are the wisemen riding camels?   Don't they know it isn't safe; there aren't seatbelts.   They should be riding in cars or trucks to see Jesus!
**** Jesus and Santa can't be watching me ALL the time; they'll be busy making everyone's toys.
**** Does Jesus get presents on his birthday?   How about cake?   I don't think he can have cake though; he's too little to chew.
****(When shopping for Andy's Christmas present)  Would Andy like that?  I don't know, but I would.
**** (Santa called to ask Robby for directions to his house on Christmas Eve.  Robby's response...)  Just go to Fruitridge, and keep going.   Ed's house (our neighbor) will be there, and keep going and then you're at our house.  
**** Dad, how does Santa fit down the chimney?   Well, if he breaks the chimney, he's gonna have to pay for a new one b/c it's really expensive. 

Santa went over so/so this year.   Robby adjusted well to the "jolly, old elf".   (Picture from the Spina Bifida Christmas Party).


Andy, on the other hand, did not want to have anything to do with the strange looking old man.


Favorite gifts:  
Robby:  A bucket of PVC pipes that he can tear apart and reassemble hundreds/thousand of times.  So far he's made sprinklers, fixed pipes, changed parts, and the list goes on....
Andy:  A pretend phone "hello".  (Hopefully he won't break ours now - he LOVES talking on the phone) & Cookie Monster slippers.

Here is the best Christmas gift ever!



video
 
2011 is going out w/ a positive outlook. I had to have a birthmark removed from my face (yup, my face. Nice holiday break huh?), but luckily it was pre-cancerous. Better to be safe than sorry. At the same time, Andy's hip x-rays came back great! 2012 - here we come!

Sunday, November 27, 2011

Full Speed Ahead

Ladies and gentlemen, start your engines…literally. This past month I have been reminded how quickly time flies by, and my boys have embraced it head on.  Fall is truly a busy season for our family. School starting, cross country season (3rd place finishes for both my boys’ and girls’ teams), our annual hayride, Halloween, leaf raking, leaf raking, and more leaf raking.


Amidst the business of it all, Robby and Andy discovered new “skills”. Robby gave us a quick reminder that he is 3 ½ going on 16 when he started the engine of the car so he could “get it warmed up for us” – oh what a thoughtful child! Similarly, Andy has a new found love for opening and closing drawers and cupboards. I really wasn’t expecting him to crawl inside the drawer, stand up, and attempt to reach his snack on the counter. Amazing? Yes. Terrifying? Yes. And then I had the motherly decision to battle… grab him (the floor is tile) or run and grab the camera? I chose the camera!


Andy’s desire to become independent has exploded. “Andy do it!” is a common expression used as he attempts new challenges. To encourage him, his PT suggested a walker. She hopes that Andy will realize walking will be a quicker form of transportation for him, and once he feels more confident standing and walking, he may do it independently. For now, he stands and cruises everywhere hanging on whenever possible. He is gaining use of it day by day. The best part is that Robby and the other kids view it as a normal part of life. The kids take turns w/ it (just like they did with the little kid walkers – zooming around the house like racecars), but when Andy needs it, they bring it to him. It is truly a beautiful sight to behold – a boy who wasn’t supposed to walk shows us that God made different plans for our “Miracle Child”.

 






Side Note: Robby’s sleep results came back; he still has obstructed sleep apnea (we were hoping to eliminate this when he had his tonsils and adenoids removed). His oxygen and CO2 levels are off as well. We’ll find out more in Dec. at his next appointment.





Tuesday, November 1, 2011

My Church Babes

"Robbbb-be!"  Clear as day Andy's new love of words can be heard in the quiet church as Saturday night mass is about to begin.   Attempting to "shh" him only brings giggles and louder shrieks of "Robb-be!"   Instead of shrinking in horror, I merely smile and convince myself that is Andy's form of prayer to God.  

Our church, St. Mary's, was built more than 100 years ago.   "Quiet rooms" did not exist back then and today's verbal child can be walked back to the entry area for a moment of "regrouping" before taking another slab at the hour of quiet.  

When Tom & I chose St. Mary's we did so because of its laid back atmosphere and acceptance of everyone.   As an older congregation at the 5o'clock mass, our boys have become 2 of the several "church babies".   The "older" congregation watched our boys grow, payed for their health, laughed at their never-ending energy and ideas, and re-assured us that their children once did the same thing.   It is so nice to hear this when episodes like these happen:  
*  Being a builder, Robby repeatedly emptied (after I refilled) the church pews of the hymnals to build a skyscraper in the pew.   When it began to lean, he looked over and said, "Bring the crane mom.   There's a problem!"
*  In an attempt to quiet / entertain the boys, they are allowed to bring a "silent" toy to church.   Sitting between them, the 9-11 homily focused on "letting go" - "forgive & forget".   Glancing from one to the other a look of horror came over my face.   Robby had pulled out his 12 ft. measuring tape (he'll only play with the real ones now) and extended it out at shoulder level a good 6-8 feet.   Extending across the isle the metal beam hung suspended for a mere second or two, but I envisioned it snagging the elderly couple in this pew behind it.   Striking it down and grabbing it quickly from Robby's hand, he turned to me and stated, "Just let it go, mom.  Let it go."  Clearly he's a smart boy.   Meanwhile, the older couple behind us nearly had a heart-attack from laughing so hard.   The lady was elbowing her husband in the ribs and pointing.  
*  Walking out of church one weekend, Robby discovered the holy water located by the doors.   Showing him how to dip his fingers in and make the sign of the cross wasn't quite enough for him.  I saw the gears moving in his head as pictures of pools and puddles brought an instant smile to his face.  Robby's splash and smile made me truly grateful that a "pool" baptism was not at this church.  

My church babes often leave my tired but content as we walk out the doors and see the glowing smiles and faces of our elderly friends.  We are blessed to have them!  

Friday, September 2, 2011

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!

Friday, August 19, 2011

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!

Tuesday, July 26, 2011

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.  
video

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!

video

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.

Thursday, June 16, 2011

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 :)

















Monday, June 6, 2011

"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.

Wednesday, May 4, 2011

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.












Saturday, April 16, 2011

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!

Wednesday, March 30, 2011

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.

Sunday, March 27, 2011

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!

Wednesday, March 23, 2011

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.

Monday, March 14, 2011

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.

Saturday, February 26, 2011

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.

Wednesday, February 2, 2011

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!











Saturday, January 29, 2011

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!

Tuesday, January 18, 2011

The Baby w/ a Scar


Sick of being sick... that about says it all for this household. The boys and I started out the new year (mainly the entire 2 weeks of winter break) sick w/ a virus. Andy had double ear infection, and Robby quickly followed w/ an ear infection as well. Tom joined the happy crew on Christmas Eve & we finally all made a recovery just in time for us to go back to work on Jan. 3rd. Low and behold, that didn't last long. Once again the boys and I came down w/ a new virus a week later & the sinus pressure, endless coughing attacks throughout the night, and yet again another ear infection for Andy appeared. Needless to say it is 18 days into the new year, and I am sick of being sick and having sick children. The pediatrician said if Andy has one more ear infection we are headed to the ENT - I feel tubes will be in our near future.

Today Andy had his monthly head ultrasound and neuro. appointment. I saw the new children's hospital as well - it's beautiful! We are so lucky to be so close to an awesome facility! Andy's ultrasound looked great. His head size has grown, but when considering he has also put on some weight (now 16.5 lbs), it was still within his growth curve. The neuro. doctor said he looked great; he calls him the "baby w/ a scar" because at this point that is the only sign of SB that is visible. True, this may change once we witness how much Andy will be able to do w/ his legs.

New tricks... Andy has decided his toes are a tasty treat :). While this may not seems monumental to most parents, the fact that Andy can actually raise his legs to his mouth is huge! He now rolls over in both directions (although this has slowed a bit), pushes himself 360 degrees around on the floor, and loves to sit up. He can maintain head control & body control by holding onto one of our fingers. The PT hopes he will be able to sit upright by himself by 6 months; we're on the right track. Best of all, he has the most beautiful eyes, eye lashes, and smile that will melt hearts in a minute.

Robby has also been a great big brother. He too has joined in the spirit of making Andy one of the family as he eagerly awaits until Andy will be able to rough-house with him. In fact, he has already begun his lessons. The other day Robby wanted to help Andy w/ his therapy (yes, he actually calls it physical therapy - his vocabulary continues to amaze us). He quickly pulled off Andy's socks and said it was time to do joint compressions. He grabbed his feet and started pushing on them until we could grab him. His response - "What? I was just helping." Later Robby decided to help Andy practice his rolling, so he grabbed his body and whipped him over onto his belly. Yes, Andy will grow up to be strong and hold his own. We eagerly await the day that he will be able to fight back. Is that wrong to say? Nope - not in this house. He'll definitely learn how to hold his own :)