Arthrogryposis Multiplex Congenita

*Yesterday was awareness day for AMC and we all wore blue.

*Gavin is an AMC kid and has a very classic case.

*Arthrogryposis occurs in about 1 in 3000 live births.

*Some kids have Arthrogryposis combined with another birth defect such as spinal muscular atrophy.

*Though the cause of Arthrogryposis is unknown it is thought that it can be caused by a virus or high fever. We do not know the cause of Gavin's, but we think it may have had to do with a seizure that his birth mom had around 12 weeks of pregnancy. We did genetic testing but thankfully nothing showed up.

*Gavin is affected from head to toe. From birth till he reaches eternity. And I am sorry for him, but thankful for us. We would not have gotten Gavin if he were born "normal". He most likely would have stayed with his birth mom. What would we do without Gavin?

*Gavin was born by emergency C due to meconium in the amniotic fluid as well as a decreased heart rate. He had to have chest compressions to get his heart beating fast enough and then he was life flighted to Sacred Heart. At birth he had a broken femur probably due to the stiffness of his legs and the contractions of labor.

*Gavin's head was flat on one side and had a huge bump on the other. This later required a helmet to help it to grow into a rounder shape.

*Gavin's left leg was folded with his foot touching his body and his knee pointing out to the side. His right leg was turned backward so that the front of the knee touched the bed when he laid on his back, with his foot sticking up in the air. He had clubbed feet, and was so stiff that he wasn't dressed until we got ready to leave the hospital. He has had serial casting, 3 surgeries and splints to help his legs and feet to be in a better position for sitting and standing.


*Right from the start Gavin could drink a bottle, but his jaw is affected and this caused him to be unable to keep a pacifier in his mouth. He has had some difficulty in eating because he gets easily tired and he eats slowly.

*Gavin had an undecended testical that later ended up causing an incarcerated hernia. This led to an ER visit and surgery. He continues to deal with severe constipation and at almost 5 we have yet to even get close to being potty trained.

*Gavin has a bifurcated uvula, which caused many ear infections. He would have a ruptured ear drum before I knew there was a problem. He got ear tubes and has been fine since.


*Gavin has endured a lot of pain and medical treatments. He has at times been fearful of any person looking at him because he was so used to getting touched and stretched and measured.

*Gavin gets frustrated and demanding, he gets difficult and has gone through biting and head butting. He has been so naughty at therapy I have wanted to never go back because of being so embarrassed.

BUT................


*Gavin is amazing, Gavin is charming, Gavin is adored by so many because he is a smart and determined boy. Gavin has fun with his sisters and friends. Gavin helps take care of his little brother. Gavin makes us laugh. Gavin has inspired sooooooo many people to not take the little things for granted. Gavin has brought out the best in people, in other kids. They see his needs and want to help. Gavin has girlfriends both young and old. Gavin wants to be on the worship team "someday" and Gavin Loves MONSTER TRUCKS.

*Many groups today are doing everything they can to make sure every baby born is "healthy". Well, it isn't possible unless some of them aren't born. That could have been Gavin's fate.

*I am so thankful to Gavin's birth mom for giving him to us. She gave him willingly, though she was young in mind, she wanted the best for him. And I am thankful to God. He gave him to us knowing the rest of our story, and He wants the best for us. I am thankful for all of you, our friends and family. You have been our support and you have helped make it possible for Gavin to participate in so many things.

Thoughts on Thursday

So here it goes, I am stealing someone else's idea and doing Thoughts on Thursday. I have too many thoughts to get it all into one post any other way.

The trip Jeromy and I went on was really a lot of fun. We did get some great pics of all of the wonderful sights; it was just more fun to post the silly ones. We were gone for a whole week. No kids and some free time to see the sights. The kids had a wonderful time with grandpas and grandmas and aunts, uncles and cousins. The girls got spoiled by gma Becky and gpa Mark, they went to a fancy dinner, got ice cream, new outfits, went out for hot chocolate and watched movies. Then the rest of the week they all got to play with their cousins, make forts, eat ice cream, make a really cool Father's Day cake and went down to Bayview to see some submarines.

While we were on our trip we found out Jeremy’s uncle Tim passed away. This was really a shock to all of us and very sad. Tim had heart trouble and had just had surgery. It seems he must have passed away a day or so after he got home. Mark and Becky have been working all week to pack up his things and set things in order. His memorial will be July 17th. Please keep Mark and Becky in your prayers.

So, Eli doesn’t sleep until after 11pm and then it is hard to wake him up in the morning. Overall I don’t think he is getting enough sleep. This affects everything and though he is generally content, he is not making any new progress that we can see. I have done some research and I am considering trying to get him into a sleep study. Some people with brain injuries do not produce enough Melatonin. I am hoping and praying that something simple like this could make a difference in his daily activities.

We finished school just before the trip and wow, it feels so good to be done. We immediately pulled the school stuff out of the bedroom and we are off to a good start on making it look more like a bedroom than a disaster zone. Goal: by next fall have the schoolroom in the new house set up.

Speaking of the new house, well we have stairs now. The progress is slow, but someday it will be done. The bigger Eli gets the more I realize how nice it will be to have a wheelchair/ hoyer lift accessible home. God knows our needs and I know it will be done in His time.

Thursday is almost over so I better call it quits before this becomes Thoughts on Friday. That just doesn't work.

OUr bIG TrIP

DoWntowN in ThE hiStoRic PhiLAdelPhia

thE ATlanTic oCEAn

THe bEst PaRT of ATlanTIC cIty



tHE AmaZING STAtue Of LiberTy

VIEwing tHE stAtue OF liBERty

OuR rOMantiC geT AwAy IN neW yORk

2 SiNglE BEds

Dirt Magnet

The shirt says it all!

Boys will be boys!

pictures by Aimee VanDenBerg

Remarkable Memories



http://www.remarkablememories.zenfolio.com/

Marathon Reflections

Well it’s been a couple weeks since I ran in the Ogden Marathon. I am finally getting around to jotting down my reflections from the race. As most marathoners could probably attest to, one tends to be left with some insights into one thing or another after running 26.2 miles. And so is the case for me. I hope this is not a self-touting blog but rather one of spiritual insight into the matters of the race that we as Christians run in this world.

I think that the most enjoyable part of the marathon (particularly the Ogden) is before the race actually starts. In the Ogden, one has the privilege of rising and shining at 4am and being bused up the canyon by 5am. Once at the starting point, everyone (5,000 freaky, smiling humans) gets to stand around burning barrels out in a dark, cold field. Sound like fun yet? Actually it is in it’s own weird way. Most everyone is smiling, laughing and talking with anticipation. There is a certain amount of excitement in the air and an understanding amongst fellow runners of what we purposefully put ourselves through to get to the starting line, let alone the finish. Finish?

Well, I see this moment as the Sunday morning church service moment. We as believers get up early in the morning, cart our whole smiling, cheerful and willing family members off to church. Once there we are usually not greeted by burning barrels but nonetheless are lifted up with anticipation, excitement, hope and faith. Our faith is increased by the presence of the Holy Spirit, one another and the speaking of God’s truth. It’s our starting line for the week and our life here on planet earth. But it is not the actual race let alone the finish. It’s just the start where excitement and anticipation abound.

BANG! The gun goes off and that means I have to start running. How does one start running a marathon, or any other race for that matter? One foot in front of the other. If trouble surfaces, then deal with it and figure out a way to keep going. I am reminded of the time I participated in another psychotic event also known as the Ironman. It was the first time I had ever swam in open water with thousands of other people all around me. The gun went off and I managed to get in the water and start swimming with the masses. About a ¼ mile out or so, I got kicked in the face and I started to get that overwhelming panicky feeling. I actually started hyperventilating. So, I had to pop my head up and tread water for a minute or so. It seemed like forever but I was absolutely determined that I was going to make it to the finish that day. After a prayer I decided to just relax, make it fun and enjoy the swim. Not long after that it was actually a fun experience. Very exhilarating actually.

So often in our spiritual lives we like to hover around the starting line with all the smiling, friendly faces. We don’t want to actually go do the race. Whether it be plunging into the unknown or enduring something impossible or seemingly too hard. Obviously, we need to lace up our spiritual shoes at the starting line and allow Jesus to lead us through the hard paths ahead.

This year I got to run the marathon with Stacy’s cousin John. This worked out very well as we had similar finish time goals. I wanted to get under 3:15 to qualify for the Boston Marathon and John wanted to run a 3:15 as well. At the start all the way through about mile 13, I pushed him harder than what he would of set out to do. From about mile 13 to mile 20, he pushed me harder than what I would of done on my own. Point being is that we pushed each other to do better than what we would of done on our own and we actually had fun doing it. That is, until about mile 20. I could tell John was feeling much more spunky than me so I told him to go for it and off he went.
Of course the spiritual application with this is that we need each other along our race. I mean, we actually NEED EACH OTHER! I’m not talking about the Sunday morning start line gathering and smiling and patting each other on the back and calling it good for the week. Sometimes we need to get in the trenches with each other. It is amazing how we can push each other through hard times and the burden seems twice as light in the process. Who knows, blessings and smiles often seem to be the result rather than despair and hopelessness.

With that said, from mile 20 on I got left in the marathon dust. I hit the wall and knew that it was going to be a long hard 6 miles to the Pearly Gate Ogden finish. Two things kept me going though; hope and a dream. I had hope of actually getting a personal record because John and I had pushed each other up to this point. I also had a dream; I wanted to qualify for the Boston marathon. Those two things kept me going even though every mile got harder and harder.

We as Christians need hope. Our hope is in Christ and we need to keep our eyes fixed on him. We also need to be following that dream that God has uniquely planted into each and every one of our hearts. He wants us and knows that, if we are in his will, we can pursue and achieve those dream(s). Without these elements we can give up or not keep going like we could. no real dream = wimp out

Mile 23 and I began to wonder if I was capable of running another 3 miles. I began talking and yelling at myself to keep going (yes, the psychotic part). Then I began to hear positive yelling behind me. “You can do it. Keep this pace up and you’ll be there by 3:15. Just stick with me.” “Thank you Lord,” I must of thought in my hazy state. Umm.. well anyway, this wasn’t our Heavenly Father providentially speaking directly to me but it sure sounded like it. Then the voices and running (maybe floating) bodies passed me. It was a pacer trying to get someone in by 3:15. Most marathoners know that pacers do their job. They get runners in to the Boston. So I latched on and tried to hang with them. I also grabbed my last nutritions (Gatorade, water, water on head, banana jammed in mouth) and kept going.

Like the nutritional stops at about every mile to three miles in a marathon, we need to take our daily nutritional stops spiritually. We need our spiritual nourishment every day. It’s what keeps us going in our race. Without it, we collapse.

Things are getting pretty hazy now. The pacer group began to pull away. I began to fall into despair again. Everything was screaming to stop. Somewhere in the midst of it all though I caught back up with the glorious Boston pacer group. The pacer was still giving words of encouragement but the runner stopped as I ran by.. hmmm I thought, that was weird. Not long after that, they caught back up to me, so I sucked right into their pack. The pacer looked at me with a nod of approval and without saying a word we knew what we were after. So, despite all common sense, I stuck with them and then I began to puke my guts out and then I began to yell at myself but I stuck with them. Yes, life gets ugly sometimes. I am pretty sure that pacer has a great story to tell about me but the fact of the matter is is that we all made it to the finish before 3:15 (my watch said 3:14.59 to be exact but my official time came in at 3:14.47). So, when I crossed the finish line and looked at my watch, it seemed like a God moment. Wow, those angel pacers sure know what they are doing. Anyway, the dream was achieved and the race was finished.

So, the aha of it is the idea of getting into the race. Whatever race that might be and whatever pace that might be. It doesn’t matter quite frankly. I have friends that kick my butt now in races but I also have people tell me they couldn’t run a ½ mile if they tried. I also have two boys that don’t walk. Their goals are to crawl and roll. Bottom-line, I know what really matters is simply getting in where you are, both spiritually and physically and taking that first step or crawl or roll or whatever. It’s a different race for all and we are all at different levels but what is important is taking off with that first step across the start and setting our eyes on the finish. It is not pretty sometimes or glorious but will you run the race that God has for you? It’s an adventure that is never forgotten or with regret.


Ok.. I’m off the soapbox.