Pages

Sunday, December 25, 2011

Hosp/PICU

Just to update on here....Ian has been in the hosptial since Monday, December 19th with RSV and pneumonia. I have started a care page...if you would like an invite, please let me know and I will get you on.

Happy Holiday to all.

Marci, Brian, Becca and Ian

Friday, November 25, 2011

It's been way too long...

It's been a very long time, hard to believe that Thanksgiving has past and 2012 will be here before we know it. Today, I wanted to find the time to say how thankful and grateful I am to have so many wonderful people in our lives. So many of you have reached out to us, in one way or another, helping, showing concern or just love…how wonderful and giving you can be. Since we have been back from Utah in April, my co-workers wanted to reach out but did not know how. It was really about thinking outside the box regarding how they could help. A free website called www.lotsahelpinghands.com, has become a great resource, it enables tens of thousands of families in distress to create private communities of friends and family members to assist them with their needs. They have been helping us is by making meals, it has been wonderful to be able to come home and just heat up dinner without having to do the prep work. For us, sometimes the prep can take double the time it should take, stopping many times to do something for Ian, it can make the dinner time routine stressful, when you know you other things to do that evening. Those meals have been wonderful so a special thank you. To all the others who have contributed in ways we don't know about, a very special thank you as well. Those of you who know me well, know that asking for help is not in my nature…so it has been hard for me to accept this, however, we can’t do it all on our own. If you are interested in helping here is the information on the site along with the name and email of the coordinator, Cheryl Snyderman, bayforty@aol.com, for “Friends of Marci, Brian, Ian and Becca”, https://www.lotsahelpinghands.com/c/643473/. In addition, here is an article on the site, http://www.washingtontimes.com/news/2010/jun/28/wetzstein-helping-hands-site-aids-families/.

Ian is doing well, holding his own. He did horseback riding again this fall with his back rider, Smokey loved having Ian back and Ian loved seeing and riding Smokey every week, we look forward to the Spring session. He is doing great in school, reading some words and able to decode cvc words. He has told Brian and I, on numerous occasions he is going to read by the end of the year. He also wants to be able to tell time by the end of the year. Keep up the good work little man you are on your way. Once again proving to be one of our heroes, showing us time and time again how hard work can get you through each and every day.

Becca played field hockey this fall and did great. She learned many new skills and blocked quite a few goals. In addition, at the end of last school year, she got braces, what a difference they have already made. She is doing well in school, got an A in math and a B in reading on her 1st quarter report card. She continues to be our other hero, showing us each and every day what a wonderful girl she can be, loving and caring.

In their own way, both kids are comedians, they don’t even realize the things they do and say and how they make us laugh. It’s wonderful and I am going to try to start sharing them with you all.

As Thanksgiving has come and gone for 2011, I wanted to share with you what another blogger put on her blog and just how true it is…I am awed and uplifted by parents who struggle daily with some tremendous challenges that their children’s disabilities bring. The ability of these brave parents to find joy and gratitude in their difficult situations is nothing short of inspiring—even to one who lives a similar life. A person who can look past the medical issues, past the behaviors, past the limits...to see the beauty and courage and strength and gracious soul of their child...is surely one who has great wealth. I know it can be hard at times to feel grateful and I can fully empathize with families who are reeling from the unexpected shock of a painful diagnosis or a downturn in their child’s condition. In addition, relating to those momentary setbacks we all experience where reality serves as a magnifying glass through which we see the imperfections in our situations. If you are having trouble finding your piece of good fortune, please, look for the little things to be thankful over. Everyone deserves to know that life can be good. People in our lives need to know that you are grateful for them.

Please share with us what you were/are thankful for...

Wednesday, July 20, 2011

Our Wonderful Family

Pictures are a wonderful.....something to always hold onto....
Treasure Yesterday, Dream Of Tomorrow, But Live Today




Friday, July 15, 2011

Another wonderful mother of a child with a disability posted this...
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.


Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.


As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.


How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.


I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.


From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.


You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.


You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.


You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Wednesday, June 15, 2011

Finally an update....

It’s been quite a while since I have updated our blog, I have thought about it a lot but then just don’t. It’s hard to believe that on Friday the school year is over and Becca will be in 3rd grade and Ian will be in 2nd, where did the year go. This year has brought many highs and lows…some of them I have already shared while others I have not. Utah has come and gone in April, it was not what we were expecting…I started to but something together but then stopped, not sure why. Maybe just not ready to put everything in writing yet…well here it goes. While we were there, both kids went through many tests. For Becca, everything came back looking good. For Ian, we were hit with more information, on top of having a neurotransmitter disease, he also has a neuromuscular disease. What does this mean….what the wonderful MD’s in Utah told us is that his nerves and muscles don’t talk. The nerves die and because of that the muscles become weaker. At this time, we don’t know which one he has meaning that it’s progressive, non-treatable, and non-reversible. Neuromuscular diseases fall in the basket of muscular dystrophy. As you can imagine, this hit Brian and I, as well as our extended family hard. Not exactly what we were expecting to find out when we went to Utah. Ian has undergone some more tests since we have been home…a swallowing study, which came back normal, as well as a sleep study, which also came back normal. He has started some new medicines, which are helping in many different ways. The best one is neurontin…one of the things is used to treat is neuropathy…this has helped significantly with his leg and feet pain, which in turn has helped with his sleeping and our sleeping. While Ian is still getting up quite a few times during the night…he will now go back down easily when before he would not go back down at all. More sleep means better moods and a much happier child as well as parents. It also means that he is doing a little bit more since he is feeling better from more sleep. He is doing great with his chair, flies around, he’s all boy. We are all doing well and moving along with everything. Oh one more great thing, we had a ramp built onto the house…the expression on Ian’s face when he realized that he could get in and out of the house on his own and no one had to carry him anymore was priceless….one of the many priceless moments we are going to have as we continue to search for answers.


One thing I am going to work on doing is posting more often as well as sharing all the wonderful things we are doing….after all….treasure yesterday, dream of tomorrow but live today.

Thursday, January 27, 2011

How are we doing and where are we going....

A few days ago I was on the phone with a dear friend. She began to tell me a story of being out with friends for dinner the night before. They asked her how Ian was…she said he was doing great…I said really you think so. Well she proceeded to explain to me how she saw it…compared to last year and when he first got sick in July of 2009, he is doing well. Back then he was not able to hold himself up on the sofa, not able to feed himself or give himself a drink from a cup, he could not hold a pencil/pen to write. As she put it, he was a wet noodle. He is now able to hold himself up and sit on the sofa, at times he is able to feed himself (sometimes we will feed him as it can take him hours to feed himself), he can pick up a cup and take a drink. One of his favorite pass times is to write... There are some other things he can do now that he was not able to do back then or when he was at his worse. If you look at him now compared to where he was before July 2009, then no he is not doing great. He is not walking, can’t hold his balance…he is now wheelchair bound (we have gotten him his own set of wheels, Zippy, as he calls it), we have to stand behind him when he is standing to brush his teeth or use the bathroom. I thanked her for her view as I would not have seen it that way….so thank you. If you ask me how Ian is doing, he is doing great….one day at a time and holding his own.

Our next steps…it’s official we are going to see the specialists in Utah. They actually want to see both kids…we will be there for 4 days in and out of the hospital. We are not sure what the trip will hold for us but we do know that Ian needs to have another spinal tap before we go. The reason, they want to be able to compare last years to now…when he had it done last year he was not on any medicine it was just to see if there was a dopamine deficiency. Once these results are in, they will be able to tell what the medicine is doing and making any chances if needed, which we think there will be. As for Becca, we are not sure what they are going to do…reason for her going, we have had an initial test done on her (prolactin level) and it was elevated…what does this mean, we are not sure except there is a possibility she has a dopamine deficiency as well…she does have some other signs as well. At this point they say Becca does not need to have a spinal tap however at some point and time she may…we just have to wait and see. Here is some information on why Utah


The Pediatric Motor Disorders Research Program, under the direction of Dr. Kathryn Swoboda, is focused on a group of disorders characterized predominantly by defects in motor function, with onset in infancy or early childhood, including:
• neuromuscular disorders, including spinal muscular atrophy, congenital myopathies and neuropathies and muscular dystrophy

• neurotransmitter deficiency disorders and childhood onset dystonia
• alternating hemiplegia of childhood.
Academically both kids are doing great....thriving in school.

So we are looking forward to our next steps in our journey…