Sunday, April 17, 2016

Grateful for Insurance

On Friday, we had Ian's model waiver meeting. What is model waiver you ask, well it is one of the Medicaid programs, which is available to only 200 people is the state of Maryland. It is designed to avoid costly long term hospitalization of children with complex medical needs and disabilities by providing medically necessary supportive services in the home funded by Maryland Medicaid. The serve children with complex medical needs who are at risk of long term hospitalization/institutionalization without necessary services in the home and who are under the age of 22 at the time of the referral and are not eligible for any other Medicaid funded programs. 

Every 6 months we have to have a meeting to go over changes and coordinate his care for the next 6 months. These meetings can be tedious, even when they are about your child. Everyone who cares for Ian is at the meeting....his care coordinator (Medicaid case manager), pediatrician, home nursing agency, hospice agency, and a parent(s). We go over everything; all his doctors, when he saw them last, what was said and done and when he will see them again; all his medicines (and he is on quite a few), how often he gets them and his doses; all his equipment; all his medical supplies (a lot of those as well); his nursing needs and the hours he gets (what our private insurance does not cover Medicaid does); and his hospice needs. At the end of the meeting, the cost of services is gone over...if Ian was in a facility it would cost the state over $400,000 a year to care for him. By us keeping him home (would there be any other way), it cost the state just under $200,000 a year to care for him. I can't imagine what it would cost us without insurance....and today I am grateful for model waiver so we can spend our days with Ian home. 

Monday, April 4, 2016

Welcome to Holland (Part 2) by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland.

I remember clearly my shock, my fear, my anger -- the pain and uncertainty. In those first years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Welcome to Holland by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a chance in the flight plan. They've landed in Holland and there you much stay. 

The important things is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you much go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced thank Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away....because the loss of that dream is a very very significant loss. 

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.  

Caregiver Stress

I subscribe to an electronic magazine, The Complex Child. Some months it is extremely helpful, while others no so much. This month deals with Caregiver Stress.

Caregiver stress is something we hear about all the time as parents of children with special needs. Though the term is used for all caregivers, it is usually when a parent is the caregiver that we tend to deny it happening. 

What is caregiver stress?
Caregiver stress is defined as a condition of exhaustion, anger, rage, or guilt that results from unrelieved caring for a someone who is chronically ill or disabled. 

There are three main types of stress, and the first is physical stress, which is just what it sounds like. Caregivers are constantly lifting heavy and cumbersome medical equipment, wheelchairs, other adaptive equipment, and the child. Often, they are not using proper lifting techniques to save their backs, knees, and other muscles/joints. This in not intentional on the caregiver's part, as often there is no clean, appropriate place to change a 12-year-old's diaper, or to cleanly cath a child. The caregiver has to resort to moving in awkward positions, thus putting additional atrain on the body. There is also the physical wearing down of their bodies due to lack of sleep from tending to their child's many needs, and the constant traveling to and from many medical appointments. These things can take much of a toll on the body as lifting ca.

The second is emotional stress, which can have the same physical symptoms as physical stress. Emotional stress is when the caregiver is constantly worrying over money, lack of time, illness or other concerns. A caregiver can have constant guilt over trying to balance the needs of the child with special needs with those of any other children or significant other. Caregivers often feel alone as support groups aren't always at convenient times, or there is not childcare to even go. They can lose their friends as the friends don't understand this "new" life, and even family can shy away in fear of doing something wrong, or not understanding what the caregiver needs. This all adds up to an emotional roller coaster that can negatively affect the health of the caregiver, who often feels isolated and alone.

Lastly is mental stress, which is a little different from emotional stress. Mental stress is the constant worrying over everything you have to do. Did you get the medications correct, forget any appointments, and did you order the correct supplies this month? It also encompasses the worry of juggling school schedules, work schedules, medical appointments, and any other activities. Caregivers often have to make sense of the huge amount of information that streams in and try to figure out what to do next. They are scared and worried about the future, especially what will happen to their children when they are gone. 
By: Angela Sittiler

Sunday, March 27, 2016

A Full Weekend of Chai Lifeline

On Friday night, we were fortunate to have Shabbat dinner with two wonderful families, the Hurwitz's and Schwartz's (both whose sons volunteer with Chai lifeline and visit Ian regularly) along with some of the other volunteers. It was wonderful to get out and do without completely worrying about Ian. The boys took Ian under their care, played hide and seek, lots of laughter came from the rooms they were hanging out in. Both families also have wonderful daughters, who Becca hung out with and got to be a kids. As for the adults, drinks were had, food was eaten and adult conversations happened. We are extremely grateful to the Hurwitz and Schwartz families for hosting us.

Sunday morning started off too early, heading down to Arundel Mills mall for the Color Vibe run. Chai Lifeline had over 100 runners participating. Like true for nothing is done small. We danced, got colored and "walked".



Thursday, March 24, 2016

Roller Coaster Week

This week has been a roller coaster of a week for us....Monday started off with a big fatty plug and an emergency trach changed needed. Followed by Monday evening with our Monday/Tuesday nurse pulling herself from the case, another one bites the dust. Tuesday, I stayed home to play nurse. The morning started off great, as you can see from the photo below.

About 20 minutes after I took this picture, things went south. Ian oxygen levels dropped to about 78, an extra treatment was needed which helped to loosen up the secretions which were hanging out....some extra cough assist needed and suctioning and about 2 hours later, he said he was feeling better. During this extra treatments, we were talking and he said that it was hard to breath and wanted to know why this was happening. I looked him in the eyes and told him that he had some extra secretions in there we were going to get out and we would get through this episode. As for why this was happening, that is always the hard question to answer...and one I don't remember how I replied to. I do know that whatever the answer I gave him, helped to calm him down and that is the most important thing. The rest of Tuesday was good, Brian came home early from work because of the episode and we got to spend a little bit of time just the 3 of us before Becca came home from school. By 8pm, I was beat. Tuesday, Wednesday and Thursday, have been painful days for Ian. We have been able to mange them with a few extra doses of his pain medicine and a few extra naps. Hoping tomorrow is a quiet, pain free day. As well as the nursing agency finding us a nurse for Monday and Tuesday, otherwise, Brian and I will be splitting the week. 

Becca has had a good week, counting down the days until Spring Break, which starts at the end of school today. She will be spending the week home, working on her Bat Mitzvah, much to her dismay. As I have told her, it is all part of the program and everyone planning for their mitzvah must go through. She has been busy with girl scouts working on her silver award with her troop. They are planning on doing something to raise awareness of disabilities. She also has been busy working with her STEM group, making race cars out of edible materials. It has been fun to watch them build the cars, race them and collect data, along with the laughing that comes along with it. All the laughter, sometimes, makes me dream about the what if's. I am just grateful for her friends that keep the laughter coming.

As for Brian and I, we are doing well. We are deep into the planning of the kids B'Nai Mitzvah which will be here before we know it. Brian has been busy with taxes, well on and off, and had a little bit of time to get out of the house. I have been busy taking care of things while he has been doing the taxes and look forward to getting out of the house in the next few weeks with some friends. We have had a little bit of time for each other, usually, late at night after the kids are in bed and the nurse has arrived...but that is just how it goes in our home. We spent the few minutes right before we fall asleep with each other.

Treasure yesterday, Dream of tomorrow, Live for today!

Sunday, March 6, 2016

Out and About With Friends

Just like any pre-teen, Ian got to go out and about with friends today...first time without mom, dad or a nurse. Thanks to Chai Lifeline, Ian got to go to the Baltimore Aquarium...he was so excited that all day, he wanted to know when it was his turn. After all, he sees Becca going out with her friends all the time. Even this morning, she got to see her going out with her big sister, Rachel. So after, many text messages back and forth trying to coordinate everything...Ian's counselor, Danny, and his big brother, Jared showed up to the house. Ready to go to the aquarium....into our van they went and off the went.

He came home all smiles, actually all 3 of them did. It was priceless to know he was just like other boys, hanging with the boys.  A huge thank you to Chai Lifeline, Danny and Jared....we love you all. Thank you for being a part of our village.