Meeting a New Doctor...

Tomorrow, we head off to Milwaukee to meet with a new doctor.  Hopefully, this is one that we won't have to keep around for very long.  He is the surgeon who is going to do the muscle biopsy on Lil Man. 

The muscle biopsy is used to test for several diseases/disorders, including Muscular Distrophy.  As I have stated before, the doctors think there is "something else" going on other than DS.  We are at a point in our search for "something else" that we are eliminating diagnosis now.  This is pretty much the last thing that they can test for. 

 My understanding is that they take the biopsy, freeze it and prep it for slides.  Then it goes to a genetics committee, where they study it to see if/which version of MD or mito disease he has/ may have.  Because of insurance, they can only do one test, for one type of MD at a time.  There are over 200 different kinds.  So, this may be a years long process.  One that we think is more of a rule out, than in. 

What we think is REALLY going on, is a cumulative effect of all of the insults to his brain over the years.  When you look at the list, it really isn't rocket science (to my way of thinking) that this is what is going on.  The kid has had a stroke, 1000's of seizures, heart defect that caused low profusion to his brain.  He had aspirated just about every time he was fed up to the age of 7 months - to the point that he basically drown and had to be put on the vent over a dozen times.  Until his first open heart surgery, his O2 levels would drop into the 30's several times a day.  That alone surely caused some damage.  Then there is the nutrition thing - does he not absorb nutrients because of brain damage or is his brain not getting enough nutrients because of malabsorption? 

He is a mystery wrapped in a riddle.  I am seriously considering getting a T-shirt for him, with "We have never seen this before" printed on it to wear to doctor's appointments.  LOL! 

So, the next big hurdle is making sure that they can get enough of a biopsy to be useful, and to not have to go back and do it again.  The poor kid has NO muscle mass.  They will probably have to biopsy multiple places instead of just one.  I just hope they don't have to cut on both arms and legs to get what they need.

When this surgery is scheduled, we also have to co-ordinate a bronchoscopy (look down his trachea into his lungs), EGD (look down his esophogus into his stomach), colonoscopy - 'nuff said, and the dentist.  There will also be a test, while he is sedated, called an EMG.  It is a test where they put probes under the skin, into the muscles, and run electrical current through the probes to see how/if the nerves in his muscles respond.  He has never had one of these before, so I am interested to see exactly what the results are.

He seems to be able to move his arms and legs, just maybe not in the same ways we do.  At this point, if it gets the job done, we are happy with it. 

So, we are ready for a very long day tomorrow.  We will have to leave the house by about 4 a.m. to make an 11 a.m. appointment.  Hope everyone has a great day.

One more thing, if you could say some prayers today for our buddy Jaxson.  He has been admitted to the hospital with something similar to RSV and pneumonia.

Hugs to all!

Steph 

Let's talk food.....

I have a confession...well, a few....For about 15 years, I have been a part of a community - mostly on-line - of really great folks.  For me, it started with gardening....and reading.  I am a reader.  I research everything I am interested in.  So, eventually I made it to this group.  There are several out there in the www world.  Just like regular communities, we have people from all different religions, races, ages, political backgrounds, and socio-economic groups.  The difference is, we have all made an agreement that we can discuss things without attacking, and can agree to disagree in some cases.  The friends I have made there are ones that I am sure I will have for the rest of my life - even if we never get to meet IRL.  The reason this is a "confession" is because these are people that many would classify as the "Tinfoil Hat" group...  It is scary how many of the wacked out theories that people on the group are shot down for, have recently come true!  :) 

So what does this have to do with anything?

Did you see Oprah on Wednesday?  Personally, I like Oprah. But it always cracks me up how by the time she does a show on a topic, it is something that the people in our group have been talking about for YEARS!  The show was about food, specifically our diets and how food is grown, processed, etc in America. You should go check it out here.

So you want the cliff notes version?  I'll try.  Basically, there are several issues with food, here in America:
#1.  We are one of the wealthiest nations in the world, with one of the highest obesity rates, the highest number of people going hungry, and the highest level of governmental interference (read manipulation) in our food supply. 
#2. Our children and future generations are paying the price for our disconnect with where and how our food gets to out table.
#3. In, I think, the 1960's or 70's, Americans spent 18% of their income on food and about 7% on healthcare.  Today, Americans spend 9% of their incomes on food and about 20% on healthcare!!!! 

The long and the short of it is, that we have gotten away from growing and cooking our own food.  partially because of government subsidies of corn, etc, we eat more and more and more processed foods every year.  Our animals are doing the same.  It is cheaper to go to McDonalds and buy a couple of double cheeseburgers than it is to go to the grocery and buy the ingredients to make a salad.  Next time you go grocery shopping, just look down the aisles of the store.  How many of the things in the grocery store are things that your great grandparents would recognize as food?

I know that most of you out there are busy, busy , busy.  This isn't something that I want you to think I am browbeating you in to.  Quite honestly, between big Chris and myself, if we took to eating the way we really should be Little Debbies and the Diet Coke brand would probably collapse.  LOL!  But, we can all do better.  You all have a say in how food is handled in America by using your purchasing power. 

This is something that you have to decide for yourself and your family.  For us, we are going to start slow and ease into things....for some they may go whole hog, so to speak, and go completely Vegan/organic, etc.  For many, I assume, they will fall somewhere in between.  It comes down to a lifestyle and what you are willing to accept or ready to do for you and your children.

I will probably be doing some more posts on some easy gardening ideas.  Please leave a comment if there is something in particular you would like to see.  I am going to list some of my favorite books, magazines, and website to get you started.  Click on the titles to take you to the links.  Enjoy!

I'll start with a list of books/authors.  Just click on the title of the book to take you to a link to read more about it:

Michael Pollan:
*He is really one of the most vocal people out there, and one of the most down to earth.  He has a real passion for food and where & how it is raised/processed.  He explains things in plain English without terrifying you.

In Defense of Food: An Eaters Manifesto:  A good explination of how low-fat has made us fat.  If you only read one book, this is it..

The Omnivore's Delimma: A Natural History of Four Meals:  Do you know where your corn dog has been?

Joel Salatin:
**I absolutely LOVE Joel Salatin!  He practices what he preaches - no questions.  While most of his books look like they are geared toward farmers or those wanting to farm, they really explain the ins and outs of industrial farming, the restrictions placed on small family farmers who want to sell locally, and why you should care.  I also love his theories about a child's place in a family business and a parent's responsibilites to teach their children how to take on responsiblity.

Holy Cows and Hog Heaven: The Food Buyer's Guide to Farm Friendly Food:  "has one overriding objective: encourage every food buyer to embrace the notion that menus are a conscious decision, creating the next generation's world one bite at a time.

Everything I Want to do is Illegal: War Stories From the Local Food Front:  Excellent explainations of why it is so hard to find local food suppliers and why you want to.

Family Friendly Farm:  If nothing else, read this book for a great example on how to raise your children in a way that you can work with them later.  LOL!  Seriously, this is a great book on the dynamics of family in a "family" business - even if that business is regular day to day life!

You Can Farm:  You CAN do it!

There are aslo several other books of his - just look him up on Amazon or the library and see if they interest you.  :)

Barbara Kingsolver:
*You might recognize her books.  Great writer.

Animal, Vegetable, Miracle: A Year of Food Life:   I don't know if I am brave enough to take on this experiment, but it is really great to read about it.  The recipes in this book are worth the price!  SOOOO Yummy!

The Poisonwood Bible:  Has nothing to do with any of this - it is just one of my all time favorite books!  it is about a Missionary family in Africa.

Magazines:

Backwoods Home Magazine:  Be sure to check out all of the articles.  There is a forum, and Jackie Clay's blog is a must see.  She is THE GURU when it comes to gardening, cooking, canning, and raising animals.  Some of the political issues may be turn-offs for some, but just ignore what you don't agree with.  The gardening and recipes are worth the visit.

Back Home Magazine:   Not as "flashy" as BWH, but another great magazine with all kinds of crafts, gardening tips, recipes, etc.

Mother Earth News:  Hardcore homesteaders and back to the landers believe that MEN has "sold-out"  That may be, but I still enjoy the articles, again, about the gardening, recipes, crafts, history, etc.  The website is a wealth of information.  I do believe there is a searchable database of all of their acticles and projects from the 1970's on. 

Countryside Magazine:  Not as political, but very similar to BWH (the first mag listed).  Pretty much written by its subscribers.  These are people who are walking the walk.  :)  If nothing else, stop by and read the article by our good friend Suzy Lowry Geno on running a farm store!  Great job Suzy!

Grit: Yep - This one is still around.  Has a lot of history in it as well.

Hobby Farm and Hobby Farm Home:  Another glossy magazine, but has great acticles on gardening and cooking - especially Hobby Farm Home.

Websites:

In addition to the ones above, here are some websites to check out in your spare time...

Slow Food International

Slow Food U.S.A

Eatwild

Eating Fresh Publications

Chef's Collaborative

Enjoy!  Hope you find something you like!

Hugs!

Steph

It Begins....

We have to travel to Chicago tomorrow for Lil Man to start therapy, so of course there has to be a Winter Weather Advisory out! Ha!Ha!  We wouldn't have it any other way.  Really, the snow doesn't bother me so much.  It is the wind.

This will be the first session of tag team therapy.  We will see what they come up with for our assignments for the month.  We are scheduled to go up every 4 to 6 weeks, have PT, OT, and Speech therapy and get "assignments" to work on until the next appointment.  He has changed some since the eval at the beginning of November, so I expect they will be getting to know him again tomorrow.  We all have a general idea of where we are going and what we want.

Since I don't have much to say about anything going on around here, I thought I would put in some info that I have been collecting from various sources including our newletters from the Heart of Illinois Down Syndrom Association (HOISDA) and Down Syndrome Network of Champaign County.

The Current State of Health Care For People With Disabilities:

The National Council on Disability (NCD) recently issued a report calling for immediate health care reform for people with disabilites.  The report includes a roadmap for eliminating the pervasive barriers to health care for people with disabilites.  The complete repot can be downloaded in PDF at:

http://www.ncd.gov/newsroom/publications/2009/pdf/HealthCare.pdf

What Can You Do?

This is the centerpiece of the Campaign for Disability Employment, which seeks to promote positive employment outcomes for people with disabilites.  Go to: http://www.whatyoucandocampaign.org/ 

Case for Incusion:

The United Cerebral Palsy (UCP) has resleased its annual Case for Inclusion that benchmarks states' actual performance in improving lives for individuals with intellectual and developmental disabilites.  Among the findings, there remain 169 large institutions (more than 16 beds) housing 36,175 Americans.  For more information go to:

http://www.nextsteps.peatc.org/newsmanager/news_article.cgi?news_id=17&no_stats_record=1


Just in time for the annual R-word campaign, Campaign to Change attitudes About Disabilites:

http://www.creaturecomforts.org/

Scoop Group Online Resource:

Disability Scoop offers and online discussion group where parents, self-advocates, and friends of people with disabilites can ask for advice, advocate for their causes and share ideas.  http://www.disabilityscoop.com/forum/  

They also have a video which explains the IEP process:  http://www.disabilityscoop.com/2009/16/video-iep-english/3672 

I have more that I will list later.  Have a great day!

Hugs!

Steph

Thanks Gamma & Papa!

A couple of months ago, I came across a really neat chair that I thought would be great for homeschooling.  It is durable, wipe-able, and sturdy.  It adjusts, reclines, and can turn from a high chair into a seperate chair and desk.  It also has a 5 point harness, and lots of padding.  :)

It helps that during his PT/OT eval a few months ago, the therapists suggested that we get a chair that would allow him to bend his knees and place his feet on the floor better.  Up to now, we had been using a chair like this: 

It is a GREAT feeding chair.  We have only been able to find them on e-bay and in Special Needs Therapy catalogs since Lil Man was a baby and we initially decided not to buy it at Wal-mart for $14.    There are pictures of him in his in older posts about his birthday & Christmas.  (While looking for a picture tonight, I noted there are more places bringing it back.  If you are looking for a good chair for therapy that is lightweight and portable and wipes down well - this is it.  We even take it to the hospital with us!)

So, come Christmas time, Gamma and Papa came through and bought Lil Man his own school desk and chair.  This is the first time we have been able to get it together and get him in it.  He seems to like it pretty well!  It is on the straight up setting, but can recline back pretty far.  To turn into a high chair, the table turns over and the chair attaches to it.  It has a really nice pommel in the middle too (between his legs so that he doesn't come flying out).  That is good, because unfortunately, the straps are a little short.  I guess they don't plan on children this big still needing to be strapped in.  We rigged it up so that the straps kind of work.  Otherwise, we LOVE this chair!  Thanks Gamma & Papa!

How to Help Part II

After reading some comments today on some other groups, I feel compelled to make another statement here.  Many are talking about the President's request to give money not stuff.  That is great, but right now there are people out there who don't have two dimes to rub together, but they are clearing out their homes that are being forclosed on, they can surely donate "Stuff" that has accumulated. 


Even the many of the "poor" in America do not realize how good they have it.  Frankly, with our situation, medical bills, and the fact that I can't work so I can take care of Lil Man, we are considered at or below the poverty line.  The fact is, we have medical, clean water, clothes on our backs and our families.  That is more than can be said for many in Haiti right now.....honestly, it is more than could be said about many in Haiti BEFORE the earthquake.  It was just that nobody paid any attention.


Don't get me wrong, America has issues they need to deal with, but nothing like what is going on down there.  A full 80% of the population are below the poverty level - way below.  These are people who are immensly thankful for the 12X12 shack put together by scrap  in the middle of a garbage dump! 


There are an estimated 40,000 homeless children in Haiti - not homeless with the rest of their families - abandoned, orphaned, turned out and on their own to survive.  As a bonus, Haiti is one of the largest centers for child trafficers, child slave traders, and child sex trafficing rings.  With so many more children who are going to be orphaned, fighting these sick people off will/should be a priority.


As somebody who used to work for some of these non-profits, the way this works is that when you donate money, they buy what is needed and get it where it needs to be.  When there is such an overwhelming response, as has happened with Haiti, there will probably be more money than is needed for the initial "crisis" level supplies.  The overage will go back in the general pot.  Also, long story-short, the more the non-profits are able to send, the less the Government has to co-ordinate.     


At some point, the need for aluminum space blankets and bottled water will have been met and the bigger organizations will , for the most part, pull out to deal with other crisis other places.(I am thinking Red Cross as an example).  Once things start coming back on line - i.e. water filtation points, tent cities, etc., the people of Haiti will be left to clean up and rebuild as best they can ....mostly on their own.  For a people, who collectively had almost nothing before the quake, rebuilding with less than nothing is going to be next to impossible without outside help.  This doesn't even take into account the people who are so traumatized that they can't function - PTSD.


So, that leaves the need for "stuff".  How many people do you think would be grateful for that old set of pots & pans, dishes, those skinny jeans that you are probably never going to get in to, your old camping equipment, books, etc.   The very best places to give those things to are church groups with established missions in Haiti.  I know the Catholic churchs, the Baptist church, and many others have missions that they continually send people to.  THESE are the places that are going to get those things where they need to be.  There is no way, anybody can give enough money to buy the things people need to start over.


As for medical supplies, Doctors without Borders, World Vision, and other groups WILL need those items and get them where they need to be.  They do have established, and permanent bases in Haiti.


While this is a HUGE tragedy for the people of Haiti and those who have family and friends there, this could be a giant learning opportunity for your family.  Without going in to graphic detail & scaring your kids, this disaster could be used as an opportunity for lessons in charity, compassion, empathy, geography, history, geology, and the biggest IMHO needs vs. wants.  


Helping the people of Haiti to get back on their feet again is going to be a marathon, not a sprint.  Anything you can do to help ease the suffering, I can guarantee you, is GREATLY appreciated by the people of Haiti and their families.  Please help in any way you feel compelled, be it monitarily or donation in kind.  Thanks!

How you can help....

As we posted before, we have some good friends who live and have family in Haiti.  We know our friend survived her work building collapsing around her.  However, her family has not fared as well.  We know that part of the family has perished as they were sitting down for dinner and their house collapsed around them.  Some who were not hurt are afraid to go back into their houses for fear of collapse, and many are still missing.  The devastation is almost absolute.  At the very least, we are asking that you send your prayers out for those who are living in Haiti, the doctors and rescue personnel there and on their way, the injured and the missing.  We just found out that most neighborhoods are coming together every night at 10:30 p.m EST for a neightborhood prayer service.  Please, take a moment to do the same.

If you are so inclined to do more, there are many organizations who are taking donations of money, clothes, medical supplies,  and time.  Before you donate, always check out the organization with the Federal Bureau of Investigations or the Better Business Bureau to make sure it is legitimate.  Unfortunately, there are people out there who wait for the chance to take advantage...

If you are local to us (East Central Illinois/West Central Indiana), we have the names of several churches taking donations of items who have permanent missionary bases in Haiti.  If you worry about your donation making it to where it was intended, these people will make sure it gets there.  Please e-mail me at stephani.wyatt@att.net  or you can find me on Facebook  (Stephanie Wyatt) and I will pass on the information. 

To all of our friends who have medically involved children and family members, if you are like us, you have a little stockpile of medical supplies that you either don't use anymore, were the wrong size or models and the companies will not take them back once they are in your home.  This goes for formula as well.  This is the time to clean out those items that are no longer needed.  As long as they are still factory sealed - maybe not full cases or boxes - but the individual item still sealed, here is your chance.  If you cannot find a national organization to take those items, try a local church with a missionary.  They are usually more than happy to take those items.  Their regulations are more relaxed, and I have it from a reliable source that when times are tough, places like Doctors Without Borders get those items from where ever they can find them.  If you have any medical equipment, old wheelchairs, walkers, afo's, pulse ox machines, feeding pumps, suction machines, nebulizers, etc  they can be used as well.

While not my favorite organization, I have added a button over to the side to donate to the American Red Cross for Haiti.  You can also dial 90999 on any cell phone and text "Haiti".  That will send a $10 donation to the ARC Haiti fund.

Following are more organizations to donate money, time, etc. Click on the BOLD titles for links to the organizations:
CATHOLIC RELIEF SERVICES: Address and mail checks to: The Archdiocese of Detroit CRS Relief Efforts (4th Floor) 1234 Washington Blvd., Detroit 48226; or call 800-736-3467. ** This is for the Detroit area.  I am sure they would take donations from anywhere, but you might want to check your local Catholic Church to see if they have a branch of this service there.


AMERICAN RED CROSS: Go to the Web site by clicking the link at the beginning of this paragraph and find out how to donate and other ways to help, or call 800-REDCROSS.


THE HAITI FOUNDATION AGAINST POVERTY: Nonprofit organization in Grand Rapids that funds an elementary school in Port-au-Prince seeks donations, food and medical supplies to send to Haiti.


REGISTERED NURSE RESPONSE NETWORK: The nation’s largest organization of registered nurses has activated its nationwide disaster relief program to recruit nurse volunteers to provide assistance in Haiti. To sign up, click the link at the beginning of this paragraph.


AMERICARES: 88 Hamilton Avenue, Stamford, Conn. 06902 or call 800-486-4357.

OXFAM AMERICA: 226 Causeway St., 5th Floor, Boston, MA 02114-2206 or call 800-776-9326.

THE SALVATION ARMY: 615 Slaters Lane, P.O. Box 269, Alexandria, VA 22313.

SAVE THE CHILDREN: Haiti Earthquake Children in Emergency Fund, 54 Wilton Road, Westport, Conn. 06880, Or call 800-728-3843.

WORLD VISION: Haiti Earthquake Relief, P.O. Box 9716, Federal Way, Wash. 98063-9716 or call 888-511-6548.

DOCTORS WITHOUT BORDERS USA: 333 7th Avenue, 2nd Floor, New York, NY 10001-5004 or call 888-392-0392.

INTERNATIONAL ORTHODOX CHRISTIAN CHARITIES: P.O. Box 630225, Baltimore, Md. 21263-0225. Or call 877-803-4622.

U.S. FUND FOR UNICEF: 125 Maiden Lane, New York, N.Y. 10038 or call 800-367-5437.

CURRCLICK:   Go here to donate in small amounts - $5 or $10.  Currclick will match donations.

MERCY CORPS: Dept. W, P.O. Box 2669, Portland, Ore., 97208-2669 or call 888-256-1900.  




Most of these links were found at the Detroit Free Press Newspaper.      

For those who can, thank you in advance for your time and donations.  For anybody else, prayers are never turned away.  Thank you!


Hugs!

Stephanie

In the Beginning....

***  I want to pre-empt our post.  I am asking you all to pray for the people of Haiti.  We have friends there - one who narrowly escaped with her life.  She was on the 3rd floor of her office building when it collapsed.  She escaped by sliding down the rubble.  She knows of at least two co-workers who have died.  We also have friends there doing missionary work - mostly with children with heart defects.  Their hotel has collapsed, the hospital has collapsed, they are trying to make their way to the airport, as they were all seperated.  We have other friends who we think are in the mountains - hopefully not as affected. 

If you have family there, you can get information by calling 1-888-407-4747.

If you would like to donate to the relief effort, Wyclif Jean has started a relief group  http://www.yele.org/  If you go there and can't connect, keep trying.  It has been overwhelmed.

Thank you *****


In the beginning of your journey with your child, everything is new and overwhelming.  This is doubly so when you get some sort of diagnosis that you weren't expecting.  How you react to your babies' diagnosis depends largely on your personality, faith, to some extent your self esteem, and many more factors. 

I met a friend on Facebook the other day.  A Mom who has WAY more general experience than I, but is at the beginning of her journey with her beautiful little girl, who happens to have Down syndrome.  As I was typing up a couple of e-mails to her about our experiences and what we do to keep our heads on straight, I thought these would make some good blog topics.  Don't run away yet.  These ideas are not just for those who have children with DS.  On the contrary, take our ideas and run with them if you have any medically involved child, or just many typical children to keep track of!  :) 

When our son was born, we had no idea what we were getting in to.  I had enough of a medical background to be dangerous, so I knew a little of what was going on.  But not nearly enough.  We are still tyring to perfect our system, but I hope this will give you a starting point.  This is going to seem like a lot of information, but if you get it together little by little and keep it in one place - you won't have to think about trying to gather all of this stuff when things are going crazy around you. 

One other note:  In our case, we travel A LOT, for medical/therapy appointments.  Our closest doctors are 200 miles away.  I cannot tell you how many times we have gone for an appointment and were told that we were going to be admitted, or there was an opening for some test the next day.  When we are admitted, it is very rare that we are in the hospital less than a week.  Our longest stay was a little over 6 months.  Life doesn't stop on the outside just because you are in the hospital.  This will hopefully make it a little easier to stay in control of your household and medical situations at the same time.

Our first suggestion is that you invest in something like this:  It is a Real Simple File Tote bag.  Target carries them, but use what ever you feel comfortable carrying.  They have lots of types of these out there.

Next, you are going to want to gather a notebook, pen/pencil, an address book, and a calendar.  The notebook and pen/pencil are obvious.  I would suggest that you get an actual address book as opposed to using your phone.  The only reason is that phones get stolen, the batteries dies, or it's broken, or dropped in the toilet. Usually when you need them the most.  Use what you are comfortable with - either a commercial address book or a computer generated one.  Just make sure that it is easy to add to and there is enough room to put notes.   Originally, I was going to list all of the things that should be included in the address book.  It took up too much room.  :)  I am going to include some handy forms at the end of this post.  I will also include the Important Numbers List there.

I know a calendar should be a no brainer.  However, I wanted to take a minute to talk about yours.  We have found that by using a typical one year planner/calendar, we end up toting around the previous year's calendar pages as well.  You will find you refer back to them more than you think.  Both for your own reference and while you are in the doctor's office.  Many times docs will try to buy a little time by saying they have to look up something or other.  You can sometimes see them deflate as you pull out your handy-dandy three year calendar and rattle off the last 4 times your child had a particular test & maybe the results.  LOL! 

Seriously, having the information right at hand will do two things: #1.  again save time, since you know we get precious little when we talk to the docs. #2. it will show that you are involved in your child's care.  Many people say they are involved and can't tell you what medication their child takes.  Health care personnel see too many parents who are going through the motions.  They get a little lax in their treatment sometimes, and this will show them that you aren't taking anything lightly.  It unnerves many doctors until they figure out that you are not trying to "catch" then at something, just trying to save time and get the most out of your appointment time.  The other thing is that, many times, the only constant is the parent.  You will be taken MUCH more serious if you whip out the information needed to treat your child correctly.  I guess what I am saying is that it will elevate you in the eyes of most doctors. You will be amazed how much more they consider you part of the team when you are informed.  Well, there will be some blank calendars in the links section at the end of the post.  We also really like these 3 and 5 year calendars from Miles Kimball.  They are pretty cheap too! 

We try to keep one section of the file for each speciality.  Hopefully, you don't get to the point we are - we have run out of room!  Anyway, some specialities you probably won't have anything to put in your section.  You can figure that out as you go.  Some, like therapy, you will probably have a lot.  There is no way you can get a copy of every result of every test run on your child.  You wouldn't be able to haul your tote around.  The things you want to keep track of will probably vary a little from ours. 

We ask for actual copies of reports for big tests: i.e. MRI's, CT's, ECHO's, swallow studies, hearing tests, etc.  For us, we keep track of certain blood levels, but we don't need to have a report for EVERY blood test we get.  However, if labs are ordered I always try to write down exactly what test was ordered, by which doc (we see a couple a day) and if we can what time they were drawn and by whom.  I call the nurse and get actual numbers for the things we are tracking and writing them in the calendar.  the others I only make a note of if they are too low or high.   When a doctor orders an imaging test (i.e. xray), I ask for copies.  Well, really I only ask for copies of MRI's and CT's.  All others, I ask for the reports.  We also ask for copies of the tests used for therapy evaluations and a copy of the actual evaluation and resulting plan of care.  For some, this may be your IEP. 

Since we are currently getting medical care and/or therapy services at 5 different hospitals, only 2 of which are affliated, we also carry blank release forms.  Once a year, I make sure to fill out a release form at each hospital for all of our other doctors.  There should be no excuses when trying to coordinate treatment, especially if it is a critical situation.  Medical Records will usually give you as many blanks as you need.  Carry your blanks in your file tote.  File your copy of your completed release forms in your coordinating sections in your tote.  If you mail them in, do it certified mail with signature required.  Staple the confirmation to the release in case somebody gives you guff about not getting it.  If you hand it in in person, at least note the name of the person you gave it to, the date, and time.  Try to have them initial or sign it. 

In addition to any other forms that you want in the links section, you will want to type up a list of all off your doctors/hospitals with their names, addresses, phone, fax numbers along with  pharmacy& medical suppliers.  Hopefully, these won't be changing very often.  Run off about 20 copies and keep in your file tote.  I know that is on just about every new patient form we fill out.  I just staple it to the back now.  I also do this for medications, and listing surgeries and hospitalizations. 

I will do another post on this later, but as the parent, YOU should be the expert on your child and their medical issues.  This means that you should (if you don't already) research your child's diagnosis as much as possible.  Try to stick with reputable sites like National Institutes of Health,  American Medical Association, or American Heart Association.  One thing I like to do is to go to the professional associations for a particular specialty, say American Association of Clinical Endocrinologists,  and check out their actual treatment guidelines and protocals for treating certain conditions.  Read them and highlight areas that you are concerned about.  Keep these in your file.  I can guarantee you, if you bring out treatment protocals, people will take notice.  This doesn't mean don't research other options - sometimes a natural or homeopathic course it what is best for you.  Just have your research to back it up.

Depending on your situation, you may need to keep copies of Custody Agreements, power of attorny, Advanced Directives (DNR orders), or Organ Donation Forms.  If you are in a situation where you have one, make sure you carry a copy of any restraining orders and make sure that security in the hospital is aware.

A few extras that we keep in our file tote:  Maps to all of our hospitals (Map Quest, etc.), maps to and from restaurants, church, hotels, grocery, laundry, and Wal-Mart or Target close to the hospital.  We get a small phone book (6X9) from our phone company (Yellowbook - I think).  It is perfect to put in there.  I keep a small business card holder, a highlighter, black and blue pens, insurance cards, small stapler, staples, remover, stamps, envelopes, small scissors, white out tape, calculator, restaurant menus from places that will deliver to the hospital or hotel, a re-loadable phone card.  Yes, we have a cell phone, but sometimes there are calls that you need to make that run up your bill.  You can get a 200 minute phone card for around $20 or a 500 min. one for $35 at Wal-mart.  We also keep a re-loadable, pre-paid visa card in there.  We try to keep about $150 on it for emergencies.  When we activated it, you get the option to order another.  We did and keep it at home.  This way, if we need more money, somebody can go get it and load more on it for us. 

Some hospitals, especially in Chicago, charge for parking in their garages.  You can usually buy a discount pass from the hospital.  We keep that in there as well.  Some restaurants or other shops have punch cards.  If you find one you like close to a hospital that you know you are going to be spending a lot of time at, pick it up and keep it in there.  Everntually you will earn your free meal ,or discount, or what ever.

One thing I forgot to mention about the calendars, since we go to several larger cities for treatment, we are always looking for stuff to do, preferably for free.  LOL!  Luckily, in all of the cities that we go to (Peoria and Chicago, IL and Milwaukee, WI),  you can google the city and find lots of free things.  For example, in Chicago, the Platetarium, Shedd Aquarium, and several museums have days once week where they are free!  You can go to almost all of the exhibits.  I get that info and write it on the calendar as soon as they have the schedules up for the year.  That way, we don't have to look for something to do if we are stuck in town overnight......and it is a bonus field trip day, since we homeschool!  :)

We keep our tote in the van all of the time and just update the forms as needed.  Hopefully, this will give you a way to not feel so overwhelmed with all of the "stuff" that you have to keep track of.  Now for those links I promised you, follow the link below and it will ask for a password.  The password is forms   all small letters.   This will take you to a folder with several pdf files.  If you do not have Adobe reader, you will need to download it.  It is free.  Pick and choose what you need.  The two handbook files and some similar forms in different configurations.  Enjoy!

http://www.4shared.com/dir/28069145/1630b81d/health_binder_forms.html


Hugs!

Steph

Catching Up....

Hello All! Once again, I offer an apology to all of our bloggy friends...this is a super busy time of year for us. Lil Man's birthday is 6 days before Christmas.  Between trying to schedule all of the holiday get togethers, get our shopping done, avoid H1N1 and other winter nasties, and doctor's vistis - we get a little overwhelmed.  Oh yeah, we are trying to get our house together to put it up for sale too.  :) 

Big Chris and I were also still trying to recover from whatever it was that we caught in October.  If I didn't know any better, I would have thought we had mono.  That is what it felt like.  We are really just now getting back to normal - well, ok - normal for us.

Meanwhile, Lil Man has had a few episodes of crud - but nothing too overwhelming.  I really believe they were due to teething.  Yes, he is 6.  Overnight, all four 6 year molars popped in.  All of his teeth have come in in opposite order.  His first teeth were his molars, and not until he was 20 months old.  He is missing several baby teeth.  Some are visible on x-ray, they just haven't come in yet.  So, now they are really trying to come up.  Unfortunately, Lil Man takes after me in that department.  The teeth act like they are going to come in and then go back down - over and over.  This turns him in to a permanent drool factory - or "Slobber Butt" as is his new nickname.

Birthday and Christmas were pretty laid back.  We were so busy getting things together and trying to recover, we didn't even put up a tree this year.  I feel really bad, but I don't think Lil Man missed it.  The one unfortunate thing about having a birthday that close to Christmas is that you have to REALLY think ahead for what you think he will be doing or wearing for the rest of the year.  We get little things for him throughout the year, but this is the big deal as far as wardrobe, etc.  Luckily, I have always bought ahead and usually do the most of my purchases at the end of the season sales (love getting those turtlenecks and t-shirts for $2!).  While Lil Man has grown in length consistently, he has not gained weight.  He has been able to wear most of his things for over a year.  This was the third year for his coat - we finally gave up the ghost.  :)  So, this is also the time when we clean out all of the drawers, etc.  Switch out the old for the new.  Seriously, for a child who hardly ever leaves the house - he is a clothes hog!  Honestly, most of his wardrobe consists of PJ's.  We LOVE these even in the summer with the a/c on.  They wear like iron and wash up well.  He can go through 3 or more sets a day, depending on what his GI issues are for the day.

Below are some photos from birthday and Christmas.  Will post more soon.  :)

Birthday cake:

He finally "got" opening presents on about the last two!

This picture of my Mom and nephew cracks me up.  They both look scared of whatever it is that my nephew received.  LOL!