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