Our Family is in Danger of Losing Everything

Dear Friends,

WE NEED HELP!
This is an emergency posting asking for help. This past year, while I was pregnant with baby Sarah, several things occurred that have now put us in a real state of jeopardy.
These things were:
1. I became pregnant with Sarah in August
2. I began to bleed after lifting Kelly and taking her to a doctor appointment
3. I was put on bedrest for the remainder of the pregnancy
4. I was told not to pick up my children, do housework, or I would lose the baby

So, because Katja was not even 2 and the twins not even a year old, we had to have in-house care. The doctor reassured us this was something that the insurance had to pay. Kelly, who was the sickest of the twins, was not developing and becoming mobile and needed nursing care and I needed in-home assistance while Michael was at work.

Then in September of last year, Kelly was diagnosed with West Syndrome and I stayed with her in the hospital for a week while they tried to get her seizures under control. The nursing staff then took on more hours. Again, we had a prescription at this point from my Gynaecologist and the Pediatrician stating we were a family in need and that we required care for the 3 children under 2 years of age. Michael and I were sure things would work out.

The insurance DID NOT PAY. They simply told us that it was the responsibility of the city. The city then pointed their fingers back at the insurance…and this dance went on for 7 months. During this time we had to keep someone working in the house and caring for Kelly so the nursing company we hired kept billing us.

In January we got the first diagnosis of Cerebral Palsy for Kelly and then we started to battle the insurance for therapy, and medical equipment. Do not get me wrong, they do cover the bare basics for that. What shocks me about this the most is that they knew from this diagnosis that we needed help in the house with the children but no one helped.

We contacted the local churches and they had no program to help people in need. The nurses were even calling people because they knew we were getting further in debt and that the insurance was not paying.

To make the point even worse, I also have a back problem and will need to find someone to help carry the children until it is repaired or grows stronger. On advice from the doctor, we found an AuPair to help us. Again, the insurance does not cover this cost either. Even though Kelly is non-mobile and requires more care than the other children.

Now, we have to pay off this debt, or we lose everything. I am an American but I live in Germany and therefore I have to abide by the German laws. There are laws in Germany regarding debt. My husband works for the German government in the IRS and he is not allowed by law to be in debt. If we do not pay off this debt, Michael will lose his job.

So, you find us at a precarious point in our lives. We have a brand new baby and face the possibility of losing first our car, then our house and on top of everything, Michaels job.

We have tried to pursue this matter and force the insurance or the city to pay but it has been to no avail. Now we have to try to save everything before we are sitting on the street with five children.

As I write this I am afraid of stating the truth that it has really come to this point. I am in a country far away from family and friends. I am doing the only thing I can do at this point and that is to ask for your help. We are asking for donations to pay off this debt. We owe over $8,000 backwards for this period. Michael told me yesterday that we have to have $4000 by next week. He has been keeping this from me while I was pregnant and now while the baby is small, hoping that he would find a way. Now we have to ask for help.

My father’s address in Texas is listed on the side of this post. We are taking checks payable to Janette Meyer. We are checking with the bank at the moment to see if we can get an account started in the name of Kelly. I will also be setting up a Paypal button that you can donate with a credit card. I am speaking with someone today about how to make this a tax-deductible contribution for you. We will find out soon how to write you a receipt for your tax records.

I cannot explain how afraid I am at the moment. I am trying to act positive and upbeat around my children so that they do not know what is going on. They feel something is not right.

Even a small donation would help us. Please share this post with your friends, co-workers and any you know. We really need help.

Thank you,

Janette
Mommy to Five Girls

New Blog for Kelly

I have started a new blog just for Kelly and her CP. It is titled CP Can't beat me. You can find a link to it on the left of this page.
I did this because many people want to read about all of my daughters on here and I thought Kelly and her condition, stuggles and triumphs needed their very own page.
I just posted a post about the financial dilema we find ourselves in now because of several bills the insurance would not pay. I apologize in advance that it is a bit depressing but it is 4 in the morning here and I cannot sleep because of the stress.
Anyway, check out Kelly's brand new blog!

Kelly sits up alone!!!

Well, yesterday, Saturday August 30, 2008, was a really big historic day for us. Kelly sat alone...unassisted. I was so tickled pink! She was sitting
beside me with me holding on to her and I just happened to let go and
she stayed up!! And I looked at her and could not believe it. And then
I yelled at the AuPair to look and my oldest daughter and we all just
stared in disbelief. It was the coolest thing ever. She used her hand
to prop her and support her and she sat there alone for about a
minute. That is a good start, don't ya think!! WHOOO HOOO
For those of you that do not understand what a monumental issue this is, let me explain a bit more. Kelly has spastic quadrapelegic Cerebral Palsy. She has high tone in her arms and legs and low tone in her head, neck and trunk. This means it was an accomplishment when she started holding her head up back in January at 14 months of age. I was really not sure if she would ever have trunk control but that muscle has been developing slowly over the last half year. We were loaned a Rabbit StanderR82 and I think that helped her too. Her doctor feels like she is doing so well that she does not need a vest or corset to help her with her trunk muscles. Many kids with CP that have low tone in their trunk must wear a support system like this and many do not sit up unassisted. I am hoping this is the beginning of big things for Kelly.
When we put baby Sarah on the floor with her, she gets really excited and tries to crawl toward her. She is moving the legs correctly but has not gotten the arms going right yet. That is why the trunk strength is also so important. She needs that body strength to get herself propelled forward. We are thrilled. I am now actually feeling hopeful and believing that she may some day walk!! All the therapy, tears, prayers and pain are paying off.
Way to go Kelly Jelly Belly!!!

Wow, What a Sister

Kelly has been blessed in the fact that so far she has only had problems with her muscles and movements. There are so many children out there and so many different problems and faces. I just pray we all learn a little bit of patience, love, and acceptance for them all.

Morning Mama

I am not a morning person. Ask my dad and ask my husband. My dad knew me the first part of my life and now my husband gets to enjoy my company during the remainder, but that is not possible mornings. So, normally, I try to go to bed early in order to get 8 hours of sleep. With 8 hours, I am super! Now, however, with the birth of baby number five, I am not getting 8 hours of sleep. I am starting to sleep for 4 hours at a stretch and that can do wonders but it is still not enough and my daytime hours are absolutely nuts here. There is always someone needing me, touching me, talking to me, interrupting the other person talking to me to talk to me, following me into the bathroom, needing to be stretched, needing to be taught to potty on the potty, needing to learn to read, needing to breastfeed, needing to be reassured they are a good man, needing to be placed in their stander, needing to be played with, needing to be placed in their pony, needing to be placed on their tummy for “tummy-time”, needing to be cheered and encouraged when doing stressful Vojta therapy…and the list goes on. That can be in a one our period mind you. I am not kidding one single bit, my life is nuts.
So, we get to this blogging idea of mine. I want to keep up with the 5 girls is enough (yes, I know the grammar sounds off, it is supposed to be a joke like 8 is enough) website and devote it to my family and especially our battle against the all encompassing, evil Cerebral Palsy and give hope and inspiration to others. I also want to do that with my other blog 5 girls on a budget for the same reasons except to highlight our journey on an extremely tight budget and again give inspiration and ideas to others. But how on earth can I possibly sit down and read emails or write a blog for goodness sake when I do not even eat regularly or shower at this point?? I know it will get a bit better because baby Sarah will eventually sleep through the night. But either way, I have come to an adult decision. I have to get up before the family does if I want to have one moment of peace to think and dream and write. I know this is not a new idea, many women have done it and I have read about it and heard about it for years, but I had no idea how true it was going to be in my life. For the sake of my sanity, I need to have alone time so that I am strong enough to give all the love and things to my family that each of the 6 individual people need. I thought about staying up late, after the kids are in bed, but then my husband is awake and he wants his husband time. That is fair, he needs me too. But I need me too. So, I begin my journey as an early riser. Well, at least I did it today. We will see about tomorrow. I think it is going to be absolutely the only way that I can keep my sanity, or at least a semblance of my sanity!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

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 change in the flight plan. They've landed in Holland and there you must stay.

The important thing 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 must 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 than 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.

You know you have a child with special needs when...

by Carol AnCel
* You compare ER's instead of grocery stores.
* You compare your child's oxygen saturations.
* You view toys as "therapy".
* You don't take a new day for granted.
* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
* The clothes your infant wore last fall still fit her this fall.
* Everything is an educational opportunity instead of just having plain old fun.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
* You also don't mind if your child goes through the house tooting a tin whistle.
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
* You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
* Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else
will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* When potty training is complete, you take out a full page public notice in the Washington Post.
* When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old just started walking last week.
* Her medical file is several inches thick and growing.
* You have a new belief.....that angels live with us on earth.

Bad Words

Momma always said, "If you don't have something nice to say, don't say anything at all." I guess I should just keep my mouth shut all of the time then. I think Cerebral Palsy is a bad word... a very bad word. And all the little words that come with it...Spastic, Quadrapeligic, AFO, Bathchair, Activity Chair, Walker, Gaittrainer, Stander, Vest, Speech Therapy, Physical Therapy, Occupational Therapy, Play Therapy, Handicapped accessable Van, Handicapped Accessable Bathroom, Creepster Crawler, corrected vision, possible wheelchair...
We had our followup appointment last week (see Great Appointment post). I was being really upbeat when I posted the results. But let me be honest. It stinks. You know, Kelly started having her epilepsy problem last summer. That is when her development started to slow down. At the time the therapists and doctors said that she was probably just behind due to prematurity, then she was further behind because of the West Syndrome. All of these things, I could fix. I could change. Give her a pill, take her to therapy, say a prayer. I could do just what a parent is intended to do...take care of and fix the boo boo. Now, after this last appointment, they are confirming once again what they have hinted at since January, that Kelly has Cerebral Palsy. I know, I know that it does not go away. I guess that some small part of my soul just hoped and prayed that when we went in this time to see the doctor, he would say, "Wow, Golly Gee (in German of course), I made a mistake. Kelly is just fine, she is just still developmentally behind. She does not have this bad thing called Cerebral Palsy that has no cure. She will not be disabled and picked on by other humans. She will be a perfectly normal twin to her sister Sabrina. She will walk and she will run and she will play hide and seek and she will win." But, the doctor did not say that. And I am having to deal with the fact he will never say that. Kelly cannot be rid of Cerebral Palsy (bad word, bad, bad word) ever.
Now, she had made improvements. But I cannot cure my baby. A pill and a bandaid will not heal this wound. That makes me feel I have failed as a Mom.
I was in that hospital bed for 10 weeks, on my back, with my butt high up in the air, speaking a foreign language, watching crappy television, separated from my still baby daughter Katja (10 mos old at the time). Why, could it not have turned out okay?
Believe me, I am grateful that we do not have as many problems as other preemature children. I know we are lucky. I just want Kelly to be completely lucky. I want her to be completely normal. I do not want to have to add the word Cerebral Palsy to my daily vocabulary. It has taken over our lives. I live and breathe handicapped equipment and therapy appointments. Those are the only band-aids I have. Well, that is why they call blogging therapy. I got that out of my system. I do not feel better but at least I got that out in the open. I have to go and get the children up from their nap. Duty calls!!

Kelly in NF Walker

Great Appointments

Hi everyone!

I am really behind in the bloggin thing. I want to catch everyone up and I promise to try and do it this weekend. Just a quick note about medical updates…

Kelly and I had a big two days here with two very big appointments.

First we had our EEG because Kelly has West Syndrome (Infantile Spasms) and spoke to the doctors in a meeting afterwards. Good news!! We had our second normal EEG. We are excited. We will stay on the medication (which for us has been okay with the side effects anyway, nothing too serious) and have another EEG in 6 months. The Neurologist said that Kellys head measurement is normal and her weight and size are normal. Funny though that she is so much skinnier than her twin. Does that make Sabrina a chubby giant?

Then we had the appointment with the folks that coordinate all the handicapped services. Their professionals came in and evaluated Kelly and said that she is doing super. Her arms are much stiffer than her legs but she is not stiff all of the time and when she relaxes she does super things with her hands. They feel like we can work with this and that she can learn to overcome it. She turned for the doctor from her back almost all the way to her tummy (he had some neat toys). He was very impressed by her speaking and she really showed off for him and used a couple words I had not heard her say before. Of course these are in a very soft voice due to the low tone trunk but we are excited anyway. We are now scheduled to see the Speech Therapists.

I will get more specific in a later post but to keep it short…We will go back and test drive the equipment I want. They agreed with me that the equipment I want is a good choice. Thank you to all the CP Moms for discussing your equipment with me. I did my research from that and went in with a darn powerpoint presentation!!!

Again, I will discuss our equipment and therapy ideas tomorrow or this weekend. I am off to bed.

God bless,

Janette

Mom to Kelly and the other fabulous 4.

Rollin, rollin, rollin

Well, I was kind of bummed about Kelly and her turning progress. She turned once on March 31st and then did not do it again. I began to think that maybe it was just an accident. The last few days though Kelly has been a rolling girl. Now she is not heading across the floor yet but she rolled Thursday for both therapists, one in the morning and another in the afternoon, and yesterday she rolled three times in a row for her Oma. I did not see the Oma event but I wish I had. Three times in a row...that is almost like actual motion and movement. Go Kelly!! So, maybe we have some hope that Kelly will move ahead. Someone said that if they begin to roll, there is a big chance that they will crawl. We will all be so excited here if Kelly crawls.
Other things that are rolling around in our house include me. I am still as big as a condo and rollin around or waddlin around waiting for baby girl number 5. Tomorrow is Samantha's big confirmation day and party. That is a special thing here in Germany for both Protestants and Catholics. There is a formal church service and then the family throws a party for guests afterwards. Did I mention I am still pregnant?? I am doing this 9 months pregnant!! Oh well, I have nice friends here and they will help me out. On a side note, I wonder what people will think about and how they will react to Kelly. It is strange but some people do not know what to say or do or how to act around her. They pay a bunch of attention to Sabrina and Katja but are very careful around Kelly. I think they are worried they will hurt her or offend us. Anyway, I hope they will learn that she is just a happy baby and loves to have attention just like her sisters. She is not fragile, just a bit stiff in her muscle tone but loves to be picked up and talked to. I am also going to have to get used to people and understanding that it is okay for them to be uncomfortable.
Wish us luck tomorrow!!

First Turn

My Kelly turned this morning from her back to her stomach for the first time!! I am not sure everyone can understand how excited I am about this except other people that have CP kids. Kelly is Spastic, Quad CP with high tone in her legs and arms and low tone in her trunk and head. She was born with her twin Sabrina (no problems) at 29 weeks and 5 days on November 10, 2006. So that would make her adjusted age around 14 months. Anywho, her twin started walking last weekend. I felt guilty because I was happy for Sabrina but at the same time sad for Kelly.
Kelly has made great progress. She can hold her head up for most of the day. She does not like being on her tummy so she has been able to flip to her back for a few months. It is not a very fluid motion at all because her legs are so stiff she basically flops over.
The ability to turn from her back to her stomach takes much more muscle control and is much more difficult. There was a big chance she might never learn to do it. But she did it, she did it!! She only did it once but it was a definite turn to her stomach to reach something, me. Her older sister, Katja age 2, was so excited that she spent the next few minutes flipping Kelly over and over and saying "Turn Kelly".
I called her proud Papa at work to tell him and Grandpa Taylor in Texas. I am going to call the therapists this evening. I plan to spend time with her this afternoon working on the skill further.
Yeah for Kelly.

Beginnings

Well, I have decided to take the Blogging plung. Since this last pregnancy has made me a part-time bed rest prisoner, I have had more than enough computer time to read other blogs and discover how valuable they can be. I decided that this might be a good thing to do for many reasons which include keeping up with family and friends in America and reaching out to others who are dealing with a child who has cerebral palsy.
Those of you that know me personally, know that I lost my mom a few days after daughter number two, Katja, was born in 2005. It was a real shock to us and really difficult for me to deal with. I think I have missed her even more profoundly since I gave birth 10 weeks prematurely to my twin daughters, Kelly and Sabrina in 2006. My mom had suffered a few serious health problems in her last few years but she always kept a positive and cheery outlook. She had a saying, "You gotta play the hand you were dealt." I have been thinking about her and about the cards I have been dealt a bunch over the last year with the twins. Kelly was finally given the lable of CP in December. That was one heck of a card to be dealt. I am learning how to play this game of poker every day. Kelly is much like my mom was. She is always positive, good natured and a happy baby. My mom would have been so proud. I am glad I have the opportunity to share her and my other lovely daughters with you on this blog.