Kelly is a Superstar!

Well, Kelly has really been surprising us lately. She just keeps getting better and better. The coolest thing she did last week is she began to sing! She did this earlier, when she was a baby, she would sing in her crib. Then she started having the brain seizures with the West Syndrome (Infantile Spasms) and the difficulty with Cerebral Palsy. For a while there I was truly worried we would be mentally handicapped as well as physically. I am not worried about that at all now. Kelly is very verbal and now she sings. The thing is she sang three words strung together. That is an amazing feat. She had been singing one word and jumping in on songs we sing together. For instance, when we are singing "Let's Go Fly a Kite" from Mary Poppins, Kelly would jump in and sing "UP!". I thought that was pretty amazing in itself. But last Thursday, Kelly sang three words together, "I know you." We were cuddling and singing the song from Sleeping Beauty "I know you, I've waltzed with you once upon a dream..." and Kelly looks at me and sings in a perfect tone "I know you." It was sort of spooky because her twin, Sabrina, has been going around the house for over a month now singing the very same words. And Kelly's voice at this point sounded exactly like Sabrina's coming out of her mouth. Weird twin thing...anyway, she has taken off further from there and sings it all the time and says to me "Hand,hand". That means she wants me to take her hand and dance with her. She cannot dance on her own yet but we put her in her Pony Gaittrainer and then I hold her hand and she sings "I know you!" and we dance.
Words cannot express the emotions I am feeling at the moment. My little girl is getting the chance to act and be like a typical developing child. She wants to be a princess and her body and the equipment we have, is allowing her to reach a higher capacity than we ever though possible. Our prayers and wishes are coming true!!
Janette

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

Stress with Dealing

The stress of dealing with a child who has special needs can be a whopper. We are currently feeling the results of this stress. The insurance does not pay for everything we need. We do not get all of the equipment completely paid for, the therapy, the extra help, the glasses, the special vitamins...the list can go on and on. We are in a big crack at the moment facing the fact we pay out 450dollars more each month that we earn. So far we have covered that by robbing Peter to pay Paul and maxing out credit cards. We are now over our heads and I honestly see now way out.
I thought about doing a fundraiser to help pay for our expenses, but I am in Germany and they do not do very many of those things like they did in the great US of A. If I were on my own turf I would approach my church and ask them to help me plan a fundraiser. Here you still pay taxes to the church and the church does not go out of its way to help you. Believe me, we have asked for help when I was bedridden and pregnant and had small children to take care of. We had to pay for the nursing help ourselves and now owe over 5000 dollars backwards for that one.
Not sure what to do. Please give advice if you have it.
Lonely and scared at 4 am in the morning.

In the Beginning

In the beginning, I was pregnant with twin baby girls. The news shocked and delighted both the family here in Germany and at home in the USA. Twins!! As the pregnancy moved along things were going well. I was happy but compared to the other pregnancies I had experienced, everything about this pregnancy was more extreme. Due to the higher level of hormones, I had stronger morning sickness, stronger cravings, stronger emotions...you name it. Around week 19, we developed a problem. I started to have contractions. They rushed me to the Medical School in Hannover (MHH) where I was booked into a lovely room to spend the rest of my pregnancy. I left at home a baby girl, Katja, who was only 10 months old herself. I was instructed to keep my butt up high and stay on my back. They did not do any surgical tightening of the cervix because I had an infection that would have made it worse. I reclined with my bottom in the air for about 10 weeks. Then the team of doctors decided on November 10, 2006 to deliver Kelly and Sabrina by C-Section. We were on week 29, day 5.
The girls were both delivered healthy with great APGAR scores. There was nothing wrong with either of them at that point, except they were preemies. Then the trouble began for Kelly. Both girls had underdeveloped lungs and were given oxygen through a mask. The doctor in charge of the girls suggested that it was better that both girls fight and learn to breathe, rather than risking the chance of damaging their fragile lungs with intubation. Sabrina was doing okay with the whole oxygen mask thing but Kelly was struggling. Her lungs filled with fluid and her oxygen saturation numbers were very dangerous for two days. This is when she experienced brain damage. On day three they went ahead and intubated her. She had fought well and after giving her another shot to help develop her lungs further, they put her on the machine. It was, however, to late to avoid brain damage. I look back and wonder, if I knew what it would be like today for Kelly, would I have made a different choice. We felt like we were making the right decision. The doctor said it was what he would have done if it were his child. Was it the right choice? I will never know.
What I do know is that Kelly experienced bi-lateral brain damage and something we call PVL. I now know that this brain damage is responsible for the new term in our family life, Cerebral Palsy. I also know that after watching Kelly over the last 21 months, that Cerebral Palsy will not beat her. Kelly will beat Cerebral Palsy. No, there is no cure. No, it will not go away. But Kelly is developing. Beating all the doctor's expectations. She is fighting to overcome her Spastic Quad. CP every day. We will keep fighting and we will beat this CP thing.
That is why I started this separate blog. I want a journal for Kelly alone. I invite you to read along. I invite you to cry with us, cheer with us, laugh with us and please pray with us.
Welcome.