Kelly Fingerpainting

Friday, October 31, 2008

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!!

Friday, October 3, 2008

Kelly is learning to crawl

Update and Thank yous!!

The last two weeks have been very stressful in our home. We have come forward with this situation and I want to take time to thank you all for helping us so far. I want to address a few questions you have asked about our situation. I also want to tell you how far we have come and what we are still trying to do. So, bear with me and read on to find out what has happened to the Meyers.

· We have received many great donations from people all over the US, including people I have never met. This has lifted my spirits up so much and given me hope. I received donations from strangers, my uncle, my aunt and her mother, my cousin, old friends, an old boss, old students from LCU, another mom from the CP website, and many other people who just heard about our situation from the website. I am trying to email everyone individually but it will take me a few days. I am currently sharing the computer with my teenage daughter and with the other four girls around, there is not much time.

· I received one email asking why we are asking for our donations to be sent to an American address and account. That is because I still do my banking in America and it would be easier for us to get the money from my debit card here than have American friends trying to send things to Germany.

· Another friend asked if it was too late to send donations. NO, it is not too late.

· We have approached the firm that provided the nursing services last year and given them what we have collected so far. We still do not have the complete amount to pay off the bill but I am hoping this will buy us a few weeks time.

· People have asked me why we do not just get a lawyer and sue the insurance company. There are several reasons we are looking at.
1. The company found a nice little loophole and said they do not have to provide the type of care we received while I was pregnant. There are different words for different kinds of care given to sick people in the German insurance language. They told us that what we received was not what they covered in the insurance. Then they pointed to the city and told us to contact them. The city said the insurance should pay for it and we needed to work on their interpretation of the wording. This game of pointing fingers went on during the whole pregnancy.
2. We cannot bite the hand that provides for Kelly. We just checked with a social worker familiar with the law and they think that it would be very difficult to sue the insurance company. The other problem would be that if we attack the insurance company, and we later need them to approve something for Kelly, then we have bitten the hand that feeds us and may be denied for something important.
3. So, we would have to sue the city of Barsinghausen. We could do that and still may but if we do not pay this bill ASAP, it will not matter because we will lose everything anyway.

· I know many, many families in the US with children who suffer from CP or other medical conditions who have the same problems. Medical bills that the insurance will not pay. Insurance companies are evil. The difference is that the families in the US can ignore their bills for years and no one comes and takes their house or job away. I live in a foreign country where things are different. In America the other parents with CP children have had fundraisers done for them in their hometowns to raise money for bills, or new therapy or equipment that the insurance will not pay. People give them money and participate in the fundraiser and never once tell the people that they should just get a lawyer.

· So why not do a fundraiser here in Germany? Those are not common at all here. People give once a year around Christmas to big charity foundations. The social worker we are speaking with is trying to get us funding through one of these foundations. We will apply for something next week.

Please believe me that we are trying everything we possibly can to take care of this situation. I have thought about doing some type of craft and selling it on the internet. It is all a matter of timing and funding. At the moment we have done what we can for the short term and it is a matter of waiting and seeing what happens. Please keep us in your thoughts and prayers.

Janette and the Meyer Family

Friday, September 12, 2008

We Got Rabbit

We got it!!! Our very own, insurance covered, R82 Rabbit Stander. I am so excited. This is very important for the development of Kelly's hips. Standing is important because it allows Kelly to do some weight bearing through the legs, which in-turn makes the bones stronger and stimulates the development of motor coordination and head control. I do not look at this as a bad thing at all. So, Kelly has to have a stander...that is a positive instrument that will help her to develop and grow. She is able to be eye to eye with her sisters. Ours is a dynamic stander which means it has wheels on the side that Kelly can learn to push so her stander does not stay in one place, it moves with her around the room. Very cool in my book.

Wednesday, September 10, 2008

Kelly Commando Crawls!!

Yesterday was another historic day for Kelly. She commando crawled. This is very big stuff in the development line. According to the experts, if the child crawls before they are two years of age, they will most likely be able to walk!!

Tuesday, September 9, 2008

When the Bomb Dropped

When the bomb hit...

I was sitting in the NICU at the MHH (Medical School Hannover) one evening holding both of my twins at the same time. This was sometime in late December, around Christmas. It was quiet in the nursery at that time. I did not mind that the other parents were not around, as usual. I did, somewhere in my brain, take note that the other “regulars” who came at the same time as I did to hold their babies were absent but I took it as a blessing that I had a chance to sing quietly to the girls and not disturb anyone else.

This was a wonderful time for me. The girls had made it through all of the trials of the NICU. Both were breathing without oxygen. Both were eating regularly. We would be doing a 24 hour sleeping test soon that, if the girls passed, which means they had not bradycardea during this time period, they could both go home. I was truly at peace.

It was like any other evening for me, except that the other parents were missing. It was around 6pm and I had already changed both of their diapers, pulled over a rocker and lifted both of them, all by myself, with their wires and so forth, and settled down to spend a few hours alone with my new babies. At home I had left Katja, now 1 year of age, alone with Papa and Samantha, now 13. This was my private time with the girls. The only time in the day I truly had. I could not be there every minute. They had strict visiting schedules and I could not leave the one year old at home alone. So, this was our time. Our bonding time.

I was singing, “Somewhere Over the Rainbow,” and kissing both of their fuzzy heads. Kelly was on my right shoulder and Sabrina was on my left. This is how I always held them. Each had their own spot and both were always in my arms, at the same time. So, here we were, us three, singing and loving each other, when along comes the spider and sat down beside us. Oh, did I say spider, I meant doctor. Along came one of the doctors on the twins team. He was not one that I spoke to often. His English is excellent but he was not our “Main” doctor. I remember him coming in and pulling up a chair. “I need to speak to you about Kelly, Mrs. Meyer.”

“Okay, gulp, he needs to tell me something about my Kelly. Probably had to increase her medication again or some study they wanted to do with her. Where were all the nurses and parents and why on Earth was this usually busy place so quiet and peaceful? What does the spider want?”

Kelly has brain damage.

My face goes numb still, here, almost 2 years later typing this sentence. I remember the fact that I was very, very calm. I think that I squeezed Kelly a bit tighter to me and then began to question the doctor further. I told him that it could not be true, we had had a brain ultrasound 4 weeks earlier, and the doctors said it was fine. “No, it was not fine. That was just what we were all hoping. She has damage from her first few days struggling to breathe before we intubated her. It was a chance we knew we were taking.”

The rest of the discussion revolved around the fact that Kelly had PVL. Her damage, unfortunately, was bi-lateral which meant for her that unlike other children who only have the damage on one side, Kelly had it on both sides. This meant that the chances for one side of the brain to take over the functions of the other, were almost impossible. It was at this point that he started talking about a 90 percent chance that something would be wrong. It could be mild but most likely it would be serious. She would most likely have Cerebral Palsy.
When he left, I began to pray…and I do not think I have stopped praying since the bomb dropped.

Our Family is in Danger of Losing Everything

Dear Friends,

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,

Mommy to Five Girls

Thursday, September 4, 2008

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.

Tuesday, September 2, 2008

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 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.