Movin On

Will I ever get over it? Kelly and Sabrina are now 2.5 years old and I still think back and question why? I ask myself over and over, why did Kelly have to have brain damage? Could I have done something differently? Did the doctors make the wrong decisions? Kelly was born normal but at 29 weeks and 5 days, her lungs were not ready. They told us the oxygen numbers were borderline and that she was struggling but they felt like she would be okay and they felt that entubating her at that point would be more dangerous. I think back wish that I had known that at that point, Kelly would develop CP. I really think that maybe I did not totally understand the doctors. They were speaking a different language after all. They did try to speak English to me but I have learned that it is not always perfect, no matter how fluent they are. There are things missing in the translation. Anyway, I cannot stop looking back and thinking, "why and what if." Kelly was born normal and without CP but because of struggles with breathing, no brain bleeding or anything else, she had brain damage.
Now, I know it could have been much worse, I have read stories, met mothers and other children, but still...my Kelly was an average baby in the beginning. I was on my back in the hospital for 10 weeks. She was only 10 weeks early and her twin is perfectly normal.
My oldest daughter says I should stop looking back and look to the future and she is totally right. The problem is that as a mother, I am so frustrated because there are so many others out there that have twins and they come out normal. I cannot help to think I could have done something more. The language barrier was a big one. The main doctors spoke English but the nurses did not. I wonder often if I was asking for the right things. Anyway, like daughter one says, move on.
So, now I am looking for cures. Looking for therapy. Looking for miracles. One thing I am really interested in is stem cells. Did you know they are in breast milk? I am also a breastfeeding Mommy. We have decided to pump extra milk and give it to Kelly in a bottle, once a day. What can it hurt? I know the research out there is limited but if I have to be a brain cow for my daughter, I will do it. I do not want to look back in 10 years time and say, "Oh, I wish I had known about the stem cells in the breast milk when I could have given it to Kelly!"
I am also going to look into alternative therapies, new research and so on. I have got to insure this baby has a chance at the fullest life she can have.
Still, I know I am moving on, but, I wish there was a time machine to take me back and help me make it another day or two or week or two...maybe then we would be typical and average twins.

Kelly Fingerpaints

This is an older post that I am just now posting. Kelly has done so many new things in the last 6 months. This one is really cool. We sat her in her chair and had her fingerpaint. Now, those of you with typical developing kids might think, "Whooptee woo!" but that is because you have no idea what you are talking about.
With Kelly, she has good use of her hands but she has a tendency to grab what is in front of her and keep her arms up tight. For her to be able to fingerpaint, she has to have the ability to open her hands up (which she does)and push her arms out and move her hands around and not eat the paper. Now she does this. We did the first fingerpainting in November. I kept the paper. Here are some cute pictures of my little Picasso. Look over at the sidebar.

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

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

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.

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!!