April 28, 2013. Twenty-four years ago, I married a wonderful man who loves me unconditionally. He would have to, or we most likely wouldn’t still be married. Admittedly, I am not the easiest person to live with. But, he has loved me through all the trials and struggles we’ve been through during the past 24 years, and today as we sit watching “Lady and the Tramp” and eating popcorn with our newest addition, I celebrate him, and the last 24 years.
Now… Cara and the update you’ve all been waiting for. Our lives have been filled with doctors since bringing her home. We knew from her medical file that she had Cystic Fibrosis when we committed to adopt her. Cystic fibrosis (CF) is the most common, fatal genetic disease in the United States. CF causes the body to produce thick, sticky mucus that clogs the lungs, leads to lung infection, and blocks the pancreas, which stops digestive enzymes from reaching the small intestine where they are needed to digest food. Because Cara was not receiving any treatment for her CF in country, she was not digesting the food she ate, and she remained very small. Her bone age is 3 ½ years old, and she will be 6 ½ in May.
We were told she did not have CF in her lungs, and knowing very little about the disease we were very encouraged. However, after meeting with the Cystic Fibrosis Team at Sacred Heart Hospital in Spokane earlier this month, we now know what the disease really is. Currently, Cara has no mucus in her lungs. This is a very good sign, but it doesn’t mean she only has intestinal CF as we were led to believe. It only means the CF has not yet gone into her lungs. This was devastating news for us, but news we are coping with. The good news is that since she started taking the right digestive enzymes she is growing! She grew ¾ of an inch in 3 weeks! Because she is now absorbing the nutrients in her food, she isn’t eating as much, and can tell me she’s full. These are all positive results of the enzyme treatment.
Her appointment with the CF Team was a very long 4 hours. We were given so much information it was hard to keep up with it. They sent us home with books and pamphlets, drug information, DVD’s, a new prescription for the enzymes (generic and half the cost of the name brand) a prescription for an inhaler in the event she gets a cold or bronchitis, and a prescription for “The Vest.” http://www.thevest.com I had never seen anything like it before. Its purpose is to replace the hand pounding therapy that all CF patients should receive. The pounding helps to break up the mucus in their lungs and help clear their airways. The vest attaches to a machine that inflates and does the compressions instead. I call it her miracle machine! Getting her started on this therapy before she has issues with her lungs can prolong her life significantly. When I was a little girl, children born with CF rarely lived to see their 5th birthday. Since the creation of the vest, people with CF have had their life expectancy increase by more than 40%. The respiratory therapist that came to set it up and show us how to use it, said that it was a good possibility that Cara may never have lung trouble or very little lung trouble by starting this therapy before she does. We hook her up to her machine twice a day for 20 minutes at a time. She isn’t very fond of it, but I am truly grateful for Mickey Mouse Clubhouse keeping her entertained while she does her treatments.
Our next step is to get another blood test to determine which genome of CF she has. The Transmembrane Regulator (CFTR) gene – causes CF. The gene was discovered in 1989. Since then, more than 900 mutations of this single gene have been identified. Determining which mutation she has will help her doctors determine the best form of treatment for her. So much progress has been made since 1989, that there is now a drug that will put one of these 900 mutations in remission. The odds are 900 to 1 that Cara has this particular form of CF, but we can certainly hope and pray! I dread taking her in for another blood test, but it is a necessary evil, and one she will most likely have to have many more times.
Cara has also been to see the dentist. I wish the news were better, but unfortunately, her back teeth are in bad shape. She has had two abscesses in two of her back molars, which went untreated in Bulgaria. Both of those teeth are now dead and will need to come out. Spacers will have to be placed so the other teeth don’t move forward and take up the space needed for her permanent molars to come in. She has several cavities in the remaining molars that will need to be filled, and her teeth need to be cleaned. She has the beginnings of periodontal disease, but she should be fine after getting all this work done, and then seeing a dentist every 6 months. All of this will be done under general anesthetic at our local hospital. Estimate for dental care, $2500. This does not include the hospital fee.
We met with the “team” at our local school two weeks ago. I was not impressed. The English learning language “specialist” is insisting on placing her in the 1st grade in the fall. I want to place her in Kindergarten. Their reasoning is that she needs full immersion into the English language in order to pick it up faster. The fact that she has global delays right now, and is developmentally at about 4 ½ years old doesn’t matter to them. She is also not ready for a full day of school. I believe she will eventually catch up, but it is going to take her a couple of years. Their other argument was “We don’t want her to start menstruating in the 4th grade!” WHAT? ARE YOU SERIOUS???? And shortly after that statement, “It is better to hold her back in 1st grade than to start her in Kindergarten.” But, wait… doesn’t that mean she may still menstruate in 4th grade? None of it made sense, and they were unwilling to listen to my feelings about Cara’s readiness for not only 1st grade, but a full day of school. As a child coming from an orphanage, just learning about a family, and still unsure of what a mama and daddy really are, and what it means to her to belong to a family, she needs time to adapt, time to bond, time to understand what all this change really means. I asked them for developmental testing, they refused, saying she doesn’t have enough language to be tested. This is baloney. They test non-verbal kids all the time. So, we are back to the plan B, home school.
I am amazed at how quickly she is suddenly picking up English. I would say she is speaking 90% English with a little Bulgarian thrown in when she doesn’t have an English word for what she wants to say. She has become quite adept at getting her point across, and making sure we understand what she wants or needs. She refers to herself in 3rd person, which is pretty cute. She doesn’t have an understanding of “you”, “I”, “me”, yet. Her sentences are short, like a toddler that is just learning language. But she is learning so quickly, I’m amazed.
Backing up a bit, Cara’s first Easter at home was such fun! We colored eggs on Saturday, which she really enjoyed. She had seen a Disney show with a blue bunny, so all she had talked about for two weeks was a blue bunny. I told her she should ask the Easter bunny, and of course got a very confused look. She had no idea what an American Easter was about. We had gone to church Friday night and did our best to explain the true meaning of Easter to her, but didn’t expect any understanding at this point. Sunday morning when she got up and found her Easter basket, she was thrilled to find a blue bunny, as well as CANDY! She shared some of her candy with Daniel and Alexandra and was just amazed at all the goodies in that basket. We had friends coming for dinner and an egg hunt in the afternoon, but because she had never hunted for eggs, we took her outside to have her own little egg hunt and get an idea of what it was all about. Alexandra had to show her the first few, but she caught on very quickly and started looking for them on her own. When our friends arrived later and we hid more eggs, she was quite a pro at finding them!
Some Easter video to share: http://www.youtube.com/edit?ns=1&video_id=vjlhZ-mIzWs,
I remember when I was younger with a young family. I thought how wonderful it was to view the world through the eyes of my children. I didn’t know how little I really saw. When you raise a child from infancy, they see so much when they’re small and non-verbal, that you really don’t see and hear their amazement at what they are seeing. Adopting an older child, as an older parent is truly an amazing experience. There is/was so much Cara never experienced. She had seen nothing of the world, and very little beyond the walls of the orphanage she lived in for 6 years. Something as simple as the stars and the moon are so thrilling for her. The first time she saw a sky full of stars, her face lit up and she tried to count them. She talked about it for days. Unfortunately, cloudy skies blocked the view for a couple more weeks, but on the next clear night, she was so amazed and thrilled all over again! Flowers blooming are an absolute wonder to her. The things we take for granted every day, are so exciting for her. She is thrilled every morning if there is no rain and the sun is shining because she knows we can play outside. Watching her eyes light up, and her face break into a huge grin, is one of my biggest joys of the day!