Tuesday, September 30, 2008
Amanda saw the opthamologist today, we were really worried about her strabismus, it is pretty severe, but probably because she is extremely far sighted, she will have to wear glasses, we tried some on her today, ahhhhh, she looks so cute! Doc says if she needs them, she will leave them on, I hope so. With her face shaped the way it is and that tiny nose, her glasses do not even rest on the bridge.
Something had always bothered me about Amanda's eyes, since that first picture of her on RR, I thought they looked abnormal, it was the size of her pupils that bothered me. They are huge, I thought they must be giving her meds to make her sleep (Benedryl). Still they do not constrict (get smaller in bright light) as much as they should, but I thought they were getting better.
The opthamologist said it worried him, her pupillary light response is delayed and one pupil seems to bleed into her right eye. He then asked if we knew if she had another genetic condition in addition to her Down syndrome, and we said no, we did not know. He said he thought she had Aniridia.
He wrote this to her pediatrician-verbatim:
Amanda has REALLY LARGE pupils and on my exam I am concerned that she may have a partial expression of anaridia. The raises the possibility of Wilms tumor. I would suggest that a kidney ultrasound be considered and an evaluation by a dysmorphologist.
From this website: http://www.aniridia.org/conditions/
Aniridia literally means "without iris." In most cases this is the most visible sign of the condition. However, aniridia is caused when the gene responsible for eye development - the PAX6 gene - does not function correctly. This causes the eye to stop developing too early and when the baby is born most of the eye is underdeveloped to some degree. Some aniridic eyes are more developed than others and therefore it is difficult to say exactly how aniridia will progress in an individual, however, in general people with aniridia are prone to.
Aniridia may be broadly divided into hereditary and sporadic forms. Hereditary aniridia is usually transmitted in an autosomal dominant manner (each offspring has a 50% chance of being affected), although rarer autosomal recessive forms (such as Gillespie syndrome) have also been reported. Sporadic aniridia mutations may affect the WT1 region adjacent to the AN2 aniridia region, causing a kidney cancer called nephroblastoma (Wilms tumor). These patients often also have genitourinary abnormalities and mental retardation (WAGR syndrome)
So after he told us about that, he asked if we knew about her family history, which we do not, but maybe can find out, I have to ask our agency? If it was hereditary, perhaps it is not as bad? Still, she will need karyotyping to determine if she does indeed have another syndrome. That said, I just don't feel like Amanda has Anaridia, but we will find out soon.
Kara does not need glasses, he thinks her Nystagmus is associated with her Down syndrome, and her strabismus is mild. Thank goodness for that!
Both girls go back in 6 months.
Monday, September 29, 2008
20 years ago, I had been married 10 years and was the mother of 4 sons, Fred 11, Terry 9, Eric 6, and Brian 2. My father suffered a stroke and was in the hospital, it was hard to see such a strong man ashen and unable to move, he recovered well enough to take his long walks again, but his lungs were damaged and he passed away 1 year later.
I worked full time at a health club working as a fitness instructor and weight trainer. Brian came to work with me and stayed in the daycare. The girls there loved him and took him out to movies and ice cream; he was and still is a charmer. My husband was teaching 50 miles away and he was unable to go to any of the kid’s functions. It was hard, but we survived. I was taking some classes at the community college and teaching one class for them, tuition was free.
15 years ago, I was 32, I became a mom to 5 and had my first daughter. Julia. I was president of Southern Arizona Fitness Association and Co-chairperson of City of Hopes "Workout for Hope". I ran the group fitness program and work and had a terrific staff whom were like family to me. I loved my job for the most part, my boss was difficult, but bosses often are. My husband was looking for a job in town to help more with our 5 children. The 50 mile commute was wearing on all of us, as we often had to take him to work.
10 years ago I was 38, Fred and Terry had graduated from high school, Terry had moved out pretty much after graduation, Eric was in HS, and Brian was in middle school, Julia was going into Kindergarten. I was working at another health club along with the first one, teaching 16 classes a week, all I did was teach, and it was great not getting phone calls from instructors 5 minutes before class to tell me they could not teach. I had my time and life back. Tom was working in Tucson and was finally able to go to parent teacher conferences and the kids school performances. I remember being upset that I gained 5 pounds I could not lose. :o) A whole 138 pounds, egads, I wish I weighed that now. Perimenopause was beginning, yippee!
5 years ago I was 43, Eric graduated HS in 2000, Brian was in HS. Julia was in 5th grade. I was diagnosed with breast cancer and weaning my then 2-year-old daughter Meghan so she would not be too upset when she could no longer breastfeed after my mastectomy. I went through 4 months of chemotherapy and attended my first cancer retreat. I took over a breast cancer support group after the owner left, I still run that. I had to fight to keep my job, apparently someone with cancer is a liability to businesses, so many people get fired when they are going through cancer treatments, and it is perfectly legal to do so if the employee is part time, like I was. FMLA does not apply for us. In December I was so grateful to still be alive I often had tears of gratitude in my eyes. I attended Nutcracker with Julia and sat there wiping tears away, I was also ecstatic to be able to see LOTR! Small things, everyday things, were more meaningful than they were before. My hair was one inch long.
3 years ago I was recovering for reconstructive surgery, I got a new job teaching at a new club, Eric took Meghan to school M and F. Fred got a job doing IT for a mortgage company, Terry came back home for a while. Eric was going to college and working for a resort, Brian was living in his first apartment, and going to college, Julia was in Middle School, and Meghan was going to Project Able preschool. Tom was talking about getting his masters degree. Eric and Fred were still living at home and I enjoyed having someone here all day with me (when they were not working or going to school)
One year ago we were getting ready to travel to Ukraine to adopt Kara,. Fred had lost his job at the mortgage company, First Magnus, they gave the employees one days notice, and many never got their final paycheck. Eric was put in charge of special events at his job, Terry was still working and trying to go to school. Brian was going to school and acting in many plays. Julia was a freshman in HS and Meghan was in 1st grade, home schooled through AZVA. Fred and Eric had moved out a year before that, and we were still getting used to not having them here. They did and do come home every week to watch our favorite TV show and have dinner. Life was centered on fundraising and paperwork, taking care of our girls at home, and enjoying being a family. Tom finished his master’s degree.
Today we have two new daughters, are adjusting to caring for two three year olds. Our sons are doing well, Julia is a sophomore, Meghan is in 2nd grade, and I am not working at all. I lost my teaching job after we adopted Kara, apparently I was not very reliable going off to Ukraine to adopt. I miss teaching, did it 25 years and feel like an integral part of me is missing now. Tom got a PT job , very PT, teaching at an online school. He still has his FT job. I take the girls to their appointments and home school Meghan.
Tomorrow I take Kara and Amanda to the eye doctor.
Tuesday, September 23, 2008
When you are considering adoption, one of the first things you think is "I can never afford it" thankfully there are grant foundations out there to help families realize their dreams, Gift of Adoption Fund is one of them.
From the Gift of Adoption Fundraising Page:
Amanda is a beautiful three-year-old girl who has lived her entire life in an Estonian orphanage. Amanda has Downs Syndrome. Unfortunately, many children in international orphanages who have Downs Syndrome are transferred to mental institutions at the age of four. The odds of them being adopted after that are extremely low. Knowing this, Thomas and Kris decided to act.
Toms and Kris have four grown sons and two daughters, their youngest is Meghan and she has Down syndrome. In 2007 they adopted for the first time when they welcomed Kara into their family from the Ukraine . Kara also has Down Syndrome. Knowing there are so many more children like Kara who are in need of the love and security of a family, Tom and Kris soon began a second adoption journey. Financing a second adoption so closely on the heels of the first proved to be difficult. After hosting several fundraisers, soliciting family and friends, and starting a small home business, they were still short. Because time was of the essence, they turned to Gift of Adoption for assistance. A grant from Gift of Adoption will provide the last bit of funding needed to give Amanda a forever family and allow her to be all she is meant to be.
With your help, we can fund the grant that gives Amanda a family. Any amount raised over $3,500 will be used to unite even more children with forever families. We are also excited to share that if we reach the goal of $3,500, all contributions made to this page will be matched 100% by the Ralph and Eileen Swett Foundation, doubling the impact of your contribution.
The Gift of Adoption Fund is a national 501(c) 3 organization that inspires adoptions by giving grants that put adoption in reach: in reach for the 140 million children worldwide in need of families, for qualified parents yearning to adopt, and for those of us who want to do something concrete to move a child from a dire situation into a life of hope and promise.
Gift of Adoption was co-founded in 1996 by adoptive parents Gene and Lucy Wyka. Realizing how grateful they were to be able to afford the time and cost involved in adopting and understanding the importance of giving their children a family, they began to wonder what they could do to help bring more children home to a loving family. They began a foundation in 1996 with a single focus – to put adoption in reach for more children and families.
Any U.S. citizen adopting from anywhere in the world (domestic or international) who has an approved home study from a licensed agency or social worker is eligible to apply. Financial need must be demonstrated. The number of biological children or adopted children in the home does not impact eligibility. Gift of Adoption does not consider an applicant’s marital status, gender, race, creed, national origin, or religion when reviewing applications.
For more information on Gift of Adoption, please visit http://www.blogger.com/www.giftofadoption.org.
For more information about Gift of Adoption Giving Circles and how you can create a page like this to help unite a specific child with a family, please visit www.firstgiving.org/giftofadoption.
When we decided to adopt the one thing that could have prevented our adoption was financing. Towards the end of our paper gathering for Kara’s adoption, we realized we needed additional finding for in country expenses, we applied for a grant from Gift of Adoption fund, and the day before we were leaving for Ukraine, we learned we were approved for this grant. It paid for the last two weeks in Ukraine, including our passport fees and orphanage donation.
We had sent our dossier in to Estonia to adopt Amanda the week we left for Ukraine, and when we returned, we learned Estonia approved us to adopt Amanda and in January our agency asked us to submit for a court date. We had no money left from all the fundraising we did for Kara's adoption; indeed, we had accumulated debt in excess of $3,000 and were in a panic, how in the world could we raise so much money in a short time?
We used income tax returns, economic stimulus money, did fundraisers and many friends donated money for our adoption. One very dear friend donated $1,000. In the end, we applied for, but we were turned down for a second grant with GOAF. We went to our credit union and took out a loan against our minivan to get the rest of what we needed. GOAF told us we could reapply for a grant upon our return home from Estonia, and we did. Thankfully, GOAF approved us for this post-adoption grant; it is a Godsend and with it, we can begin to pay back a portion of the $6,500 in adoption debts we still owe.
Gift of Adoption Fund came through for our family twice. We want to help them raise money for more families to adopt their children, and you can help with your very generous donations. Every time you read that family did not get a grant, realize this is because funding can only offer so many families the help they need. With more donations, more children will get the forever family they dream about every night as they sleep in their orphanage bed.
Friday, September 19, 2008
Bad thing is, I still had to cancel her dental appointment because the finalization of her paperwork and the issuance of her new insurance card cannot be completed before then. She seems to be OK with her teeth so far, I suppose a few weeks will make little difference.
I thank all who prayed for this to come to be.
Thursday, September 18, 2008
God is answering our prayers!
We humbly ask that you pray she gets approved for ALTCCS before her dental appointment next week, otherwise we have to cancel it until she has her supplemental insurance in place. The sad thing is; she will likely get approved without an MR rating (I know, I do not like them using MR either) because she is so terribly delayed. Since the school has not evaluated Amanda, she does not have the designation of cognitive delay, just speech and developmental delay, that's all...
Monday, September 15, 2008
Friday, September 5, 2008
Just having Amanda interacting with us and she being happy enough to grab my head a plant a very slobbery kiss on my lips, well, it gives me hope Amanda will be OK. It may be a long road before she comes out of her shell, and perhaps she will always want to retreat into her private world, but today, she wants love and attention.
The past week we have seen more and more life in Amanda’s eyes, and orneriness we find encouraging, no we do not generally want this in our children, but she is displaying a wider range of emotions, and that is good. She gets so happy when we pick her up and kisses us and hugs us, she is less scared of new things. She even had the gumption to sneak out the front door and make her way to the van, we found her there waiting to go bye bye, her favorite thing to do in the world.
The word for today is HOPE.