Sorry we do not seem to have time lately to post on this site very often. Seems like there is always something that seems to distract me from writing.
Our latest big news is that we have selected a teacher for Sophia’s new preschool class. This is kind of hard to explain, but I will try. Sophia has already been attending half-day preschool in the district’s special education program called self-contained. We have recently moved her from the morning class to the afternoon class because she had really “outgrown” the morning class.
I had a meeting a couple of weeks ago with Sophia’s school principal to discuss our short- and long-term education goals. Michael and I have really liked the school she has been attending. We have toured other schools in the district and we were extremely unhappy with all the other schools. But at the school she is currently attending, the staff are super motivated, children are always smiling and eager to learn and everyone is very qualified to do their jobs. The test scores in her currently school (which is a Montessori style school) are higher than those of almost all the other schools in the district. So the plan is she is going to enter the “general education” all day/all week Montessori program. After the transition Sophia would still have the same therapists (that we really like) so there would be no period of adjustment with any new therapists. She would still have an IEP (individual education plan) but she would not be in a special education classroom any longer. We have a meeting this friday to “iron out” all the details and an orientation immediately following. Michael and I are really excited for Sophia.
We had a nice Thanksgiving with our families. We hope you all did too. This weekend we are going to a holiday party at Sophia’s private therapy based preschool (we go for three hours every other friday morning). Santa is going to be there and Sophia is really excited to see him. I will be sure to post how it goes and have Michael put up some pictures with St. Nick.
Sophia has finally learned how to peddle her trike. Wow, we have been working on this for about a year now. Of course she loves to ride her trike. It is kind of cold here in Kansas City so we let her ride it around the house. Michael and I really proud of her and she is pretty happy for herself. This is obvious by the huge smile she has while racing around the house on her tricycle. So cute.
I had a lengthy meeting with Sophia’s school principal this week about transitioning her into the all day/all week montessori program at the school she is currently attending. Sophia goes to a public school in a pretty nice part of the city about 15 minutes from our house. The special education class she is in now is only four days a week in the afternoons. This school has about a three year waiting list and is practically impossible to get into. The principal, who was just lovely, said that she would be happy to open a spot for Sophia in any of the 8 pre-k classrooms at the school. This is pretty exciting for our family. Michael and I have been trying to learn about the montessori program and decide if it is the right type of schooling for Sophia. We still have a lot to learn, but so far we are thinking mostly positive. We have an appointment in February with Sophia’s developmental doctor and are anxious to hear his advice. Next week on Michael’s day off we are planning to doing some observation. I must admit we are a little nervous to see if our “baby chick” can fly out of the nest with out the safety net of special education, half days and smaller class size. But we feel we owe it to her to give her this chance to rise to this challenge. Everyone at her school believes that she will do fine. I will of course report all progress on this blog toward reaching this goal.
Amazingly Sophia has been healthy the past two weeks (knock on wood 1000 times). She is still doing two 40 minute breathing treatments a day to keep her lungs and sinuses healthy.
We have plans to go to Michael’s sisters house for the upcoming holiday. She lives pretty close and has a darling little boy that Sophia loves to play with. Then sunday after Thanksgiving we are going out to my parents house to do it all over again with family. Michael, Sophia and I are looking forward to spending some quality time with the people we love the most. These people have been such a huge source of support in the difficult times of our lives. It is always nice to see then when everything is going well and Sophia is healthy.
As always, thanks for checking in with us and we hope you all have a super happy Thanksgiving.
We met Alicia, an adult CHD survivor, at our CHD Families support group meeting this evening. She is planning to go to Washington to meet with lawmakers regarding heart defect awareness and research funding. Please help her reach her modest goal for travel expenses. There are details at http://ajlobbying.blogspot.com.
The procedure Tuesday went quickly and with out any problems. The doctor said that the tube that was to be replaced in Sophia’s right ear was turned sideways which left an indention. The doctor was able to fill the hole/indention with a patch made of some kind of paper to keep the new tube in place. This caused Sophia’s ear to bleed and hurt pretty bad for a few days following the procedure.
Sophia also started to get a cold the night before the procedure, but luckily this was not a factor in getting the tubes when we came in Tuesday morning. By Wednesday Sophia had a super bad runny nose and cough. I was not able to send her to school all week because she just felt to yucky from her ears hurting and a bad cold. I took her to her doctor yesterday and got her on an antibiotic for another ear infection and sinus infection. Today she seems better.
We are not really planning anything exciting for the weekend. I think we may go to the library tomorrow to let Sophia play. She is really missing being around other kids and has been asking to go to school. Everybody please cross your fingers she will be well enough to go back to school on Monday. Tuesday is her picture day at school. I am kind of excited about this and have pre-ordered some pictures of her and one of her class. I just hope somebody wipes her snotty nose first! Ha Ha.
Looks like we are getting a new president and new ear tubes on Tuesday this week. We have pre-op tomorrow morning at 9:00, which I am sure will last until the afternoon. They are supposed to tell me during the appointment what time the procedure will be on Tuesday. In the past they have always scheduled these kinds of procedures in the morning. I have been telling Sophia that she is going to the hospital to get little tubes put in her ears (this is actually the second time we have done this). She understands that the tubes will help her and says she is not scared of the doctors. I believe her. This kid is really “seasoned” when it comes to being in the hospital. The tough part for her is the IV’s. She is such a hard stick and it always seems like the nurses consider her a personal challenge instead of a real child when it comes to getting in a good IV. It is so hard for me to watch and have to support Sophia when they dig in her veins. Michael and I have a rule, if you can’t get it in two or three tries then your are out. Also we do not allow them to “dig” for very long when her veins roll (and they usually do). So cross your fingers everybody this part of the day will go smoothly. I am assuming the procedure will be in the morning and we will be discharged in the late afternoon or early evening.
So halloween was really fun. Sophia loved trick or treating and this was her first time to really do it. After every house she said, “I wanna do it again!” We just went a few blocks around our own neighborhood and boy did she get a ton of candy. It was a really sweet and memorable family evening and I can not remember the last time I was that genuinely happy.
I have always tried to avoid politics on this blog as I didn’t believe it should be a venue for an issue that is traditionally divisive. However, with so much at stake in this presidential election I thought it important to voice my opinion.
For our family, and I am guessing for many of yours as well, healthcare is a central issue in almost every aspect of our lives. Given the differences on this issue in the two presidential campaign’s plans, I have to consider it a primary issue in the election. Our family has met with representatives from Barack Obama’s campaign and discussed our thoughts regarding his healthcare plan. We have reviewed John McCain’s plan. And we have carefully parsed the discussion on healthcare from the debates.
There are several issues we have with the McCain plan. They are outlined below, in no particular order.
The radical deregulation of health insurance. McCain wrote in an actuarial trade publication last month, “Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade with banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation.” In other words, the same blind commitment to free market excess that caused are banking system to collapse would be applied to healthcare.
John McCain doesn’t believe that healthcare is a right. He instead contends it is a responsibility. What does this really mean? Living healthy is expensive in a time when farmer’s are encouraged to grow industrial/feed grains in lieu of fruits and vegetables and are often penalized from receiving subsidies if they do. As a result, hydrogenated fats and empty calories are artificially inexpensive and rampant in low cost foods. And real food is out of reach for most low-income people. Also being healthy requires regular preventive care. This is difficult for those who are uninsured or cannot afford to see healthcare professionals. In my opinion stressing responsibility in healthcare places the burdens and costs of our healthcare system disproportionately on those amongst us that are the least fortunate. By stressing responsibility in healthcare, McCain is saying the least fortunate of us need to learn to take care of themselves. I believe strongly in personal responsibility. But when it is used by a politician to justify a prosperous nation ignoring the needs of its citizens, it feels odious.
The language of the McCain campaign regarding patients seems to ignore those amongst us with the most difficult and chronic health conditions. He continually stresses the Wal-Martization of healthcare. I am sure efficient walk-in clinics in our nation’s retailers would help deal with the cold and flu patients in need of decongestants or antibiotics. But should I take Sophia to Wal-mart for an echocardiogram?
McCain has no specific healthcare plan for children. In 2007 he voted against legislation that would have covered an additional 3.5 million children. The Children’s Defense Fund gave McCain the lowest score of anyone in the Senate in 2007. We have had the misfortune of spending time in ER waiting rooms recently and there is always at least 12-20 kids waiting, sometimes for as long as 6-8 hours, to be seen for common (non-emergency) ailments just because they have no insurance and have nowhere else to go. McCain’s plan seems to ignore this.
John McCain has no specific plan to prevent those with preexisting conditions from being denied health insurance coverage. Though he believes preexisting conditions should be covered. He has no specific plan for dealing with the problem and favors high-risk pools that would raise the premiums of those with such conditions.
Though I like very much the healthcare plan Obama has presented. My views can be summed up by this article in Forbes. The main reason I am won over by Obama’s plan is philosophical. Obama stated in the second of the presidential debates that he believes healthcare is a right. It is shameful that a healthcare system as advanced as ours, in a country as prosperous as ours, let’s so many of it’s citizens suffer and die from treatable conditions. I think Obama understands this. He has seen directly the conflicts between insurance companies and the needs of patients and understands that people should come before profits.
I will be voting for Barack Obama for president on November 4th. Author Michael Chabon summed it up best in his Washington Post article endorsing Obama.
To support Obama, we must permit ourselves to feel hope, to acknowledge the possibility that we can aspire as a nation to be more than merely secure or predominant. We must allow ourselves to believe in Obama, not blindly or unquestioningly as we might believe in some demagogue or figurehead but as we believe in the comfort we take in our families, in the pleasure of good company, in the blessings of peace and liberty, in any thing that requires us to put our trust in the best part of ourselves and others. That kind of belief is a revolutionary act. It holds the power, in time, to overturn and repair all the damage that our fear has driven us to inflict on ourselves and the world.
And when we all wake up on Nov. 5, 2008, to find that we have made Barack Obama the president of the United States, the world is already going to feel, to all of us, a little different, a little truer to its, and our, better nature. It is part of the world’s nature and of our own to break, ruin and destroy; but it is also our nature and the world’s to find ways to mend what has been broken. We can do that. Come on. Don’t be afraid.
I hope you will forgive me this little foray into politics and I assure you I will not make it a habit.
I wanted to let you all know that Sophia had a fun and memorable birthday party. We had the party at a local park near our house. The weather was so crazy. It was VERY windy. It really made it difficult to keep anything in place, there for all the plates, silverware and napkins blew away. I could not anchor any of the table clothes to the picnic tables. We had a good turn out but did have about 15 no shows, likely due to the high winds. Sophia had a WONDERFUL time playing with all her family and friends and ate her share of cake.
Yesterday was her actual birthday and I brought up cup cakes to her class. Her teachers had a little party for her. They put a candle in her cupcake, sang happy birthday and she got to pick out a little gift from the birthday trunk. She was in such a happy mood and all big smiles yesterday at school. I took some pictures of the kids eating their cupcakes. We ate her favorite meal for dinner that night, cheese ravioli’s.
Today was her class field trip to the pumpkin patch. I think Sophia was just as excited about me riding the bus with her as she was to go to the pumpkin patch. We spent a couple of hours at the pumpkin farm. They had a petting zoo and Sophia had fun feeding all the animals. I was glad that she was not scared after getting bit by a pony about a month ago. She went thru the children’s corn maze with her physical therapist, Barbara. Then she took a hey ride and was a crack up covering her self with hay and then saying, “I can’t find me feet!” After that the kids all listened to the story of the pumpkin. Then finally they went into the pumpkin patch and picked out a small pumpkin. Sophia had to explore the whole field and was the last child to choose her pumpkin. She sang “wheels on the bus” the whole way back to school.
Thursday is her halloween party at school. She is going in her pirate costume and is supposed to bring candy to trick or treat to the different class rooms.
Friday we are going to a halloween party at the library in the morning. The librarian there is so awesome and has planned some fun holiday activities.
So we have an action packed week full of fun activities. Hope you all enjoy your week too. Thanks for reading.
Some how I blinked and Sophia isn’t a little kid anymore. Monday is her fourth birthday. We have 50 confirmed RSVP’s for her birthday party this coming Sunday. Almost every single person we invited is coming to celebrate. To us, this just shows how many people love and care about her in our community. I have been blown away from the response of people who wanted to come. When Sophia has a birthday it is a big deal. When any CHD kid has another birthday it is a big deal. What this child has over come in the past year of her life is amazing. There is just something special about this child that draws people to her personality. My dearest friend Angela always says that Sophia is her best friend. My daughter inspires me. She doesn’t let her challenges get her down the way mine do for me. A year ago my daughter had just began walking, could not go up and down stairs and 50% of her language was not understandable. In the past year she has been sick more times than I have in my entire life, and even hospitalized a week for being sick. She has endured countless doctor appointments, a heart cath, taking tons of medications every day, many blood draws and more poking and prodding than any child should have to take. What is so amazing about all this is it never gets her down, it makes her stronger. She can now go up and down stairs by her self and run and people can understand the majority of what she says. Sophia, although she can have her moments is a truly sweet, kind and loving child. She hugs everyone she meets regardless if she has met them before or if they are a doctor. She is never scared of people, even those in the medical field. I draw so much strength from her experiences. When ever I face a tough situation, I think about what my kid has been through and accomplished and it makes me put things in perspective. I tell this to my friends and family all the time.
So because it is on the eve of her birthday (almost) I feel I must thank the people in her life who have helped my daughter overcome her challenges. First of course, our family and in particular her grandparents who are ALWAYS there for Sophia and us in every way. Secondly our friends, who are always so encouraging and present in Sophia’s life. Third are her care providers, these doctors, nurses, teachers and therapists have so gone above and beyond the call of duty for my kid. Lastly, the people who read this blog. The comments that you all leave us are a huge source of support and help us feel like we are not the only people going through some of our life struggles.
As always, thanks for reading and I will post next week how the party went. Cheer’s to Sophia!
A couple of days ago Sophia’s doctor suggested that as long as our insurance would pay for it we should start using a nebulizer on her twice a day while she is sick. He then wants us to use it once a day to help reduce congestion after she gets over her bronchitis. So far the nebulizer is helping. It isn’t exactly a “silver bullet” but is for sure making a positive difference in reducing her snot and cough. Last night was the first night in forever that she did not wake up coughing and crying for me. She slept much more soundly and comfortably all night (finally!!!). She started feeling better yesterday afternoon and has began to eat more. Sophia has been slowly losing weight over the last few months and it is starting to concern Michael, myself and our family. She has never been a skinny kid but now is looking thinner than she ever has in the past. We really attribute the weight loss to her being so sick so often in particular ear infections. When she does not feel good, she just does not want to eat. Sophia is a good eater when she is well, so that is when she usually makes up for her weight losses. The bummer of the situation is that she just has not had very long stretches of time when she has been well lately.
Last night when I put her to bed she asked if she could go to school in the morning. I told her no, that there was not any school today but that we could go to preschool time at the library if she felt up to it. Our local library has awesome programming for kids and Sophia loves to go.
I am looking forward to this weekend. Hopefully Sophia is feeling much better so we can attend a wedding of a family friend on Saturday evening. We also have plans to go on a halloween train ride on Sunday afternoon with her grandparents. My girl really deserves to have some fun.
