Please consider making a donation to support Sophia in the 2010 American Heart Association Heart Walk.
For the second year, through special arrangement with the AHA. All funds raised by our team will be restricted to funding congenital heart defect research.
You may make a secure donation at the link below.
Where does the time go? It is almost 2010 and my little girl is growing up so fast. She has done really well in school this semester, making lots of progress on her lessons. Even though Sophia started school last year a semester after all the other children, she has totally caught up with her school work. This week was her holiday program at school. She was more excited about wearing a fancy dress to school than the singing part. These days Sophia is really into dancing (in her pink tutu) and singing and putting on little shows for Michael and I. We are thinking about enrolling her in dance class after the first of the year.
The first couple months of school it seemed like Sophia was constantly ill with some sort of upper resp junk. Which resulted in her missing a lot of school. At the advice of her doctor we put Sophia back on a daily nebulizer treatment of Pulmicort. This seems to have made a positive difference. She is for sure getting sick less often, although right now she is working on a heck of a cold. We did decided to vaccinate Sophia for H1N1 and she received her Swine flu shot the day after her 5th birthday(she’d had her season flu shot before school started).
Sophia is so excited for Santa and talks about him constantly. My favorite story this holiday season was a couple of weeks ago while we were shopping in Costco, Sophia heard the “clip clop” sounds from a toy rocking horse and gasped and asked me “Mommy, did you hear that?” I asked her what it that she thought she heard and she said,”Santa and the reindeer are here, they must be checking up on me to make sure I am being a good girl?” We have been to see three different Santa’s and every time she tells him she wants a pink big girl bike, and a bat and ball. I think Santa has got this covered.
Our family stays pretty close to Kansas City for the holidays. On Christmas eve we spend the evening with Michael’s side of the family. Then on Christmas day we spend most of the day with my family. I am not sure what are plans are for New Year’s Eve yet.
A couple of final things I wanted to mention before I close this post…. After the first of the year I will be returning back to work after staying home to manage Sophia’s health, etc for the past five years. It has honestly been the most rewarding and challenging 5 years of my life. I want to publicly thank, from the bottom of my heart all the the sacrifices that my husband, family and friends have made in order for me to be home with Sophia over these past five years. Especially my sweet, loving and patient husband. He works so hard and overlooks all of my imperfections daily so that I can be a stay at home mom to our precious daughter. Going back to work full time will be a big adjustment for all of us, but is necessary and it is the right time. I am also rejoining the symphony that I played with prior to Sophia being born. I am confident that 2010 with be a year of lots of positive changes for Sophia and our family. Michael and I wish you all a year of peace, health and happiness. Thanks you all for keeping up with our daughter. The support we get from this blog means a lot to us. Happy Holidays everyone! Please leave a comment if you have time. We would love to hear from you.
A NPR story featuring our family.
KCUR: Parents Seek Answers Amid Vaccine Shortage (2009-11-04).
Let me start off by saying how sorry I am that I have not posted more often. Sophia has been sick off and on since school started 6 weeks ago. Unfortunately, she has missed a lot of school because of this. Michael and I have also had a round of some kind of stomach virus a couple weeks ago.
I did some observation in Sophia’s class room the other day. Her teachers think she is doing quite well and has been showing much interest in math lately. The other day I took her to my brothers work (Whiteman AFB) for a tour and Sophia was amazed and eager to learn how all the machines worked that they used to repair aircrafts.
Sophia turns five in about 2 1/2 weeks and we are planning a super fun party at a local independent children’s book store. They do lots of really creative themed parties, we picked the Arty Party for Sophia because she loves to make arts and crafts. The party starts off with story time, then they make four different art projects including decorating their own individual cakes and concludes with a book swap.
I also interviewed last week for my old position at the State of Missouri. This was the job I had to quit when Sophia was born. I am hoping to hear back if I got the job some time in the next week or so.
As always, thanks for checking in with us. Hope everyone stays healthy.
Sophia started back to school this week. At first she was not sure if she wanted to go back and said she just wanted to stay home with me. After attending school for a couple of days she is now just as enthusiastic as ever about school. She likes being an older kid in her class and showing the younger children where things are and explaining the teachers rules. Her teacher told Michael yesterday when he picked her up that she seemed to be getting more adjusted in her class. Part of the problem is that she hates mornings and fights me about getting herself dressed each morning. This is getting a little better every day.
Sophia is getting really excited about our family welcoming a new baby soon (my sister in law is due in about a month). This has prompted a lot of really thought provoking questions like where babies come from and when is daddy going to have one. This has also made her much more curious about her female parts and when she is going to become a lady. I have really been enjoying answering these questions and am excited at how she is growing up.
I wanted to explain why have not been able to write much lately. I have decided to go back to work full time. Shortly after Sophia was born I quit my career position and have since stayed home to be a full time mom. This is no longer necessary (thank goodness Sophia’s health has been so great lately). I do not have a job yet and am hoping to be employed as soon as possible. This is really good news for our family. My husband has carried the burden for the past 4 1/2 years so that I can stay at home with Sophia. For this I am eternally thankful. I would also like to take this opportunity to thank my family and friends for all the support that we’ve received since Sophia was born. I sometimes imagine how people who are put in our situation manage with out the support of friends and family. I know I am blessed and loved. But now it is time to write the next chapter for our family. As my dad always says, I know everything is going to be ok.
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Originally uploaded by wisdomheart
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Originally uploaded by wisdomheart
Sophia loves parties, in particular birthday parties. She is just as excited about other peoples birthdays as her own. We have a lot of family birthdays in June and July so Sophia has been over joyed at the opportunity to celebrate everyones birthdays. Tomorrow night we are going out to dinner with Michael’s family to celebrate three birthdays and this weekend we have two big family birthday parties to attend. Sophia is on cloud nine about our social schedule and all she talks about is eating cake and seeing her family.
Michael and I have been working with Sophia to write her name. For the most part, she can write her name with out us telling her which letter comes next. We are really proud of her and I know her teacher’s will be to when she goes back to school in the fall. Although I know Sophia is really enjoying her summer, she often refers to her teachers and her school. So I know she is missing going to class every day and her school friends.
Finally I wanted to share a story about what happened the other day at the spray water park (which is located at the entrance of the local pool) . As you all know Sophia loves to go swimming so sometimes after swimming class (held in an indoor pool) we go to the local outdoor pool to work on what she learned in swimming class that day. We were getting ready to leave and Sophia wanted to run thru the the spray water area of the park. I said that was fine and took my place sitting on one of the many benches surrounding the water spouts. I noticed this nice looking family sitting on a blanket in the grass near by; a dad, teenage girl, a little blind girl close to Sophia’s age and a baby. The dad led the blind girl over to one of the benches and told her to have fun playing in the water. Then he went back to the blanket with his other two daughters. Sophia promptly came up to me and asked if she could play with the girl. I said yes, but told Sophia that she could not see. Sophia’s response was “ok” and she immediately went over and introduced herself. The other little girl smiled and excitedly introduced herself as well. The two girls held hands, played and had so much fun for the next 15 minutes. Then her dad came over and said how nice my daughter was for playing with his child. I said thank you and told him it looked like he was raising a lovely daughter too. I was so impressed with how this father was clearly teaching his child to not be fearful of the world just because of her handicap. She was such a beautiful and happy child just like my daughter and watching them play together was a very joyful moment to me. I am proud of Sophia for being such a kind, sweet and generous girl. I love her more everyday and try not to take being her mom or the relationship we have for granted.
I wanted to post that Sophia is all well now (from her pneumonia). I am so pleased that she recovered with in a week and a half with just the help of an antibiotic and periodic nebulizer treatments. It had been on my mind that exactly a year ago July 5th 2008 Sophia had been hospitalized for pneumonia for 5 days and later again for a week in January 2009 for the same thing. So we have now set a record for the longest time that Sophia has not been admitted to the hospital. Her doctors, father, family and I all think her overall health is great. Her height and weight are right were they should be. I finally feel like she is able to fight infections in a more “normal” way with out taking multiple rounds of antibiotics or hospitalizations. I believe those days are hopefully behind us now.
Sophia had an ENT appointment last week that I wanted to mention. After another hearing test her doctor concluded that Sophia is still showing evidence of minimal hearing loss in her right ear (left ear was with in normal range). He said that a hearing aide was an option, but did not recommend it because he did not feel she would leave it on and because the hearing in her left ear was with in normal range. The doctor said that as long as she was hearing with in normal range on her left side that the hearing loss should not effect her speech very much (if at all). He said we should repeat the hearing test annually. The cause for the hearing loss is like some abnormality in the bone structure in her little ears. This would be another symptom of Sophia’s DiGeorge syndrome.
Hi all. I just wanted to quickly post that Sophia has been feeling much better the past couple of days. She is still needing a few breathing treatments daily, but overall she is on the mend. We had a great holiday yesterday. In the morning we went to the city market with my parents and scored lots of fresh produce. Sophia loves to go because she “samples” all the berries the farmers are selling that are near her grasp. Later we spent the evening with Michael’s family eating dinner and letting off our own fireworks. Sophia was some what scare of the fireworks that made loud noises. Then we came home and watched “big” fireworks on television. She said she might like to go see “big” fireworks when she gets older. Michael and I hope everybody had a safe and happy holiday.
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