lunch date with mom at chick fil a
circle time at school
This update is definitely long overdue. Facebook has certainly become the easier way to communicate and keep in touch with people, but we decided it was probably time to give a more detailed update on what’s been happening with Sarah on the blog (realizing there are some that don’t use facebook).
This past Feb 8 was the 3 year anniversary of when we got the news that Sarah had cancer. We spent the evening of Feb 8 remembering all the details of that day…the weather, order of events, our first and second phones calls after the news came, where our other kids were, etc. It was a good experience for us, reminding us that God is still God and he is still good, even in the difficult times. He has brought Sarah through so much in her short little life.
Sarah continues to improve physically. The OMA disorder still affects her balance and coordination daily, but she is improving nonetheless. She still goes to Hopkins once a month for a 4-5 hour infusion of IVIG. We have found that this drug helps keep her immune system stable, thus making her symptoms less severe. This allows her to focus on other things other than her physical needs.
This school year Sarah has been enrolled in PEP (pre-school Education Program) in Montgomery County Public Schools. This has been a wonderful experience for both Sarah and for us. She is learning so much and we are seeing improvement in many areas, especially speech. For example, at the beginning of the school year, Sarah was only using 1 and 2 syllable words, and not putting sentences together. Now, after 6 months of this class, her speech has improved drastically. We can’t get her to stop talking at times! Her class is made up of only 2 girls and 5 boys, which has allowed her the opportunity to make her own friends. She has a “very best friend” (as she would say) with a boy named Theo, and they are too cute together!
Another symptom of her OMA are her frequent irrational angry outbursts. We have noticed that her outbursts have become more frequent and more irrational, so we asked the doctor about it. He gave us a long and helpful explanation. We know that Sarah’s cerebellum was indirectly affected by the cancer. The cerebellum controls muscle coordination and balance, which is why she has the physical challenges she does, but it is also involved in the ability to concentrate, and control emotions and behaviors. I was discussing Sarah’s tendency to be fine one minute and then be angry for an irrational reason the next. He explained that they would see this kind of behavior in people with cerebellum injuries or tumors. He also told us that Sarah will always have academic challenges. He is really happy that she is doing well in school because he wants her to have the feeling of success now so that she likes school, so when it becomes hard she won’t give up. I think this talk with the doctor was the first time that it really hit me that these symptoms may never change. We’ve heard that before, but in the back of my mind I think I’ve always thought she would outgrow these kinds of behaviors. The reality is, we just don’t know, but the doctor reminded us once again that these are going to be life issues for Sarah, and they aren’t going to go away. It was good to get direction about her future, but discouraging at the same time. I trust you understand those emotions.
Thank you for carrying us on your hearts these last three years. I was talking with the nurses yesterday and we were remembering when we first brought Sarah to Hopkins (the date of her diagnosis…Feb 8, 2008). At that time, she had completely lost her ability run, walk, and was not even able to sit up on her own. Those were dark days, but God has brought us through. We are so grateful for modern medicine and for all the doctors, therapists, teachers, and nurses that the Lord has provided for Sarah these last three years.
There’s a lot we don’t know suffering. But there is far more that we DO know about God. We chose to remember what we DO know. God is still God, and God is still good.
Thanks for your prayers and friendship.
silly faces with daddy
