Monday was a hard day for both me and Marcus. Even though I felt peaceful about Samantha's situation, I was very emotional all day. I felt like things would work out, but was really emotional every time I thought about her. That night, when I went to bed, I had a hard time unwinding from the day. I took out Samantha's scrapbook, looked at all the pictures, read her life story that I had documented, and read her baby blessing, followed by her great grandpa's blessing. After all of that, I felt so confident that she would be ok. It was as if someone said, "Tomorrow you will wake up." And, because it's such an obvious statement, I would say "Well, of course I will." It was that same feeling. "Samantha will be fine." "Of course she will be." After so many days of worry, concern, and too much emotional outlet, I felt a very strong confidence that all would be fine.
The next day we had a doctor appointment with Dr. Siddiqi (plastic surgeon) and Dr. Walker (neurosurgeon). This was a routine after surgery check up. Dr. Siddiqi said that because her brain hasn't grown at all, her skull has fallen back to where it was previously. As a part of the surgery, he had pushed her skull out a little to create room. Her brain has not filled up that space, and so the skull has gone back to where it used to be. This isn't great, but if her brain does begin to grow, then her skull will grow back out again.
We then met with Dr. Walker. I asked him about Samantha and her brain not growing. He gave me some very encouraging words. I've told this so many times, I think I remember those key phrases he used...He said:
Generally microcephalics have a shorter life span or comprised quality of life because there are other issues. (troubles eating, moving, etc) Samantha doesn't have any other issue, besides the seizures. This could be a problem if she goes status (goes into a seizure and never comes out of it) or if she aspirates while seizing. These could all be problems, but they are uncommon. Samantha doesn't fit the peg-hole of a typical microcephalic. They are usually severely mentally retarded, and Samantha isn't retarded -- she's delayed, but not retarded. She is healthy, interactive -- certainly doing much more than anyone ever expected. She is amazing. Head size doesn't determine life expectancy, it's the other issues involved. She really is amazing.
With that said, I believe it's the seizure problem that Annie was concerned about. But, I really do feel like we'll get that under control somehow, sometime. Those words brought so much peace, and it reconfirmed the feelings I had had the night before. I walked out of that doctor office feeling like my child was the smartest, brightest, most interactive, and amazing child in the world! I know that technically that's not true, but in my world she sure is. Thank you so much for your continual prayers and support. We know that there will still be ups and downs, but for now, we can all enjoy this up.
4 comments:
Yea! I'm glad that there was good news and that it reaffirmed what you thought the entire time!
You are the best mom Samantha could ever ask for! Aren't the little successes and words of encouragement so soothing?
that is so good to hear, jenny! i'm so happy for you guys!
That is great Jenny! Your family has been in our prayers. You know what, she IS the smartest, cutest most interactive baby! :) I miss seeing her every sunday at our meetings in her cute dresses!
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