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| Hearing check last week. |
Our daughter turned four just a couple of weeks ago. With this big birthday also comes big medical appointments. You know, the one where you get your hearing checked, get your vision checked, and get four shots. Well, that was her fate last week. During this appointment, she did great. Her hearing is good, her vision is ok (not perfect, but we already knew that from our appointments with her ophthalmologist), and the four shots were administered without too many tears. Now that's a cause for celebration! At this appointment her pediatrician and I recalled several appointments from when our daughter was little. We remarked on her appearance and how well she's doing physically. Our pediatrician is someone who has helped to make this journey feel safe for us to travel!
But today was a day I thought might never come. Our daughter had a regularly scheduled visit with her dermatologist. This same dermatologist was the one who called us from Hawaii when she was only a few weeks old to tell us our daughter had something called "PHACE Syndrome". He began coordinating her care including scans (both MRI and CT on a regular basis), appointments with other specialists (cardiologist, neurologist, and ophthalmologist), monitored her fluctuating medication needs, and was someone I could trust to answer even my most simple questions. I truly believe that God brought him to the Austin area just months before our daughter's birth for the purpose of coordinating her care. He is an amazing man and has been a huge part of our daughter's life.
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| March 2010 |
Today's appointment seemed routine to me. We were having her blood pressure checked, he would look at her hemangioma to check for growth, and we might talk about the idea of using laser treatment in the future. But something happened that I did not expect. He has taken her completely off of her medication. He said that there is no more need for us to see him regularly. He will put a note in her chart and will make sure that if we ever need him we can get to him with no problem, but that we're finished. FINISHED! I did not know we were so close to the end, so this news came over me with a tidal-wave of emotions. All of the things I've treasured in my heart about this journey with my daughter flooded my mind...having teeny tiny IVs inserted into her veins so that she could have scans with contrast, nursing her in doctor's offices as we had to bounce from office to office through the course of a day, keeping track of medications on paper because she took so many different medicines that we were unable to monitor them in our heads, going back to work and having family and friends stay with our daughter because it was not safe for her to be around other babies due to her steroids, looking at my tiny baby and wondering how she would ever be able to look at herself in the mirror, being frightened to receive questions strangers would ask about my baby's appearance...and now we're finished. FINISHED!
We will continue to monitor the growth of her hemangioma, and if there is any cause for concern we will get back on the medicine. We will continue to monitor her carotid artery as she grows and will continue to have conversations with doctors. But overall, this part of this journey is behind us.
I Thessalonians 5:18 says, "In everything give thanks: for this is the will of God in Christ Jesus concerning you." I am thankful for this journey and for the love we've received from so many of you. I am not the same person I was four years ago before our daughter was born, and I am thankful for the opportunities I've had to share our story with so many.
Please know that I also think of you when I treasure all of these things in my heart! Without our friends, family, and church, I can't imagine how different this journey would have been.
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| Dressed up like Elsa to go see "Frozen" for her birthday party! |
