Lucy had her last synagis shot at the end of March. Synagis is a prescription injection of antibodies that is given monthly to help protect high-risk infants from severe RSV disease throughout the RSV season. Our synagis nurse Phylis is amazing and loves Lucy. She has gone to bat for us in helping to get this shot covered (it's expensive!!!). Lucy however is not a fan......and I guess I can understand why....she always gets a shot when Phylis shows up. The last shot seemed to be quite traumatic. Lucy was hysterical at the sight of Phylis. The following day I took Lucy on some errands and as I took her out of the car, she started crying immediately. At our next stop, same thing. When I got home I told Mike, we need to start taking Lucy places other than the doctor! Since then we have gone on small errands to Target, the mall and walks around the neighborhood.
We had our six month review with Early Intervention. It was so encouraging to see how far we have come, especially since we have only been having sessions for four months. We brought on services in October, but due to our November hospital stint, didn't start with any of the therapists until December. A positioning chair and g-tube surgery were almost deemed necessary in October. We never needed a positioning chair. I credit our parents for diligently doing Lucy physical therapy exercises daily. As of this weekend, Lucy is walking with her push toy on her own. She will most likely be walking in a month. Her feeding is progressing well too. We are focusing on liquid intake. Our goal after the trial was 1 ounce of water and formula a day. We are working on consistently taking 3 ounces now (only a month after the trial). If she can consistently drink 16 ounces of liquid a day we will start discussing another trial. Hopefully since I have been through it before, I'll be less of a mess. We also had an occupational therapist come in for evaluation to possibly help with Lucy's sensory issues and some bedtime issues. The OT said the Lucy is a pretty typical one year old, but she can give us some skills to help with her coping. One thing that was recommended is social stories. This would be where we take pictures of people and places and before we leave the house on a trip, we would show Lucy the pictures. For example, for hospital appointments we could show her pictures of Dr. Husayni, nurse Kelly, the hospital and possibly a room. The social stories would allow her have an expectation of where we are going and what will be happening.
We go back to the hospital next week for our first appointment since February. It's the longest span without a visit or stay at hospital at ten weeks. The week leading up to these appointments can be filled with anxiety because we don't know what can happen. We only hope to get another three month pass!
When we first found out about Lucy's diagnosis, I knew somehow I wanted to become involved in raising awareness and helping other families. On June 13th we will take our first steps as we walk in the Congenital Heart Walk, under team 'I Love Lucy'. We are fundraising to support Adult Congenital Heart Association and the Children's Heart Foundation. If you'd like to support our fundraising or walk with us,
please visit the link below (cut and copy to your web browser):
http://events.congenitalheartwalk.org/site/TR?px=1086479&pg=personal&fr_id=1240&et=iyYWQXE1eb3A3xvGd2c7Rg&s_tafId=1461
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