Happy Fourth of July!
We are having our big family barbecue today (it's actually the 3rd of July). It will be nice to have both sides of the family together before Clare's heart cath. We are going down to Boston this upcoming Thursday. She has pre-op on Thursday, which means a whole battery of tests - x-rays, IV, blood work, lung scans. Then her cath will be on Friday, and she will be discharged on Saturday.
Clare is smiling more and more every day. She is so precious! She had her evaluation for her Early Intervention Program last week. Two therapists came and played with her for an hour. She was exhausted when they were done and slept for three hours afterward! It breaks my heart to think that 45 minutes of looking at a toy or holding one in her hand wipes her out. As expected, Clare has poor muscle tone, flexible joints, and low endurance. She was able to hold a ring in her right hand for a good amount of time, but not her left hand. She also has trouble holding her head up for an extended period of time, and has trouble doing anything when she's lying flat. She needs to be well-supported in her head and trunk to be able to really do things with her arms. We are hoping the endurance improves once her heart issues are treated, which should help with her therapy because then she can do more for longer stretches. She will have occupational therapy once a week to help with the poor muscle tone. The therapists thought she was doing great cognitively, though. We were very happy to hear that! She is very alert and aware of her surroundings. So we need to help her continue to explore those surroundings so she can continue to grow cognitively. That is what the therapy will help us do for her.
Clare had her 3-month photos taken two days ago. We're hoping to get them back soon, so I can post one! We were very happy with the photos and cannot wait to share them!
So now we're off to Boston soon for her first cath. We will let everyone know how it goes!
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