Our Fight against Gaucher's Disease type 2 or 3
Stressed, overwhelmed, and sad…S.O.S. That is how I am feeling right now. We move in one month to Las Vegas (which I am really looking forward to). However, Daddy still does not have a job after sending out over 100 resumes (with only 2 phone interviews, one in-person interview) in three months, complications with Abby’s […]
[Continue reading...]In the past month, Hannah has seemed to lose some of her physical skills that she has worked so hard to learn. She no longer even tries to go from a kneeling to a standing position using something to lean against. She no longer feels comfortable sitting in a chair. She does not seem to […]
[Continue reading...]At 21 months old, Hannah is embarking on her first surgery, and I am a major stress case about it. What type of surgery…EAR TUBES! Yes, Hannah has had fluid in her ears for many months now, and we have been debating for a few months now whether or not to put tubes in her […]
[Continue reading...]As we get ready for this major life change (move to Vegas), I have been doing some serious thinking about Hannah’s therapy needs. From day #1, we have been winging it because we weren’t sure what Hannah’s progress would be and even if she would be with us by this point. With the exception of […]
[Continue reading...]Finally, we have something that we can write off for another 6 to 9 months! Hannah had her echocardiogram and EKG done. Her EKG looked normal, and her echocardiogram shows that her “slightly dilated aorta” is still just that — slightly dilated. Dr. Jeffries, Hannah’s cardiogeneticist, put it into perspective. The high-normal is 1.77 cm […]
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We have our 6-month followup with the Dr. Jeffries, Hannah’s cardiologist over at TCH. During her last visit, it was noted that her aorta was slightly dilated and that she had a patent foramen ovale. There is a part of me that is not as concerned about cardiac issues because that is not a normal […]
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