The biggest happening over the last few months has been the discovery of multiple blood disorders in 5 of our 7 children. Upon a further understanding of our family history our pediatrician decided to do some genetic testing on all of my and my sister's children. They underwent extensive blood work and EKG's. It's all so confusing because some of them have multiple blood disorders one of them being so rare that only 1.6 in a million people have the disorder, only 1200 (yes, 1200) people in the world have been diagnosed with the disorder and 5 of my children have it! CRAZY!!! It's a very scary thing, but we have found a wonderful network of people who are teaching us so very much along the way. We are so blessed because as of yet, none of them are showing symptoms of this particular disorder (Plasminogen Deficiency). Dove tested positive for having this and another disorder, but he is not being given an official diagnosis as of yet because of his age. This is very concerning because he is the ONLY one of them who is showing any signs of this disorder. It's very frustrating! Eagle and Emu are both being very closely monitored because their levels were dangerously low and it is likely that they will have other problems caused by their deficiency. Hawk & Eagle both only have this one disorder, PD. Emu & Duckling have PD and another blood disorder (the hematologist is a bit confused because their disorders may somehow contradict each other and their will be a bigger concern for Duckling when she hits childbearing age). Dove tested positive for having PD and a completely different disorder than all his siblings. He will be retested after he turns a year old and then will be given his official diagnosis if he still is found to have the disorders. The only signs that any of them show of having any disorder is that they bruise easy and it takes them a while to heal. They are all due to have further testing and we are in the very early stages of trying to figure this all out.
We've just gotten over bouts of sickness around here. It started a few days after Thanksgiving. Coughs, colds, sore throats. Duckling was first and had a diagnosis of Bronchitis. Next was Hawk with strep throat. The following week Duckling, Macaw and Eagle were tested for both the flu and strep throat but all tests were negative. All this time from Thanksgiving till Christmas Dove had what seemed like a little cold. He was just a bit congested off and on and he had a bit of a cough. Nothing that warranted a Dr. visit. As we were getting ready to head to my parents the day before Christmas Eve, Dove started wheezing. The ER diagnosed him with RSV based on symptoms (they didn't test him). They gave him an inhaler and sent him home. He got better, then worse and even worse..by later that week we were in the Pediatrician's office. He was tested and diagnosed with both RSV and Rhinovirus and he was diagnosed with Bronciolitis, Pink Eye and a Double Ear Infection. All in all...he was a complete MESS...a miserable mess! No one can imagine the grief of having a baby with RSV unless you've lived it. You do NOT know a sick baby unless you've had one like this! We were very fortunate to be able to keep him out of the hospital but it was not easy. Constant suctioning, nebulizer treatments every 4 hours, steam rooms, elevation....let me tell you it was exhausting!! 8 weeks, he was sick for 8 long miserable weeks. 7 kids and I've never had one so sick in my life. I hope that we never go through anything like that again. They tell us that he is likely to have asthma and follow in Eagle's footsteps, that makes me sad to think I will have another kid who has to live with a lung condition like that, but at least I have all of the experience and can better care for Dove and Eagle is such a great big brother and can easily recognize when Dove is having trouble breathing.
We were so very blessed to have yet another unexpected Christmas with my mother. It's quite so bittersweet as she truly nears the end of her earthside journey. Nothing can prepare my children or me for what we have in store for us when we lose my mother. Nothing has been more difficult for me than this journey with her.
So, yes...It's been a very long 3 months and we have stayed very busy! It's nice to have things calming down a bit!