This past weekend we went to the Natural History Museum. Its a place near and dear to both me and my Husband's hearts. I absolutely LOVED going to the Houston Natural History Museum as a kid, and Tommy practically grew up at the one here in San Diego. We decided that we had to take Charlie now that she is starting to notice things that are around her. I am always nervous bringing her around big crowds, but I feel like she is now strong enough to venture out a bit. We kept her in her stroller and away from other kids to minimize the risk. She had such a blast.
She got a bit freaked out by the hanging skeletons.
Something that sort of irked me when we took a lunch break. We got some weird looks when setting up her food pump. Yes, its different but please don't stare and whisper. I don't want pity either, I just want to be a normal new Mom who is dealing with slightly different circumstances. I think every Mom wants to just feel normal, whatever the hell 'normal' means. I'm so incredibly lucky that all I have to deal with is a feeding tube. I know there are a lot of Moms out there dealing with IVs, oxygen, feeding tubes, etc. I try to repeat that to myself when I get frustrated with having to carry the feeding pump equipment. These blog entries may go off on tangents by the way, I'm going to use them as sort of a venting mechanism. I know my close friends are getting tired of being my vent release all the time, plus I don't always want to be negative around them.
Anyway, this week will be quieter which is nice. Only thing is a follow up appointment with the pediatrician for some anemia we had going on last week and a visit by our amazing hospice nurse. Yes, we are on concurrent care hospice. It sounds a lot scarier than it is. Essentially because she has a very serious disorder, we qualify for hospice care. Its quite an amazing thing because they help us get medical equipment and medication all delivered to the house. They also have helped me with medical benefits that Charlie qualifies for to help her throughout her life. We are able to get therapy three times a week for her! Our nurse is also the sweetest person ever and has helped keep us out of the hospital several times. If you ever want to donate to an amazing organization, Elizabeth Hospice is amazing. I encourage anyone with a child (especially baby) with GA2 to look into hospice care. It helps so that you dont always have to leave the house to get supplies or if your child is just a little sick, you may be able to treat at home.
Anyway, this week will be quieter which is nice. Only thing is a follow up appointment with the pediatrician for some anemia we had going on last week and a visit by our amazing hospice nurse. Yes, we are on concurrent care hospice. It sounds a lot scarier than it is. Essentially because she has a very serious disorder, we qualify for hospice care. Its quite an amazing thing because they help us get medical equipment and medication all delivered to the house. They also have helped me with medical benefits that Charlie qualifies for to help her throughout her life. We are able to get therapy three times a week for her! Our nurse is also the sweetest person ever and has helped keep us out of the hospital several times. If you ever want to donate to an amazing organization, Elizabeth Hospice is amazing. I encourage anyone with a child (especially baby) with GA2 to look into hospice care. It helps so that you dont always have to leave the house to get supplies or if your child is just a little sick, you may be able to treat at home.
We have some friends visiting from out of town so hopefully I can meet up with them and get out of the house too. Anyway, Cheers and Happy Tuesday everyone!
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