I left you at the beginning of 2013 and here we are almost halfway through 2014. I have been struggling with how much to share on the internet, in regards to the kids and their privacy. It started to nag at me back in 2013 and that brought this blog to a standstill. Because when I censor myself, my writing does not come easily, rather it is jerky with stops and starts. It kinda sputters. I read what I wrote and don't like it and then I hit the delete button. Thus, no posts.
So here I am posting, but not sure what to say. Maybe I will do some housekeeping and just bring you up to date, one post at a time. Let's start with Sarah, one of my most favorite subjects. She is doing very well. She is stable medically right now. She did have a hospitalization a few months ago, actually we both did, at the same time! It started with the fact that we got our flu shots like good girls, but still got Influenza A. I came down with it first and Sarah followed a few days later. It was a bear. Lots of coughing, which never bodes well for Sarah. Her coughing spasms became too severe, her airway closed and I had to call 911. So, off we went to the hospital, where Sarah began to improve within a couple of days. However, I came down with a MRSA infection in my leg and was also promptly hospitalized (same floor, different room). At which point my family mobilized. Jimmy came up from DC, John from NJ and my brother from Northern MA. Sister Ali lives in the same town. Long story short, Sarah got to go home first, Jimmy and John stayed home with her until I was discharged. Then I was out of work for a month. My brother and John stayed with us until I could lift Sarah safely and comfortably. I am so blessed to have such a wonderful family.
We have both recovered completely and I am so thankful. Either situation could have been a disaster. After it was all over, Sarah's pediatrician suggested she see 2 specialists at Children's Hospital, for their opinions on this airway problem that Sarah has with any sort of cold/cough. She has struggled with it her whole life, which is why I try so hard to keep her cold-free. Up until this Flu, putting her on steroids has allowed her airway to remain open when she coughed. This time it didn't work. So off we went, one doc was an ENT and one was a pulmonologist. The consensus is that there is nothing to be done at this time. It is not severe enough for a tracheostomy. It is possible that this was a one-time thing because the Flu virus was so strong. It is also possible that Sarah has upped the ante and this response will be her new normal with every cold. We just don't know which it is. The ENT said that if it happens to this severe degree the next couple of times she gets a cold, then he will want to put her under and examine the area beneath her larynx, where he suspects the spasms originate. He is pretty sure that he will find nothing out of the ordinary, that it only happens when she has a virus, there is some swelling in that area and the post nasal drip triggers the spasms. Uggh. We shall see.
Right now I am going through the process off obtaining guardianship for Sarah. She will turn 18 in August. It is a process that takes time and organization. Getting all the ducks in a row is challenging. Hiring an attorney is key for me because I don't want to miss anything important. There are lots of details, of which I find very confusing. I am a medical person, not a legal one, lol. We are slowly getting there.
Otherwise, nothing else new on the Sarah front. She is eating well, holding onto her weight and seems very happy. She still loves her american girl doll-Emily. She has been introduced to Barbara Streisand and Whitney Houston on DVDs, Barbara is a big hit right now :) She is still riding once a week, when she is well. She really still likes it.
I'm sure there is more to say about her, but my fingers are tired. Ha!
