So next week is Evan's 1 year appointment at CHOP. I'm not nervous persay but I'm definitely on edge. Compounded on top of this is the fact that I have to go to this appointment with Evan by myself. I go to plenty of doctor appointments with the kids alone. Michael has been to the pediatrician MAYBE 2 times in 3 years. I went to every ultrasound appointment by myself when the boys were being diagnosed for Pyloric Stenosis. This isn't the pediatrician's office. It's an apointment in a huge city hospital where sick kids are all over the place fighting terrible diseases and it makes me anxious. And it's about our baby who will have to have bloodwork done and I can't fathom how I will stand to hold him while they stick his little arm to get the blood. After having two baby's need difficult IV's for severe dehydration from PS and 2 sweat tests I knew enough that Michael had to be the one to accompany Evan in the 3rd sweat test and any blood work he may need in the future. It's just terrible to hear your baby scream and not be able to do anything about it. Dads have to do that stuff.
Last week I told Michael that this appointment was coming up and he needed to make sure he had off from work which several months ago he assured me that this wouldn't be an issue. Well it's an issue and he cannot get off. I was so angry. Angry because in December he was able to get off for numerous Mummers events and New Years. Angry because he said he didn't want to ask off back then because he was asking for all those days off and didn't want to look bad but that it wouldn't be a problem come the new year. I got that. But he waited a month and a half to find out and of course something was scheduled for that day. I am so angry i haven't even told him I'm angry. That's how I know I'm really mad.
So I asked my mom if she could go with me. She has been watching my niece while my sister is home and since my sis will probably have ot go to NYC next Thursday and Friday and my dad isn't comfortable with staying with the baby all day long my mom can't go unless she brings the baby. Well I don't want the baby to go to the hospital and fear her catching some kind of bug lingering around there. Plus that kid can cry. It's not just any cry, it's that high pitched screech that only estrogen can cause. It makes me thankful that I had boys...they don't have those octaves even as infants!
Anyway, this is just my vent about constantly being the parent who has to be "on". I'll put on my big girl pants and do it, of course, but I don't have to like it.
Hope everyone is having a fun day today. This day last year I was miserable. We had the new possible CF news in our heads 24/7 and a vomitting baby and a doctor refusing to let me get Evan an ultrasound to rule out Pyloric Stenosis....because in her mind there was no way we would have 2 babies with PS and we were probaly just looking at reflux. Well she was wrong. In two days it will be 1 year since Evan's PS surgery which was followed by the worst PS recovery ever (in my mind!). Glad those days are long behind us and these are exactly the reasons that keep me from having the 3rd baby I always wanted (aaaand that girl baby scream I referenced earlier helps with that feeling as well).
Thursday, February 14, 2013
Tuesday, February 5, 2013
Day 6 came and went
So February 1 was the anniversary of Day 6. Day 6 was the day that the words Cystic Fibrosis came into our lives and would forever change our landscape. Looking back on those dark days last year I remember thinking that life would never be normal. I was so scared to breathe. I would wake up in the middle of the night to feed Evan and hope that I was waking up from a nightmare...each and every time. Thankfully today I have come to terms with our "grey area" status. I am fine with it for the time being becasue Evan is healthy. I also know that should he start to get CF sick some day that I will be more emotionally equipped to handle it. I know more things and have educated myself on the topic enough that it makes sense now. It's all going to be ok. Took me a year to get here but I'm here and that's all that matters.
Yesterday I took a leap and told some family members of Evan's journey in the last year. I was nervous to upset them especially so because my family has suffered some unfortunate events in the last couple months. Both of my grandparents passed away within a day of each other right befroe Christmas. One expected and one very very unexpected. My aunts mother had cancer related surgery and my dear sister is going through some very tough times in her marriage. Needless to say I didn't want to pile on but thought that even though initally they might feel sad that in reality (given all that is going on) Evan's status isn't that big of a deal right now. After the tears were shed they realized that he is A OK and we moved on. It felt good to let that go. I hated having to hold it in but we didn't want to upset my grandmother, god rest her soul.
The reason I finally disclosed this information is that Michael and I signed up for the Great Strides Walk in Philly in April. So I'm going to be putting a blast on the Facebook and send a group email to friends and family for support and I didn't want to blind side them and THEN have to explain.
As for Evan he is currently with a runny nose and a bad attitude. I can't tell if he's teething, has a cold, whatever. He does have a cough at times and it usually comes after I hear congestion in his chest. Sometimes I want to call the CF clinic at CHOP and cry to someone because I feel like he's been sick for so long and i get myself scared that it's a CF cough. I try to remind myself that the doctor told us to be concerned for a cough that is present with no signs of a cold. He's never going to be able to just be sick. He had his 1 year well visit (oh that's right he turned 1 on jan 26!) last week and the pedi said his lungs sound clear and he didn't sound junky even though it was the height of this particular cold. He weighs 22.8 lbs, and is 30 inches long. His head is 18" in circumference. Pretty much in the 75th percentile and doing well. He still does not eat a whole lot of table foods but we've certainly made improvements in the last month or so in foods he will eat. Sill mostly carbs and fruit cups. We have an appointment at CF clinic on Feb. 22. I'm interested to see what will happen there and I'm dying to know if they will diagnose him with CRMS at that time or if we'll just keep him under evaluation. That's all that's going on with us for now.
Yesterday I took a leap and told some family members of Evan's journey in the last year. I was nervous to upset them especially so because my family has suffered some unfortunate events in the last couple months. Both of my grandparents passed away within a day of each other right befroe Christmas. One expected and one very very unexpected. My aunts mother had cancer related surgery and my dear sister is going through some very tough times in her marriage. Needless to say I didn't want to pile on but thought that even though initally they might feel sad that in reality (given all that is going on) Evan's status isn't that big of a deal right now. After the tears were shed they realized that he is A OK and we moved on. It felt good to let that go. I hated having to hold it in but we didn't want to upset my grandmother, god rest her soul.
The reason I finally disclosed this information is that Michael and I signed up for the Great Strides Walk in Philly in April. So I'm going to be putting a blast on the Facebook and send a group email to friends and family for support and I didn't want to blind side them and THEN have to explain.
As for Evan he is currently with a runny nose and a bad attitude. I can't tell if he's teething, has a cold, whatever. He does have a cough at times and it usually comes after I hear congestion in his chest. Sometimes I want to call the CF clinic at CHOP and cry to someone because I feel like he's been sick for so long and i get myself scared that it's a CF cough. I try to remind myself that the doctor told us to be concerned for a cough that is present with no signs of a cold. He's never going to be able to just be sick. He had his 1 year well visit (oh that's right he turned 1 on jan 26!) last week and the pedi said his lungs sound clear and he didn't sound junky even though it was the height of this particular cold. He weighs 22.8 lbs, and is 30 inches long. His head is 18" in circumference. Pretty much in the 75th percentile and doing well. He still does not eat a whole lot of table foods but we've certainly made improvements in the last month or so in foods he will eat. Sill mostly carbs and fruit cups. We have an appointment at CF clinic on Feb. 22. I'm interested to see what will happen there and I'm dying to know if they will diagnose him with CRMS at that time or if we'll just keep him under evaluation. That's all that's going on with us for now.
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