"Do you ever feel like a plastic bag, drifting through the wind wanting to start again? Do you ever feel, feel so paper thin, like a house of cards, one blow from caving in? Do you ever feel already buried deep, 6 feet under screams and no one seems to hear a thing? Do you know that there's still a chance for you? Cause there's a spark in you, you've just got to ignite the light and let it shine. Just own the night, like the 4th of July, cause baby you're a firework, come on show them what you're worth. You don't have to feel like a wasted space, your original, cannot be replaced. If you only knew what the future holds, after a hurricane comes a rainbow. Maybe your reason why all the doors are closed, so you could open one that leads you to the perfect road. Like a lighting bolt, your heart with blow and when it's time you'll know. You've just got to ignite the light and let it shine. Just own the night like the 4th of July"
I absolutely hate blogging when I don't have pictures to post at the same time, but oh well. The camera is downstairs and I'm too worn out to go down there. sorry!
Yesterday I took Kaleb by myself to see his GI doctor. The reason I added in there that I was by myself is because this is the first appointment where we didn't both go. I'm not upset about that, I know these are going to be happening more often now that I go back to work on FRIDAY (ewww). Kaleb is a really high needs baby and that makes appointments alone very hard. Kaleb began screaming as soon as we walked in the door. The secretary made a comment about Kaleb not being happy today, made a sad face, and then closed the window to the desk so she didn't have to hear it. I was early so I decided to go ahead and feed him, but of course the nurse came early to get us. I get up, with a baby laying in my arms, I put the bottle against my chin to hold it in his mouth all while pushing the stroller as well. The nurse asks if I need help, of course I say I'm just fine [dumb idea]. A few seconds later Kaleb spits the bottle out and spits formula all over my face. The nurse looked disgusted and said, "Ohhh my". Clearly she didn't have children. I've realized that after two children we have lost all sense of humility. At an appointment last week we were in a waiting room of MANY families, we thought Kaleb pooped so Dennis picked him up and held his butt to his nose for quite a while. I just remember thinking we would have never done that with Nolan but when you're a parent you understand those things and I even feel a connection with other parents when I see them doing odd things like that in public.
Back to the appointment. After Kaleb spit on me, I realized he also had a pretty huge shit in his pants. [Great]. The nurse told me I could change him in the room and when I did she looked grossed out. Yep she definitely doesn't have kids. Then she went to measure his head and got grossed out by the dry skin on his head and asked what it was and if the pediatrician had seen it. I just thought it was cradle cap so of course I got freaked out that some nurse is showing concern over this [what the hell is on my baby's head??]. When the doctor came in he said, "Oh it looks like Kaleb has some cradle cap, do this, this, and that and it will get rid of it for good". Well if there was any doubt that the nurse didn't have children, now we know for sure she doesn't. I would probably be willing to bet she doesn't even have a nursing degree either.
The doctor did some things to Kaleb and said he thinks that he has anal stenosis. I am so tired of hearing about some type of stenosis or another. Stenosis basically means something is constricted. That would then cause pain when trying to poop. Great! I have an answer! The doctor sent us straight over to a pediatric surgeon to have a procedure done (called "dilating"). I just knew it would be positive, we would get our answer, and fix it. No such luck. After a painful procedure for Kaleb and traumatizing for me (having to watch that...yuck) the surgeon said he doesn't think Kaleb has anal stenosis. Damn you. I wanted to slap him. He had a small concern that maybe he couldn't find it so we are being sent to get an ultrasound of Kaleb's ass, which I guess will be next week? Even though we didn't find anal stenosis right away he did manage to tell me Kaleb has an umbilical hernia and fluid around his left testicle. Thanks doc. I came here for ONE purpose and now you are telling me there are even more problems with my poor baby. Not to mention he also looked sort of frustrated that our cardiologist isn't downtown next door to the children's hospital. He feels that all of our doctors should be in the same area. Most of them are, but that's the NICU's doing when they referred us to this cardiac doctor, which I'm pretty sure still sends kids to the children's hospital for any surgeries needed. On top of everything else this surgeon told me my son has plagiocephaly (flatness to his skull) and torticolis and told me how to treat those conditions. Thanks...I already know.
The only enjoyable experience that I had at the surgeon's office was being in the waiting room with a couple and their 6 week old baby. The dad was completely annoying but I made a mommy connection. I pulled out our pampers diaper holder thingy ma-bob (I'm sure that's the correct name for it) and the other mommy said "Oh hunny look she has our diaper holder thingy ma-bob". Oh my goodness! We have the same diaper holder thingy ma-bob...instant connection! I could tell they were new parents because they had humility. Their daughter kept crapping and they had about a 10 minute debate about where they should change her diaper. "Should we ask for the bathroom?" "Should we go out to the car?" "There's a private little room attached to the waiting room we could do it there". "Who's going to change her??" They decided on the private little room next to the waiting room which was open and I could hear the dad talking so loudly about his daughters poop and farting. If it were me I probably would have just changed Kaleb's diaper on one of those chairs or the table holding the magazines in the middle of the waiting room, it would have been an excellent changing table. They were nice though. We talked about having the same carriers and other random parent things.
Lets talk about Pompe's disease now...alright? You should ask me what the results of Kaleb's blood test were. Guess what? I don't know! They were supposed to come in on Monday, I've called daily to our genetic counselor with no return call. Last night Dennis emailed her and what do you know...she emailed us back this morning. She said there was some issue with insurance so now we won't get the results back until NEXT Monday. Well that's nice, do you think you could have called us to tell us that? This isn't like a blood test to see what your iron levels are. Sort of important. I've even been having nightmares about the results of the test (2 exactly), it's totally messing with my mind.
On top of everything else I'm still having issues with anemia and severe hot flashes. I'm embarrassed to go out in public because I'm going to be sweating and people are going to think I'm weird. I went shopping last weekend and at the register I had a hot flash, I was sure the cashier thought I had somehow stolen something or had some type of shenanigans going on. I've had hot flashes since the day I came back from the hospital. I told my OB about it so he tested my thyroid, yet it's normal. It's not normal to wake up with your pillow SOAKED every morning. I normally have to turn my pillow several times throughout the night because one side will get completely wet so I have to turn it over (yeah...gross...so what?). I can't wear my newly colored hair down anymore because it gets completely soaked in a 15 minute period, so gross. And I am so pissed. What the hell is going on with me? Not to mention the anemia crap is getting worse. I almost needed a blood transfusion in the hospital and my levels haven't gotten much better even with iron supplements. And now I'm having other issues that make anemia even worse, takes me back to right before my Endo surgery in 2005. I called my nurse this morning, her voice mail she has 48 hours to call people back. Screw that. Call me back! I get dizzy often and really shaky. I have no clue what's going on with me, I know I need to take care of myself but it is so hard to do with a toddler and a newborn who is not only colicky but has so many medical appointments. I do workout on my Wii Fit a couple times a week and I try to eat as healthy as I can but it's still really hard.
Sorry for all of the "blah-ness" in today's post...just going through a lot I guess. I know we are doing everything we can for Kaleb and doing the best that we know how to at this point in time. Oh and sorry for the few random cuss words...it feels like a good day to cuss. :)
Some good news....
I have lost 36 pounds since I had Kaleb, just 8 weeks ago!