I stole this from another CF Mom's blog. I thought that the words tell something that I feel just never know how to put into words. It's funny how whenever the hard times in life hit that you really do find out who your friends are.
I stole this from another CF mommy who blogs and thought that it is so true :)
Hope that you enjoy!
You Know You've Been Dealing With CF Too Long When ....
- You've used puppets, toys, sung, danced, pleaded and generally made a fool out of yourself all in an effort to get your child to eat.
- You've stockpiled enough applesauce to start your own factory
- You find loose enzyme beads literally everywhere, the car, your clothes, -the ceiling (not joking)
- You count more calories than sheep
- You add salt to everything and use butter as a general cooking base even when a recipe doesn't call for it
- You panic when your child sneezes
- Your child coughs and you immediately chant "Xopenex four times a day!"
- You check websites daily for news about a cure
- Your house has more medications than the pharmacy
- You've actually found yourself explaining a medication to the pharmacist instead of the other way around
- You've considered dying all your child's clothes yellow to hide the vitamin stains
- Your medical bills are looking more and more like the national debt
-You've prayed for your child to be fat
-You have a strong urge to smack whiny parents of "normal" kids
-You've actually found yourself exclaiming angrily in the grocery store upon discovering extra-cheesy mac doesn't have more calories than regular (sadly true)
-You know what the poopie dance is, and you've done it
-You've had long involved discussions with other parents about poop
-You've started referring to everything in acronyms (CPT, PA, MRSA...)
-You're seriously considering a medical degree, cause at this point you know more than most doctors
-You've reduced a complete stranger to tears by yelling at them not to touch the baby
-You can describe the hospital's daily menu in exact detail
-Purel and Lysol are your new best friends
-You've considered life-long quarantine for your child
-You've told someone off for coughing near you or your child
-You have multiple doctors on speed dial
-You refer to CPT as your child's nightly beating
-The pediatrician sees you more often than their own staff
-You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis
-You've cried over half a pound
-Your child comes with an instruction manual if you leave them with a sitter
-You've forgotten what normal is
-You find empty enzyme capsules in your pockets
-Your child wears a neb mask more easily than they do a hat
-Your child has started trying to do their own CPT
-You own every Baby Einstein video made and are eagerly awaiting more just for something different
-You've forgotten to put meds in the nebulizer and actually let it run several minutes before discovering the problem
-Your after clinic routine at home looks like a hazmat excercise
Today Luke's PICC is coming out. I am so happy because this means he can have a real bath. No more sponge baths for the Luke man! I am bored sitting here waiting for the nurse to come. She was supposed to be here around 9:30 but still hasn't shown. *sigh, I guess she'll come sometime today. Hopefully it won't be when I am in the middle of teaching piano, btw- I have quite a few new students.
This is what Luke thinks about getting his PICC out :)
So today I turned 15 weeks and I decided to post a belly pic. Believe me, it's not much. I am barely showing and I think that I just look like a fat lady with a pooch. I didn't have the cutest belly with Luke and I don't think that I am going to have a cute belly with this little one. 
I think my belly is super pointy. It was like that with Luke too.
I still don't have the test results back yet but I will post as soon as I know about the CF results. This wait is killing me!
I stumbled on this video at the blog phoenixsfight.blogspot.com. It is a great reminder as to why organ donation is so amazing.
Also, just reminding all the Illinoians that organ donations laws have changed and even though you registered awhile ago you may need to register again. Please think about giving some family the most amazing gift they could receive.
What do you guys think of my new layout? Dan spent quite a bit of time putting it together and I really like how it turned out.
Anyways, have a great Sunday and even though I won't be in the service tomorrow because I am still contagious with the c.diff, I will be worshiping with you in my home.
I thought that I would post a few pictures from the other night. This was right after an antibiotic infusion and Luke was a little out of it. I really wish that I had a better camera though and I am hoping to get a better one in the next few months.
This one is my favorite one!
Today I realized something about Cystic Fibrosis that is a blessing and a curse. Luke looks totally normal.
I know that may sound odd that it would be a bad thing but here is the reason it is sorta irritating. People are nosy and they ask questions about things. Things like why my son would be wearing what looks like a cast. There are other things too, like being stared at when I am at a restaurant giving enzymes, or when I wipe down the shopping cart for 10 minutes to make sure that he gets no icky germs, and I even get them when I tell him "Good cough buddy, keep em coming". I feel like people judge some of the odd things we do, such as feeding him lots of chocolate and also loading his food with butter and salt. I have seen the looks that mothers have given me and I know what they are thinking, "That mother is KILLING her child"! What they don't realize is that I am helping him live longer.
That is why I feel it can be a curse. I feel I have to explain some of my parenting techniques and also why he is so small for a 17 month old. People just don't get it sometimes and it's only because they are uninformed.
However, all of this got me to thinking. How many times have I judged a mother because she is giving her baby a bottle and the child is old enough to find it himself. Or what about the time I judged a mother for allowing her child to eat off of other peoples plates. I have done these things myself now and I have a reason for both! I am not going to get into them now but I should have never judged people!
I encourage you to try and put yourself into others people shoes this week. When we see people we only see a still frame of their life. We have no clue what the circumstances of their life are. They may have a perfectly logical reason for what their child is doing.
So my challenge is this- He who has no sins, cast the first stone.
Put yourself in their shoes, you may see life differently.
Yeah! We are home today. I feel like I have so much to do and we were only gone for six days this time. Luke is still a little symptomatic but nothing horrible. The c.diff is still a little iffy but we are hoping that will be cleared up within the week. His poops are quite interesting. His coughs are getting interesting too! Very juicy, if you know what I mean.
We have put Luke onto a different iv schedule than what he was on in the hospital and it seems to work out okay. The only problem was that I went to bed at 9pm thinking that I would wake up for his midnight infusion and go back to bed but after it was done I couldn't fall asleep again! I think that from now on we are going to have to stay up until it is done. I may even push it up just a tad so that I can go to bed at midnight instead of 12:30 when it would be done.
We are having a problem with Walgreens though. It seems that they never have anything in stock and it's a pretty important antibiotic that they can't give us. I am starting to think that we need to change pharmacies.
I am off to clean my house and wash my clothes. I need to get everything done before noon so that I can take a nap this afternoon :) Growing a baby makes you sleepy.
Here's a pic of Lukie in the hospital. He was on sedation meds right here so is a little loopy :)
Tonight I am sitting in my kitchen and actually blogging. The house is not quite clean but is superly duperly quiet. When I walked in this evening I couldn't realize what was missing. Did Dan take something off the wall? Is the Christmas tree still there (unfortunately, yup)? Did something get stolen? I walked down the hallway and looked in the bedrooms and that is when I realized what was missing from our house. One little 17 month old toddler.
Tonight Dan is in the hospital with Luke were he is staying for a tune-up. He also contracted C.diff so that was causing him to be in quite a bit of pain. I took him for a normal appt on Tuesday but we decided to admit him instead of waiting for him to get uber sick. I kinda appreciate the dr doing that. My weak stomach couldn't take much more vomit from him.
This stay hasn't been too bad. I think the difference is that Luke can get down and play instead of having to stay in the crib the whole time. Walking makes all the difference! I am not saying that I enjoy this, I am just saying that it is not a nightmare like it normally is.
The first day he was in I cried. We had to wait in a little, tiny room for about 5 hours because the hospital was full and there were no beds. Luke screamed all 5 hours. Not fun. He was in so much pain from the c.diff tearing through his intestines that he wasn't happy being held. Also, they thought that he was going to have to be sedated that day so he wasn't allowed to eat or drink anything. He didn't like that!
We did get a room though and settled in for the night. He slept in my arms the first night and to say that I hated it would be a lie. Although I barely got any sleep it was precious to me. He has never liked snuggling so the fact that he snuggled with me the whole night brought tears to my eyes. I am only going to have a little boy for a short time. I want to enjoy that time with him.
He has now been in the hospital for 4 days and it looks like he is coming home on iv's on Sunday or Monday. Nice and short. I like these stays. I am just praying that he doesn't pull his PICC out. That is not cool and believe me, it's happened before.
One side note though, Luke was by a speech therapist as having Food Sensory Aversion. I don't have the energy to explain it but I promise to in the near future.
Did you check out my pregnancy ticker? I am officially 13 weeks today! I don't know why that is so exciting for me but it is.
I am off to the Dr's with Luke. We had a major snowstorm last night so I am hoping that doesn't make our trip too long. I am just praying for no traffic, however, I am leaving with plenty of time to spare :) I really dislike being late, it's not cool.
I am so excited! After 3 days without a computer I have one again! Well, I technically had one but I didn't have a monitor so getting onto the said computer wouldn't exactly work. It's been nice to spend the last 20 minutes catching up on all that has happened on the world wide web. I didn't really miss much. However, I do have a clean house.
Tomorrow Luke has a clinic appt. I am not super excited because he has been acting sick lately and the dr said to pack a bag in case she wants to hospitalize him. She has said this before but this time I am sorta thinking he needs a short stay. He is throwing up, coughing, having mucousy poops and overall grouchy. I feel like he rarely is happy anymore. It's been a rough week or so. The antibiotics that the dr put him on don't seem to be doing anything so I am thinking he may need something different. We have been doing treatments 4 times a day but that also doesn't seem to be helping.
This is just one of the ups and downs of CF that we face all the time. One day Luke will seem fine and the next, he will be coughing and sick. I understand that it comes with the territory so I am resigned to the fact. I just need to be prepared for anything. Unfortunately, I am not the most flexible person. I am praying that I will gain flexibility this coming year and throughout my life. Having Luke has taught me so many things. Mainly, that we never know what the future holds even though in our heads we have it planned out so perfectly. I tend to freak out when Luke is sick and call my mom and sisters. I think that since I don't know perfectly what is going on that it scares me even more than the boogey man would.
BTW- I am still waiting for the test results from my CVS. I am hoping to have the preliminary results by the end of this week. We shall see....
I had my CVS today and everything seems to be okay. No spotting and the cramping has already stopped. I should have the results within the next few weeks. I have heard several different time frames so I am just going to try and relax and wait. Not the easiest thing for me but I can handle it.
The bad news is that I was sick yesterday and today Dan and Luke are sick. Luke just vomited all over his sheets and Dan is trying his best not to :( Both of them are in bed so I am using this time to catch up on some things that needed done.
Thursday I have another dr's appt but this will be a normal midwife appt. I am excited because it is my first 'real' appt.
Here's the little bean! He/she was very active during the whole thing today. I had never seen Luke that active in the womb. Hoping that doesn't mean I will have another crazy child, yikes!
Some people have asked me what the CVS is. I found this information and thought that I would pass it on. I will be having this tomorrow around 1:30 pm so be thinking about me. I am sorta nervous!
http://en.wikipedia.org/wiki/Chorionic_villus_sampling
Hope that you learn something :)
