Friday, December 26, 2008

Merry Christmas!!!

My blog wished for Christmas that I would quit neglecting it- wish granted. We have been so busy getting ready for Christmas that my poor blog fell to the bottom of the priority list. Things have not been boring around here for sure. Carly had her Christmas program at school and she was delighted to have been chosen to be one of the angels. Obviously, her halo had to be worn a bit crooked. Santa came to our house a day early since Kenneth was on duty Christmas day. He brought Carly the Rose Petal Cottage which she keeps calling the Rose Petal College. She asked me how I got Santa to come a day early. I explained to her that I had Santa's phone number and had called and made a special request. She immediately wanted the phone number. I told her she couldn't have it because she would be calling him all of the time. She assured me she wouldn't because, "No I wouldn't mama, I would call the elves." Too smart that girl!! Again, my mother of the year nomination was rejected... Carly had been complaining about her ear hurting. She had tubes put in about 3 years ago and I had my mom look and it seemed one of her tubes had fallen out. Carly kept complaining that when she stuck her finger in ear it made a funny noise so I politely told her to quit sticking her finger in her ear. It was one weird complaint after another about her ear but I just assumed she was adjusting to noise and pressure changes without the tube. Wrong- the school called on Tuesday to let me know she had green drainage coming from her ear. The pain was gone though so I guess the eardrum ruptured. She's on antibiotics and on the mend now. Oops, I guess I should have listened to her. Anna is doing well. Her walking is more running now and she is becoming more and more opinionated and ornery. She looks so sweet and has such a soft, sweet voice but she is a little twerp. She has become quite good at shaking her head no and then laughing after she does whatever it was she shook her head no about because she knew she wasn't supposed to do it. We had another little scare with her. She had a little abdominal mass thing that Dr Klein felt needed to have an ultrasound done on it. We did the ultrasound and it found some area of enhancement on her liver which could have meant terrible things. We went to a surgeon at Cooks and found that it was some weird herniated piece of fat. It does not require surgical repair at this point and we are so thankful for that. Yet another thing that is just weird with Anna, not bad, just weird. I hope you all had a very Merry Christmas. Hopefully you are relaxing today and enjoying all of your new toys. I know we have a bunch of toys that may "mysteriously" loose their batteries within the next few days. I have to go into work at 11 today. I was so happy to get that phone call at 5 this am as I was struggling to get out of bed that I could come in at 11, what an awesome after Christmas gift...

Tuesday, December 9, 2008

If You Have Not

If you have not:
1. Been in bed for 14 weeks while pregnant
2. Wondered if you and/or your child would survive
3. Known from the beginning of your child's life something was a bit "off"
4. Been told and caught completely off guard at a GI appointment that you might ought to see a neurologist
5. Had your child be diagnosed with a condition that is anybody's best guess why it really happened and told that although cerebral palsy doesn't get worse it never goes away
6. Been told that you r child's potential will only be known years down the road and to not get your hopes up too much but to hope for the best
7. Had to have your child tested for dreaded genetic disorders because the doctors agree something else is wrong but cannot put their finger on it and wait 6-8 weeks for results
8. Had to pay more than you could afford to feed your child because of allergies
9. Known that feeding your child those allergic foods causes much distress and sharing that with others only to have them feed your child those foods right under your nose
10. Had to answer questions on a daily basis about why your child is so skinny and have people look at you like "feed her"
11. Had to explain to a 3 year old why her sister is needing extra help
12. Been so happy to see your child progress so far in so little time
13. Had to make decisions about when to draw the line with Dr. appointments and when to keep searching for more answers
14. Been told your child has a cyst in her brain but "not to worry about it"
15. Had to deal with rude people who are constantly questioning your parenting skills

If you have not done these things, you have not walked in my shoes. You need not judge me and how I have chosen to take care of my children. It might not be the way you would have done it but hey, it's not your life. I try to be positive. I realize I am blessed. That being said, I did not make these diagnoses, I have just tried my best to help Anna overcome them and feel I have done a pretty damn good job. Perhaps a pat on the back instead of a snide remark would be nice, if that's not too much to ask...

Thursday, December 4, 2008


Happy Birthday Anna! Her first birthday was yesterday but we had her party last Sunday. It was low key and quite enjoyable. It was fun to watch Anna smear her icing all over everything. I know my parents got some great pictures and I'll try to post them later when I get access to them. The ones above are from our camera and pretty much suck but oh well. I absolutely cannot believe my baby is one. This past year has been a whirlwind and by far the most bittersweet year of my life. My reflections on the past year brought smiles and tears and I am not sure which I did more of. I cannot believe all we have been though over the past year. I cannot believe the progress that we have made and I cannot believe how far we still have to go. I still cannot believe my baby has CP- some days it is acceptable and other days it just really pisses me off and then other days I still deny it. I guess the diagnosis doesn't really matter in light of the fact that she is doing so well but it is still there and not ever going away. I look at my baby and I think she is so beautiful and looks so normal and then I wonder if that's just because I am her mom. I wonder if when other people look at her if they can tell something is wrong or if she looks "normal" to them. I worked yesterday since i didn't really think Anna would know it was her birthday and we had already celebrated. I took care of a woman in DIC which basically means she was bleeding uncontrollably internally and externally due to a problem with her clotting factors. I spent the entire day in her room and at the end of my shift had transfused 12 liters of blood products to her. Her story is long and sad and although she made it through yesterday, she died at about 10:45 this morning. It broke my heart to see this woman's husband, he just kept saying how he didn't know how to live without her. Long story short- this woman went in to have a tumor removed from her ovary and then ended up with a total hysterectomy and then went into DIC and then died. So as I tried to keep my thoughts focused on my patient I also kept thinking of Anna and Carly and having the realization that DIC happens when the clotting cascade fails and in HELLP syndrome which is a variant of preeclampsia that is what happens too. I saw this lady bleed out before my eyes and as I looked at her oozing from every orifice lying there in puddles of her own blood which was dripping off of the bed onto the floor and she was too unstable to move I realized more than ever why I cannot ever have another baby. Life is short. This woman went in for a small procedure and was supposed to go home later that night or the next morning and ended up leaving in a body bag. I have seen a lot of bad things in my career and I have seen things that will forever be etched into my mind but this one tops them all. I have so much more I want to say but my bed just keeps yelling my name over and over and I have learned that it does not like to be ignored...