Wow, now that it is finally cold enough, I feel normal typing that. For a while there, I wasn't sure if it was Christmas time or Easter?? Anyway, tonight I type Season's Greetings with confidence, especially since we have built the first fire of the winter in our fireplace tonight. What am I doing in here typing to you guys? Just kidding, you deserve an update and some pictures, some of you have been hounding me, and you know who you are :) So, I'll get on with it.
What is new:
- Charlotte's blood pressure didn't come down on it's own, and we started her on some medication to help it out. (Atenolol) We are currently in the process of running more lab work to determine a cause...still unknown
- Speech therapy starts next week
- Recent weight & height (today) 15# 4oz. 27"
- Her NICU 1 yr. follow-up was today...more on that later
- She is getting a new cousin in July... CONGRATS to her Aunt Sara & Uncle Nathan
- Mommy is working 3 jobs now!!
- Daddy successfully changed his flat tire on the way to work today
- She kisses the character's faces in her books
- Plays Peek-a-boo (although she covers her head instead of her eyes)
- Can Clap!!
- Pulls up
- Crawls everywhere!
Here is Charlotte helping us with the Christmas decorations last weekend. These are the little trees we put up and of course she got to help put the star on top.
These pictures are just for fun. They were some of my favorites from last December. What a silly girl she was even then. You almost can't tell that those pictures are of her. She has changed so much.
Chris also found this article today about Sensory Integration on CNN. Here is the link. http://www.time.com/time/magazine/article/0,9171,1689216,00.html
And finally, more on the NICU follow-up today. First of all, I must say that her neurologist, Dr. Mantovani, did us a world of good today, and I am so greatful to have him on our team of Doctors. He spent about 30 min. talking and most importantly, LISTENING to us today. I appreciate his point of view, his honesty, and his encouragement very much. After her evaluation with her therapists, they determined that she is the stage of an 8 month old for gross motor skills, and the stage of a 10 month old for her cognitive skills. She is doing well, but has mild/moderate delays in both areas. To us, those are just numbers. He says overall, he feels that HER progress is great. So, she is delayed, but she is progressing, and he made sure to tell us that it could be much worse, given the significant brain malformation that challenges her. He discussed the possiblity of CDG with us today, and also expressed his thoughts related to the cause of her brain malformation and other problems. He also feels that her problems are genetic and that there is a gene mutation in the two of us that has caused her problems. Ultimately, a 25% chance of recurrence, which we knew. But, it is nice to know that he and our geneticist are on the same page. We also talked about Charlotte's size, and recent stall in growth. Everyone thought she would bulk up after her heart surgery, but it just hasn't happened. To put it in perspective, the day she had surgery, she weighed 14#. The day we left the hospital after surgery, she was 13# 13 oz. Today, nearly 3 months later, she was only 15# 4oz. We just didn't get that surge in growth that was expected. So what do we do? We are currently doing everything we can, but he told us today, that even that may not be enough. We knew that she wasn't growing as well, and even before her NICU follow-up today, I had scheduled her for an appointment with her GI Dr. to check her out again. Ultimately, what we may be face with is a feeding tube. This decision is far from being made, but we have to be realistic about the path and course that she is following. We cannot force feed her, and the stress that she senses from us during feedings isn't good for her either. It is a daily battle, and even though we are doing our best, we still clearly do not have the upper hand. She see's her GI Dr. on the 11th and we will keep everyone posted on what we are recommended to do next. I am not sure what the future holds, but I know in my heart that her not growing well is not ok with me. As much as Chris and I do not want a feeding tube, we want her to have what she needs more, and that will drive our decision.
Please keep us in your prayers as daily we feel we do not know the answers. I know I am constantly searching my heart and soul and praying daily for knowledge and understanding when it comes to Charlotte. But please, help me be patient too.