Wednesday, January 13, 2010
Well looking back Christmas was a blur. We a had wonderful time seeing family at all the different get togethers. The girls had a great time this year especially Maddie. She was so excited for anything related to Christmas or Santa and is beginning to understand the story of the baby Jesus. Christmas eve was a ball with all of the McConville cousins together. The kids did a lot of playing, running and joyous screaming and the adults did a lot of laughing and relaxing, it was a fun time. This year was the first time ever that we did not have a large family dinner on Christmas day. It was nice, we did Santa in the morning with the girls at our house and then Gma Marlys and Gpa Dwain came over along with Cassie, Dominic and Luccio for a brunch and gift opening. Cassie and Dominic announced the exciting news of expecting a baby in early August. It’s going to be hard not seeing her belly grow in person, but hopefully she’ll send frequent emails with pictures and they should be moving back to MN in May. I’m also making another trip out to NYC in March with Sara and Molly so I’ll be able to see her when she’s around 5 months. I’m excited for Cassie and Dominic’s return home and the birth of the first baby. I’ve always imagined living near one another, having babies and watching our children grow and play together.
Maddie’s enjoying preschool. She’s becoming a little artist. She drew portraits of Gpa Tom and Gma Autumn and Gpa Dwain and Gma Marlys that I thought we pretty good if I do say so myself. She drew Gpa Tom and Gpa Dwains hair perfectly, barely there, ha! Everyday she does a little better at writing her name and we’re working hard on letter and number recognition. We soon need to decide what preschool program she should attend next fall, 2 days a week (5 hrs/wk) or 3 days a week (6 hrs/wk). We’ll probably have her try T-ball this summer or dance class again.
Hazel has earned herself another specialist because of her thyroid levels. We’ll be meeting with a Pediatric Endocrinologist because of suspected hypothyroidism. This could be one of the reasons for Hazel’s poor weight gain and another cause to her low muscle tone. I’m guessing when we see the endocrinologist and if hypothyroidism in confirmed then she’ll be put on Synthroid. Doctor’s appointments and lab draws have become horrendous for Hazel. I think Hazel and Mom and Dad already have post traumatic stress disorder regarding any clinic visits. The minute Hazel is taken into a small room with an unfamiliar person even if Mom and Dad are with she becomes hysterical and fights everything. She thinks she's either going to get a shot or get poked for labs. She really needs something for anxiety if not for doctors appointment at least for lab draws. I have a feeling these next couple of years are going to be really difficult for her and for us regarding doctors visits, let’s pray she remains healthy and doesn’t need many. I’m not looking forward to the rest of the Synagis injections appointments
Hazel's sedated echo and renal ultrasound went well. Dr.Baker was happy with how her SVAS repair looked and her pulmonary artery pressures are improving. She still has nephrocalcinosis (calcium build up in her kidneys) which we have to watch for the development of possible kidney stones but the overall health of her kidneys are good.
She’s becoming an honest to goodness walker, walking about 60% and crawling or walking on her knees 40%. She’s saying different sounds and is able to point to her hair, mouth and nose when asked where they are. She was evaluated by district 11 to see what services she will need this year. A speech therapist will be added and her teacher, PT and OT will continue. As we thought she is very behind in language development. Our goal for her is to increase her vocal and verbalization and for her to express her needs and for her to understand us. Right now Hazel has weekly home visits with Lindsay (IEP teacher) and when she turns 3 next October she will begin to receive services outside of our home at one the district class locations and I’ll either need to drive her there or a bus will pick her up in front of our home. She’ll go to class at the minimum 3 days a week for 2 hours a time and up to 5 days a week depending on the services she needs. To be honest I’m rather intimated of her getting on the bus when she’s 3, but if she goes to school 5 days a week I can’t imagine driving her there all the time and trying to get Maddie to school and run errands and get things done around the house.
It’s only going to get busier and busier as they get older isn’t it. Anyways I’m going to enjoy my nice day of ECFE in the morning and nothing planned other than hanging with my girls for the rest of the day while I can.
Friday, December 11, 2009
Thursday, December 10, 2009
Hazel is undergoing a sedated echo and kidney ultrasound at Childrens Hospital tomorrow at 1:45. She will be having the procedure in short stay so she will have close access to vital sign monitoring and breathing support if necessary. Basically, she will be next to the OR and PICU in case an "event" occurs. She reacted poorly after her heart surgery and Dr. Baker does not want to take chances. She might have had malignant hyperthermia, but it was not officially diagnosed. This will give us a really good indication of where she is at health wise and we will develop a plan moving forward. We do not expect to get results tomorrow. The nephrologist said that if her results warranted it, we might do a CT angiogram. She officially does not like doctors, or nurses. I don't think she realizes Mommy is a nurse and if she did, I bet she would cry. I guess she is sick of getting squeezed, poked, and measured. It took four people to get her blood drawn at her nephrology appt. Wish us luck tomorrow and lets hope for good results.