Hello Friends, just wanted to give you an update on Lucy. She is 7 months old today and weighs 11 and a half pounds. The results of her EEG came back and she doesn't have Hypsarrythmia anymore which is great news! That stuff is horrible, causes development delays and so forth. Her brain patterns are really abnormal though, which means she is very pron to having seizures. She was having discharges in the brain that were showing signs of it. Her head all of a sudden jumped from 0 to 50 percentile on the growth chart so we are concerned she has fluid building up in her head. The doctor was going to get back with me about giving her a CT or MRI. I had to put the NG tube back in her nose last night. The past few days her sucking ability was steadily declining. The doctor thinks it's her body normalizing itself after being on the steroids. Also, a possibility if the swelling is causing her to not want to eat either. Last weekend Lucy started smiling again :). I can't get her to smile, she just does it on her own. I have heard a little chuckles out of her too. I guess yesterday she made laughing sounds when Lucas and Dawson were laughing with one another. Lucy must have want to join in too, which I could've seen that.
How many appointments will Lucy been to the Month of April. A whopping 14 appointments, luckily most of those are at my home. She has seen her Pediatrician, Eye Specialist, Occupational Therapist, Physical Therapist, Geneticist, EEG Lab, Nurse Visit, Coordinator Visit. Ah, Im so tired... :) I am really glad she gets all of this help. The Physical Therapist is coming Monday and she will have equipment for Lucy to use to help her sit up. Lucy has been holding her head up more lately which is encouraging. Im sure it feels like a big Bowling Bowl she is trying to move around. Lucy has something called CVI (Cortical Visual Impairment). Meaning structuraly her eyes were formed right. Something in the brain is not triggering the eyes like it should be. Most the time CVI can improve, which is good news. Glasses won't help her, just therapy. She won't be able to see fully, and we will have to help her the best we can. It's like she can see sometimes and other times she can't track at all. We will keep working with her, and luckily the eye specialist comes out 3 times a month to help us.
As a family we are doing well considering everything we have been through. I was upset when I had to put the tube in last night but oh well. It's expected to happen, at least she likes to eat baby food and rice cereal. Maybe when she is old enough she will take a cup? I am hoping to get tested sometime in the near future if I carry this chromosome anomaly. I need to know because if I am it's a 50/50 chance it will happen which is a huge number. If not, then this happening again is no bigger odds than anyone else. I don't plan on having more kids for a long while, but it would be good to know in advance to think of options for the future. Lucy is such a strong little girl, she give us courage through the hard days. When we have good days I really soak it in, might as well right? Because a bad one is going to come and it will make that much more grateful for those good days.
During General Conference, we were all hanging out around the TV and on our bed. I was starting to feel a little sleepy, and then I hear the words Chromosome Abnormality from the TV. Lucas nudges me and our eyes glue on the screen. Listening to Elder Rasband's talk about his grandson was so humbling for us. We both started sobbing, Lucas held me while we just bawled. My phone starts vibrating from Family and Friends asking me if I was seeing this. Every night I would pray to Heavenly Father letting me know I am not alone. Just to give me some sort of sign that he is there watching over us. This talk could have came out any other time, but it was given at that moment I needed it the most. As my sister Maryanne said to me he is aware of what is going on with us. I have never felt such a peace and calm in my whole life. It helped me not hold anger and to just let it go and be at peace. One day will be different from the next, but my baby is here and thats what matters. She has such a strong spirit, and people tell us that. Sometimes they start to cry when they are around her, because you can feel it. Maybe it's the Angels that surround her, because they do. We all can feel them when we are with her.
I know most of you aren't quite sure of what Lucy's condition means. Neither do we really, we won't know how she is mentally until she gets older. She obviously had delays, but she is trying her best. And a lot of it is due to her low muscle tone, it's a workout for her doing things that come so easy for us. What is awesome though is that the Hypsaryythmia is gone. The Neurologist said that usually it doesn't come back :). That is something worth celebrating I think. Bring out the Sparkling Cider! ;)
