Thursday, January 27, 2011

Where did the time go?

Can't believe it was Thanksgiving since our last post. Hard to believe that was 2 months ago already. With everything going on for Jennifer and I we sometimes don't know what day of the week it is. Well, since the last post a lot has changed. For the good I might add. Lily-an finished her series of casts and had surgery on December 6th at Childrens in Milwaukee. She also had tube put back in that day since the first set had came out. They only lasted 6 months or so. Not really sure on that. The surgery was to help lengthen the achilles tendon. This is a very simple and short procedure. Her incision was about 1/4 long and that was it. Unfortunately, she had a cast put back on and she had to have it on 4 weeks. This was to allow the tendon to heal properly. Between both procedures she was gone about an hour. We were able to leave for home around noon that day. She recovered well and had no side effect. We started to notice some changes in her regarding her speech. It was long after the tubes that she started to vocalize more. She seemed much more expressive. Now that it has been 2 months since they were done there is a night and day difference in her. She is much more aware of her surroundings. She is very expressive if she is frustrated. She "talks" more. A lot of voice inflection. The tubes must have helped her hear. She is making more consonants now. We think her speech is coming along nicely. He left foot looks great. It has a much wider range of motion and the surgery was successful according the the doctor. She is working on crawling and so bad want to move around more. She get around quite well as it is but she know she can do it better. I think crawling is around the corner. We are noticing that when we try to help her, you can feel her legs wanting to move but her arms don't want to yet. She is getting stronger and her arms and shoulders are doing much better. She is determined. Sometimes I wish I could have her determination. She is strong willed that's for sure. Right now we have therapy 5 times a week and every other week, she has one more session where the coordinator comes and checks up on Lily-an's progress. They all have said she is doing very good and progressing very well. Once that cast came off at the beginning of January, she really started to move around. The cast kind of kept her in one spot making it difficult to move but once it was off, watch out. He did gain a little weight so that is good. Today she weighed in at 21 lbs 5 oz. She has gained about a lb since surgery so that is good. She eats like a horse and will eat about anything. Her chewing is getting better. Probably in part to all but one of her teeth coming in. We really don't think about it, but her muscles are weak also in her mouth, jaw, her tongue, cheeks, etc. They also need to build strength to help with chewing and talking. She is chewing food nicely and her muscles are building. You can tell when she gets tired of chewing. She eats whatever Jen and I eat. That is good. We don't have to mush it up any more. We just cut it into pieces that are the right size for her now. Easier for us. We still have to feed her but we have been working on that too. She now takes the spoon and will bring it to her mouth and feed herself. We just help guide it to her mouth. If we don't, she plays with the spoon and drops it. Than Oscar, our dog, gets to have some treats! He doesn't complain. He waits patiently under her chair. She hold her cup now and will drink out of it then put it back down. We help her hold it and bring it to her mouth and she does the rest. There have been so many changes the last few months it is hard to keep track of them all. Everyday is an adventure and we love it. Yes, we are tired a lot more. Sleep is precious for us. Lily-an will sleep 10-12 hours a night. Sometimes wake up at 4am laughing and playing, but give her a bottle and she is soon out, sometimes. We think we figured that out, she is hungry. We feed her a snack before bed and that seems to have worked. I don't know of many children, let alone, anyone else that wakes up with a smile on her face and is laughing and giggling. That is what we get to experience everyday. What a joy it is to share in her happiness. That makes everything worth it. No matter how much we are tired, sick, rundown, whatever, that smile and laughter makes everything else go away. Yes, we are busy. Most of our day is consumed and disappears because of what we are doing with Lily-an, therapy, drs. appts., whatever, but, we will not trade it for the world. We don't have a lot of time to ourselves or really with each other anymore, but that is life and that is what happens when children come into the picture. Especially one that has some needs and you have to be there for her all the time. I don't take anything for granted anymore and I doubt Jennifer doesn't either. Our life is our daughter in a way. We love doing it. Parenting is a responsibility and we can't take it lightly. We would not go back to our lives before we got Lily-an. We both say that. Life was good before, but empty in away. It isn't empty anymore. We do almost everything together as a family. Both of us are with her during her therapy, unless one of us in on an EMS run. We schedule our days around Lily-an and what is going on with her. It is so much fun watching her grow. She is blossoming in so many ways. It won't be long and she will be crawling and moving about. That will be sooner than later. Looking back over the previous year and everything that has happened, going on, whatever it may be has been a whirlwind. Days go by fast and time does disappear. But, we wouldn't change it for the world or want it any other way. (maybe the next post will be sooner than 2 months) God bless everyone, keep us in your prayers for strength, wisdom, serenity. God is good and we owe everything to him. He keeps us grounded and gives us strength when we need it. Most of all, He is working through Lily-an. She brings joy and happiness to everyone she meets!