Celebrations

Over the weekend we celebrated Elizabeth's 4 years of being home. It is a pretty special day for us so we celebrated by baking and decorating mini cakes and having a Birthday tea party. I have been explaining a lot to Elizabeth how she was born and she loves hearing me tell her what she sounded like when she was born, I will never forget that moment when we heard her cry it was so tiny and resembled the sound of a baby kitten it was that little 'mew' that told us that everything would be okay and she was going to be alright. The other story Elizabeth loves hearing is how everyday Mommy and Daddy would come for cuddles and she was so tiny that we could tuck her in our shirts and when she wiggled her feet it felt like a butterfly had landed. These 4 years have flown by and already I see her turning into a little girl and see her maturing, we are so lucky to have her with us.

Puddles Here We Come

Elizabeth is totally excited, she can now stomp in the puddles. Every year we try to find something for Elizabeth to wear on her feet to play in the puddles and nothing fits over her AFO's. We have tried boots without her AFO's but her feet come out and she ends up socking feet in the puddles (which she enjoys even more). Elizabeth and Daddy on a Walmart expedition found her ducky boots which fit over her AFO's. Now Elizabeth can muck in the puddles as much as she likes, we just need some rain.

'That Mom'

I should be used to this by now but it still perturbs me. Everything for Elizabeth requires a fight, nothing falls easily into place, it is like we are the first ones to travel this road. Accessing services and support in the 21st century should be without major obstacles. It seems like every developmental step requires a fight to get to the next level, enrolling Elizabeth in a pre-school was beyond difficult. I hate having to be 'that Mom' but I need to be to ensure Elizabeth is receiving what she requires in terms of therapy and medical care. What is worse is I am 'that Mom' to my colleagues as well, as they are Elizabeth's therapists. I love all Elizabeth's therapists they are all great to Elizabeth but in order to ensure she receives therapy I have to call managers, leave firm voice mails and be the mom that everyone avoids. What upsets me is after I resort to these methods appointments magically appear and we are scheduled again. There is no seamless care and in our declining economic state services will continue to dwindle. Invisible borders constantly come up impeding what she needs. Our arguments have only just began with the school board regarding her 2011 start date for kindergarten and us wanting to hold her back. I hate that they already know us and we are not there yet. I do apologize to her therapists, Dr.'s, teachers and now the principle of her new school that we are causing them extra work but really this should be seamless it is 2009. It makes me tired and deprives me of sleep, a lot of sleep.

Progression

Elizabeth loves helping in the kitchen. One of our culinary delicacies is banana bread, even with Mommy sneaking in flax seed and using whole wheat flour it really is delectable even better with all the chocolate chips. When Elizabeth's oral aversions started rearing I began including her with food preparation to reduce her sensory issues. We have videos of Elizabeth sitting in her high chair gagging, retching and her eyes watering while I mashed the banana's in front of her. Fast forward to today and here is Elizabeth mashing banana's joyfully. Elizabeth has even tried tasting a banana and not vomited which is supercool, she normally will tell everyone that she is allergic to banana's because they make her barf. It is days like today that make think hat everything will be alright and she is getting better in her own time.

The Reflux Front

We found this picture the other day and had a good laugh, she was so darn cute. Reflux is still an issue here and it is beyond the point of her growing out of it as promised by her Dr's. We met with a new GI Dr. who actually listened to my concerns. We have changed her medication to Prevacid which comes in pill form, this makes things so much easier as her last med was compounded monthly by the pharmacy and had to be kept cool which made travelling more tricky and the monthly dispensing fees are gone as well. The Dr. would have liked to try her on a motility agent but because of her irregular heartrate she cannot be placed on one which leads us to the only real option Fundoplication. As most CP/Preemie Mom's know a Fundo is not an option, to surgically tie her stomach to prevent her from vomiting is not an option for us, she has not had regular bouts of pneumonia to make us think she is aspirating. The Prevacid initially calmed her stomach but now she is spending a lot of her nights gagging and retching in her sleep, I am often in her room repositioning her uphill and on her stomach but she slides down and gags and retches. She even vomited in her sleep one night and I didn't even notice until the morning which is scary. So we are back to the drawing board and have changed her meal times, eliminated her nighttime glass of milk and avoid all fatty foods in the pm. I know if we go back to the Dr. it will be to increase her meds again and a talk about a Fundo so we will try Mommy's way for a bit. One really good thing is that she has only vomited twice this year which is a total record for her.

Thoughts

Lately I am always wondering what do parents of 'normal' children do. It is a question that I am always wanting to know. I try to imagine what I would do differently if Elizabeth was not given all the challenges she faces. It is pretty accurate to say that the majority of Elizabeth's waking hours are spent on reaching her developmental goals. We do not spend all day drilling her and making her work but we do try to add all her goals into her daily life and through play. During the day there is no TV we do crafts, baking, obstacle courses, her Medek exercises, her AVT goals, play games, play with her toys, sensory activities and read. Along with this she is at physio, OT, gymnastics, riding, swimming and of course her endless Dr.'s appointments.
I watch the mothers at her gymnastics go upstairs together to watch their children as I stay with her class to help Elizabeth. I wonder what do they do at home with their children and what they talk about as a group? I don't begrudge the time we spend with Elizabeth as she is so much fun to be with and everything we do will help with her independence. I just can't help wondering how things would be different. Would I lay back and read a book while she was playing? Would Ivan and I have a different social circle and allow time for ourselves? Would we leave her with a babysitter? Would I still be full time at work? Would Elizabeth be in daycare full time? Would a cold be mere inconvenience, would I even worry about it? Would she have siblings?
What I do know is that with Elizabeth we never take a moment or milestone for granted, the simplicities of sitting in a chair, using a fork, chewing, climbing on the couch and her telling me I 'am the best momma womma there is' will never be missed they are cherished even more.