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.

On A Whim

It began as a casual discussion and ended up with a fun filled vacation with my parents and my sister Katy. We spent a week in Orlando and had a blast visiting Disney's parks and hanging out at a really nice resort. It was a bit cooler but the weather was so much warmer than the miserable damp cold here at home.
Elizabeth had planned our itinerary before we left and Gram's and Auntie Katy were dragged to Dinoland at Animal Kingdom, to ride the clam shell and see Nemo at Epcot, to ride as many rides as we could at Magic Kingdom and visit her favourite characters (Lightening McQueen, Mator and the Einsteins) at Hollywood Studios. With a letter from Elizabeth's physiotherapist we were able obtain a wheelchair pass for her stroller and did not need to wait in the long lines (I highly recommend this). Being able to take her stroller in the line was so helpful there was no way Elizabeth can walk and stand for prolonged periods amongst so many people without falling and getting hurt. Having the pass makes me feel that for once Elizabeth gets a break and they made such a big deal of her and even gave her some extra time with her beloved character Leo from the Little Einsteins.
We enjoyed some time at the pool at the resort and Elizabeth loved swimming and playing in the sand. Mommy got a trip to Target which is my favorite store I love all the deals there, the kids clothes are so cute and totally cheap. All in all it was great vacation I think we tired my parents out and my sister was not a fan of walking but it made her day when she was pulled on the stage during the High School Musical play. Disney is such a magical place we loved every minute.

Arts and Crafts

I love doing crafts and Elizabeth shares that love with me. Crafts are such a fun way to learn and practice her fine motor skills. We have been working on her printing with her OT using the Hand writing without Tears program, it is a great program it really makes learning fun. Elizabeth is printing about 10 letters on her own and worked hard at signing all her Valentines cards. Her drawing is great, when she concentrates she can draw some pretty recognizable pictures most often her house, spiders and cats. Her cutting is going great she is controlling her scissors easier, she still has a slight tremor and twitch in her hand that makes some things difficult. Using her new love of the Veggie Tales we frequent this site for all sorts of craft ideas like Bob the Tomato above.

We love winter

We do really love winter. Yes it can be miserably cold, the shoveling is endless (beyond endless lately) and it takes a good 20 minutes before the car warms up. There are so many fun things to do in the snow. Elizabeth loves winter or maybe I should say the snow. She loves snow and is trying to eat her way to China in our snowbanks. The pebbles at the park that feed her sensory needs have been replaced by snow, mountains and mountains of snow. Elizabeth is now crawling in the snow and takes advantage of her low position to eat as much snow as she can (see above picture). It is nice as this is the first year she is mobile in the snow and it is great exercise for her. When we can convince Elizabeth to abstain from her feasting we are tobogganing. Elizabeth is a daredevil going down the steep hills on her own, this is really amazing because at the beginning of the season she was still not sitting on her own in a sled. Elizabeth is also learning how to skate, Daddy has built her a rink in the backyard and she is doing well with her walker wandering on the ice. This weekend has been quite warm and much of the snow has melted but I am sure more is to come as winter is halfway through and I will still be yelling 'Elizabeth only eat the white snow'.

Argh!!!

Once again things did turn out as expected. We visited Elizabeth's Neurologist with her new MRI results and was hoping for a final diagnosis of Ataxic Cerebral Palsy with her new results. It did not go as planned, he does not feel she has CP and is still wanting to rule out other genetic and degenerative conditions. He feels that the changes in her 2nd MRI may be as a result of a degenerative condition and has taken her MRI to many colleagues for their opinion. I don't think he believes me when I told him that Elizabeth is improving with her balance, we are amazed by her continuing progress he just sees a very smart but wobbly girl. He also wonders if Elizabeth's symptoms are dystonic (varying tone) instead of Ataxia but one of her diagnostic signs does not meet the criteria of CP; when he elicits a response in her foot her toes point down (CP points up). He also is looking into a cerebellum disorder such as Joubert syndrome and is still questioning Frederich's Ataxia (but the lab had lost her blood so we have to do again). He is quite concerned and wants to help us but cannot come to a conclusion so we wait again. We will be seeing a Motor Disorders Neurologist at Sick Kids, he feels this Dr. can be the only one to help us and maybe offer treatment. We are still waiting to see Genetics and maybe they can help to come to a conclusion, our biggest concern is that this can be passed on to other children.
Good news her EMG was okay so it rules out a neuropathy and we don't have to do it again. Having needles stuck in her leg with electricity going through was not a good experience for Elizabeth or Mom it was quite painful for her. She is again on a waitlist for another sedated MRI to ensure there are no new changes.
We would love everything to be okay for Elizabeth but the reality it is not and we can handle that. It's the constant what if's and waiting for a diagnosis part that is getting a bit long, drawn out and not fun. Elizabeth should be at home playing not being tested for everything under the sun.