A New Path (It better be the right one)

We finally met with the Movement Disorder Specialist and she has sent us on another path in terms of a diagnosis for Elizabeth; dystonia. She feels Elizabeth is not Ataxic and that her movements and difficulty walking are due to dystonia. I am on the fence about the diagnosis, I do see some dystonic movements with certain activities and she seems to still have her startle reflex (when she is in a busy crowd walking is hard as she gets startled and falls), she can stiffen up when she is trying to do a difficult task and she frequently cries with leg cramps but I still see her as Ataxic. The Dr. suggests a trial of Levodopa/Carbidopa to see if her dystonia improves as there is a type of dystonia (dopa-responsive dsytonia) that is completely cured with this drug. The new medication will increase the dopamine levels in her brain and hopefully help with her movements, this medication is commonly used to treat Parkinson's. We are hopeful that this medication will at least help with her startling and making her walking more controlled if there is improvement it should be noticeable in the next week or two.

Here is a video of Elizabeth pre Levo-Dopa with Lisa one her favourite physoitherapsits. I would love to hear what other people think of her walking as I have never seen a child with Dystonia walk independanlty.

Rule Breaker

One of our cardinal rules at home is for Elizabeth to leave the plants alone (no digging in the mud, no pulling off the leaves to feed to her animals and to not pull on the branches). Elizabeth has a bit of difficulty with this rule as dirt is a major temptation (still some sensory seeking) for her. So while I was at work Elizabeth convinced Grams that it really was okay to play with the plants and she had great fun arranging her beloved dinosaurs amongst the branches. Elizabeth will not own up to the mud on the floor as it was T-Rex and not her who was digging for bones. The dinosaurs got a good cleaning, as usual they jumped in the bath with her to play in the bubbles.

AVT Graduate

Elizabeth has officially been discharged from Auditory Verbal Therapy (AVT). Elizabeth began AVT when she diagnosed with a hearing impairment (Auditory Neuropathy) at 6months old. AVT teaches children how to listen, process verbal language and how to speak. We have always credited AVT for Elizabeth's amazing language and conversation skills. The best part of AVT is that Elizabeth learned through play and exploration. Making volcanoes (as above) was a way to teach Elizabeth to follow a sequence of steps and reiterate what would happen next and now it is also another way Elizabeth can get muck with her beloved dinosaurs. Elizabeth loved AVT, her therapist's were amazing dedicated professionals whose creativity allowed Elizabeth to learn while she was having fun, it was not work for her.
We knew that her being discharged was inevitable as her listening skills are amazing and as per her last assessment she scored 75% in her receptive language and 98% in her expressive vocabulary. The only saddening part of her latest assessment was her articulation as it scored 6%. This 6% saddens me as Elizabeth has so much to say but many people cannot understand her. Elizabeth is now being followed by a Speech Pathologist for a 9 week block to work on her articulation which is great. Of course the downside is due to her age she will be discharged from the preschool service and will probably receive 10 session a year which is pitiful considering her articulation difficulties. We have a great health insurance plan that covers a lot of her needs but it will only cover 2 1/2 sessions of speech a year (not very helpful).
After great discussions with her ENT and Audiologist we have decided to try an FM Unit. With Elizabeth's hearing loss being unique we do not know how it impairs her ability to hear in all situations. We do notice that in noisy environments she does not hear and we have to touch her to get her attention and speak to her face to face. An FM unit can help her to hear a primary speaker in noisy environments (school, gymnastics, family gatherings, car etc). My fear is that her articulation is not only related to her poor oral motor skills and that some of her articulation difficulties are due to the fact that she cannot hear everything. We will continue to have her hearing checked every 4 months to monitor her closely.
We will definitely miss AVT but it is great that she has done so well and has graduated.

Happy Easter

We have had a great Easter weekend filled with time with our families and too much sugar (in all forms - chocolate, candies, cakes, ice cream, jewelry, eggs). Elizabeth loved her Easter egg hunt and did well with the clues that the Easter Bunny had left. Elizabeth has had a couple of practice rounds to get her ready for the real hunt, eggs hunts can cover so many of her therapy goals so we do them often (I am such a multi-tasker we climb, reach, follow clues, knee walk, use rhyming words etc). By 8:00 am this morning Elizabeth was flying on a sugar high as she had to taste all of the treats left by the Easter Bunny. Her favorite was a chocolate triceratops and after biting his head and his tail off and looking through she declared it a telescope. Elizabeth also was totally excited to go to her favorite play farm to attend their Easter egg hunt. Elizabeth's cousin Madison came with us and the two had fun hunting for eggs and getting their faces painted. We have followed our yearly tradition of taking Elizabeth's picture with her Easter basket, she has come a long way from her first Easter (click here). We hope everyone had a great Easter.

Spring is coming

Spring is finally coming, we are getting some warmer days and buds are forming on the trees. We were able to spend a spring day at a local Maple Syrup festival with our friends Olivia and Avery. The girls had tons of fun tasting maple syrup, learning how maple syrup is made, going on a wagon ride and eating pancakes, sausages with maple syrup. We are looking forward to many more warmer days but of course the forecast tomorrow is snow.

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.