Friday, December 25, 2009
Another whirlwind Christmas day, all the festivities leading up to Christmas and then getting ready for the day are so busy. Hopefully the next few days we will be able to slow down and take in all that we have done and what we have received. We as usual we spent the day with my parents, my brave grandparents who are both 91 years old and my brother and his family. We took Elizabeth to Christmas Eve mass; she looked so grown up holding the hymn book pretending to sing with the rest of us. When we got to the church Elizabeth told me she could see Jesus' name and when I looked at what she was looking at it said Christ Elizabeth is into spelling these days and she thought Jesus was spelled Chesus as that is how she pronounces it.
Surprisingly Elizabeth did not wake up until almost 8:00 on Christmas day and as soon as her eyes were open the squealing began. Elizabeth's most coveted gift from Santa was 'Rocky the Robot Dump Truck', she has spent all day loading him up and talking to him. Elizabeth also got another typical girl gift; a lava spewing volcano for her dinosaurs. I characterize Elizabeth's taste as eclectic as she gets equally excited about lip gloss and nail polish.
We hope everyone had a Merry Christmas and were able to enjoy some time with their families.
Thursday, December 17, 2009
We really cannot believe that Elizabeth is now 5 years old, 5 seems so old. The past couple of days prior to her birthday have been pretty emotional for me as I am reminded what hell we were going through 5 years ago. The past couple days I have been having these unexpected teary moments when I see a pregnant woman or when I look at Elizabeth and remember how far she has come. It was a pretty scary time going in to labour so early; we really did not know if we would ever be able to bring her home and what she would be like if she survived. I also became very sick while in labour as the medication used to stop labour caused heart damage. I quickly began having chest pain and difficulties breathing and for awhile I was pretty scared for my health. Poor Daddy did not know what to do he would run to see Elizabeth and then accompany me to all the testing I was going through.
Fast forward to today and we can say we are beyond blessed to have such a wonderful little girl who has overcome so many obstacles. The most amazing thing about Elizabeth is her personality; she is loving, caring, empathic, she never complains or tantrums and always thinks about others. She is so patient, through all the long appointments and therapy she never complains or resists, she works hard and does what is asked of her. She definitely is tenacious and can be quite mischievous when we see that twinkle in her eye we know she is is up to trouble. Elizabeth is so resilient, the numerous times she falls and crashes in day she always gets up, brushes herself off and keeps going.
Elizabeth has a love for all creatures, when she sees a spider she declares how cute he is and wants to keep him. She continues to love playing with her dinosaurs and loves learning more about them. She also has a girly side; she loves dresses and tights, loves playing My Little Pony, Little Pet Shop and is becoming fond of her dolls.
Elizabeth has celebrated many achievements this year; she is drawing some pretty recognizable things, she is printing most letters of the alphabet, her cutting is amazing, she is reading small words, counting to 30, counting objects to 10, she is getting herself dressed with minimal assistance, she is walking further, riding her adaptive bike, eating more foods, eating with utensils, she can walk distances, she is stepping up small curbs, she is initiating play with others and is playing more appropriately. I am sure I have missed many other accomplishments but this list is pretty impressive for us.
Elizabeth continues to have a very busy agenda but we attribute all that she does with her successes. Her typical agenda includes horseback riding, swimming, gymnastics, speech therapy, physiotherapy, yoga and all her homework that we work on at home. We also attribute her new physical gains with the CME Medek that she has done in the past, we are taking a break presently and will think about another block.
Elizabeth did not want a birthday party this year and instead chose to go to Great Wolf Lodge for a pre-birthday weekend. Her best friend Owen and his family came and the two of them did not separate for a moment while away. We did have a small family gathering tonight and Elizabeth helped decorate her pink polka dotted My Little Pony cake as that is how she wanted her birthday cake. Of course it would not be a birthday without Elizabeth getting sick so we spent the morning at the clinic getting her back on her puffers for her crappy chest and will continue with her puffers in hopes to keep the P-word away.
Happy Birthday Elizabeth, we love you very much, we are the luckiest parents.
Monday, December 14, 2009
To earn some extra money for Christmas shopping I have been working Saturdays giving the H1N1 vaccination (I apologize to all who had the achy arm it is not me but the vaccine that did it). While I have been at work Elizabeth has been spending Saturdays with Daddy, Daddy is a pretty busy guy from renovating our aging home to commuting 2-4hrs a day he does not have too much time to have fun with Elizabeth. Elizabeth and Daddy have been hard at work making the above creation out of paper mache and a coat hanger. Each Saturday they completed the next step until the finishing touches of Elizabeth's red finger prints. Her new pterodactyl hangs proudly in her room. Along with their masterpiece they have gotten even closer and have had a great time hanging out together.
Monday, December 07, 2009
There are no worries about Elizabeth not getting into the Christmas spirit, she is ready for the big day. Decorating the Christmas tree started her off and now she is is super excited. Elizabeth was so cute when she helped me decorate the tree, we had Christmas carols on the radio and she sang along to most of the music while placing ornaments on the tree. I love getting out our ornaments as so many of them mean so much to us. Elizabeth's first Christmas was in the NICU and she received some very special keepsakes from family and friends and each year we bring them out to put on the tree. After constant nagging and greeting Daddy at the door with the the outdoor lights she then supervised him as he hung them outside. Her baby bassinet has turned into Santa's sleigh and while donning her antlers she pulls/pushes her toys around singing Rudolph the Red Nosed Reindeer. She has also completed her Christmas list and of utmost importance is Rocky the Robot dump truck (it's a singing/dancing and joke telling dump truck). The first day of December we awoke to screams at 6:30 am telling us it is December and time to open her advent calender and eat chocolate. I love how excited she is about Christmas, I can't wait to see her Christmas morning.
Thursday, December 03, 2009
Raising a child with a disability makes one very aware of the little achievements in life. Small things that a parent of a 'normal' child would not even notice for us is worthy of a party. One of the recent things Elizabeth is doing is eating banana's, before we knew of Elizabeth's oral aversions and what to avoid bananas were a food that Elizabeth could not handle. A pureed banana was fine but one lump and the vomiting would begin. When Elizabeth was little just having her watch me mash a banana was worthy of gagging and running eyes. Even last year her father got her to have bite of his banana peanut butter sandwich and the hidden banana caused a stream of barf. Now Elizabeth is asking to eat a banana (only on her terms) and can eat it without even gagging. Elizabeth is also having an occasional bite of a potato which is also great. We love these little things as for us it is progress and a sign that some of her preemie issues can go away over time.
Sunday, November 22, 2009
Now that Elizabeth is completely medication free we have noticed an amazing improvement in her play skills. I love hearing her play now, she is so interactive and imaginative. I hide in the other room with my cup of tea and just listen to her talking to her toys, it makes me so happy. Previously she would need me to script and set up her play but now she is happy playing on her own and playing appropriately.
The other shocker for us is her new desire to play with dolls, Elizabeth normally plays with her dinosaurs, animals or My Little Pony. I brought up Elizabeth's old baby bath and basinette and Elizabeth daily bathes her dolls, changes them, feeds them and tucks them into their bed after a story. Last year Elizabeth would not even be in the room if a doll was looking in her direction, I would have to turn the dolls head so it was not looking at her. Now Elizabeth makes sure her babies are sleeping in her room with her and she loves pushing them in the baby stroller.
I was so amazed at her new interest that I took picture after picture of her and called everyone we know to tell them about her becoming a 'little Mommy'.
Elizabeth has had her first marriage proposal and declared her intention to marry a' handsome fella' as she calls him. The little boy who Elizabeth calls handsome is in Elizabeth's class and he himself is much like Elizabeth as he has a physical disability and has motor abilities are similar to Elizabeth. These two hit it off right away and frequently pair up during gross motor time to help each other out. Being the sweet little boy he is, he tries to help Elizabeth up the stairs holding her hand but it often turns into disaster as they are both unstable on their feet. He told the teacher his plans to marry Elizabeth so she told him he should ask her first, Elizabeth gladly accepted and the deal was sealed with some rocks which he gave her. Elizabeth has declared she will marry her prince when she is 16 (as well as getting her ears pierced).
I don't know who was more happier about their relationship his Mom, Elizabeth's teachers or myself. I hope these two remain friends when they get older as they have a bond and an understanding of each other that only they can comprehend.
Thursday, November 19, 2009
After meeting with her Developmental Pediatrician we agreed to Dystonia and I have accepted it as much as I can but now after meeting her Neurologist I am so confused and fed-up. We are getting near the date of when Elizabeth needs to be enrolled in school and a diagnosis is needed to get her services and support at school. I am so tired of dragging Elizabeth from hospital to hospital to see Specialists and I cannot forgive myself if I have to pin her down one more time while somebody pokes her. Elizabeth needs to be at home playing with her friends, playing with her toys, getting fresh air, eating at the table (we have so many meals in the car) and working on the areas where she has difficulty. Elizabeth should not be sitting in rush hour traffic watching her DVD's and be exposed to so many nasty hospital germs. I don't know what to do now, I will talk with her Developmental Pediatrician to see what she suggests, for now I am hiding from Genetics who have called again wanting to book us in. I will leave you with some pictures Elizabeth had taken while I was talking to her Dr., this was an especially fun day as we waited 3 hours to see this Doctor.
Sunday, November 15, 2009
After much procrastination I bit the bullet and took Elizabeth to her Ped's office for the H1N1 vaccination. I did not warn her ahead of time and once we walked in the room, she immediately figured out what was coming. Once done she stated 'oh that was easy that's not like blood work'. About 2 hours after the vaccination she started falling and complaining of tired legs. By the night she had raging high fevers and was unable to walk, stand or at times even sit up. I was getting pretty nervous as I had a bad reaction to the seasonal vaccine and cannot receive vaccines but by the next day in the afternoon she could walk holding your hand, she still had fevers but was taking fluids. Today she is back to herself again and full of mischief. I am happy to hear that she fits the age group that does not have to get a second dosage as I don't think I will ever get her an influenza vaccine again. I think this is a area where she is like me and is a bit sensitive to vaccines. As for the extreme regression in her motor skills her Developmental Pediatrician is still quite concerned that this happens, at least this time it was only for 2 days. It is hard when this happens as she is bigger and heavier. Toileting her is difficult as she can't even hold her weight to get her pants down and carrying her limp body around the house is much more difficult. Elizabeth should have her immunity by the end of the week and we are keeping our fingers crossed that she does not get exposed to the nasty H1N1 as I think it would really be hard on her.
Wednesday, November 11, 2009
Elizabeth's homework is endless; since she was a baby we always have something from each of her therapists to work on. Elizabeth rarely complains and somehow manges to find fun out the work she needs to do. We have been working hard with a new private Speech and language Pathologist to help with Elizabeth's articulation issues and she seems to be making some progress. We are working on her 's' sounds right now and she is able to put an s in front of a word when tactilely prompted. The new SLP uses the PROMPT method to cue Elizabeth and she responds well to it. One bit of homework which Elizabeth loves is blowing bubbles, I added some dish soap to her water and she was blowing a river of bubbles and squealing with giggles. She did drink a bit of the soapy water but she didn't mind.
Monday, November 09, 2009
I think the preemie profiles are a great way to teach the public the difficulties micro-preemies face both in NICU and once home. All too often the media portrays preemies who despite all odds have no longstanding effects from their prematurity. There are some micro-preemies who are relatively unscathed by their prematurity but the reality is that many micro-preemies will face life long issues related to being born too soon. Shannon a co-writer for Growing Your Baby has done a great job at getting the real stories out.
To see Elizabeth's profile and visit Growing Your Baby click here.
Thursday, November 05, 2009
Like every other parent I have been debating whether or not to get Elizabeth vaccinated for H1N1. After much thought and research we have think that vaccinating Elizabeth is less riskier than her getting H1N1. Elizabeth's lungs are getting better but I don't know how well they could handle H1N1. We have not gotten her vaccinated yet as the line ups are 6-8 hrs long, Elizabeth still has difficulty with line-ups and 6-8hrs waiting for a needle would require either her or myself being tranquilized. I am also waiting for the unadjuvented vaccine as well and the rumour is it should be out any day, we just might have to pull some strings to get it.
I have been talking with Elizabeth about a bad germ that is making people sick and the need for us to wash our hands to stay healthy and that a needle can keep her healthy. Elizabeth while getting dressed noticed a news story on TV regarding the H1N1 vaccination clinics and saw someone getting a needle. After watching the news clip she declared 'I am not getting that until I am 16'. I have not given her the heads up yet that she will be getting it before she is 16 but we will have that discussion very soon. Elizabeth also has decided that 16 will be a good age for getting her ears pierced and I do agree with that.
Monday, November 02, 2009
Elizabeth had a great Halloween as usual, it really is one of her favorite holiday's. This year she went trick or treating as a spider, she really wanted to be a dinosaur but we settled on a spider. At school she wore my sister's old pumpkin costume which was made by my Mom over 20 years ago. When getting dressed as a pumpkin Elizabeth was very adamant that her hair was to be placed in an 'elegant up do' and after many attempts she was happy with my work. Halloween night I have never seen Elizabeth's little legs run so fast, she ran up and down driveways on a never ending candy mission. Her fast feet brought her home with big bag of candy which we are all enjoying. Elizabeth also drew her own design on her pumpkin and did a pretty good job with it.
Wednesday, October 28, 2009
Elizabeth finished her swimming lessons and loved every minute. By watching these videos you can see how much she LOVES water. This group we did not go in the pool with her as she was supposed to have a buddy with her, the buddy never showed but she did pretty well without. It was a pretty anxious 30 minutes every week as you may see Elizabeth has NO sense of danger with water and can get a bit carried away. We had a couple close calls in the beginning and only once did they have to pull her from the bottom of the pool, she came up with a big smile and asked if she could do it again. Her teacher would keep the class close to me at the edge and I would remind her to keep on the step to wait her turn and grab her when she was floating (or sinking by). I constantly tell her Dr's how she is in constant motion and these clips are a good example. Elizabeth got her report card and has graduated to the next level which is pretty cool.
Thursday, October 22, 2009
Elizabeth is desperate to jump. She frequently is in awe of other children jumping and asks me why she cannot jump too. At her gymnastics it is somethings that we struggle with as a lot of the exercises involve jumping. She has a trampoline at home and she recently has began to jump on her trampoline while she is holding on to the bar. To see if we can help her with jumping independently we are using Ramon's philosophy 'train the brain' and using his CME Medek jumping exercise to teach her how to jump. The exercise mimics what her body would do if she is to jump and with enough repetitions she should have the skill mastered (I think it is 1500). The biggest obstacle for her being able to jump is her uncoordination which sends her limbs flying in all directions when she tries to jump, the CME exercises puts her body through the motions of jumping. She has been working hard with Dad at her jumping and today at gymnastics she jumped a couple of times and actually got her feet off the floor for a brief second. Her gymnastics coach and I were ecstatic and Elizabeth was so proud of herself.
Tuesday, October 20, 2009
Elizabeth had a busy Saturday. She had her 3rd MRI done and hopefully this will be the last. I really did not want her to have another one and did not feel comfortable having her under General Anesthesia again but after talking with her Developmental Pediatrician it was decided that we should have another one done. To recap; her first MRI was pretty normal which obviously did not make sense so her Neurologist sent us to Sick Kids to have one done and that one came back with changes. Her Neurologist despite Elizabeth always improving is concerned that the results from her 2nd MRI were indicative of a degenerative disorder therefore ordered another MRI. As there is still not a complete diagnosis for Elizabeth and a recent illness had her with extreme weakness an MRS was added to this MRI to rule out Metabolic conditions.
Elizabeth was so good during the whole procedure before she was sedated she told the Anesthetist knock knock jokes and was so cooperative with the Nurses. Elizabeth had me in tears when she asked if I would stay by her to protect her while she slept, I stayed until she was asleep and the Nurse got me as soon as she woke. Sick Kids were so good with her, they sedated her with a mask before inserting an IV and were able to do some needed bloodwork for me once she was asleep.
Next month we will see her Neurologist and the Metabolic team to discuss the results and I hope everything will be unchanged.
Elizabeth was pretty groggy and was not up to walking until later in the day so Gram's and I treated her to a free ride in her new wheels (shiny pink Ti-Lite wheelchair) and took her to her favorite mall for a quick treat. Elizabeth really wanted me to buy her the large mouth bass pillow but we settled for a Mickey Mouse snow globe instead, she also suckered me into buying a new dress for as well. Days like this she can get a lot out of me and as she gets older she may start to take advantage of this.
Thursday, October 15, 2009
Elizabeth's Resource Consultant met with us to discuss Elizabeth's progress in the JK program. Elizabeth is doing great; she is initiating play with some of the children, she is sitting her in new chair and completes her seat work independantly and is answering all the teachers questions correctly (even if it is not her turn). Elizabeth has decided to call herself Eliz and now signs her schoolwork with Eliz which I think is pretty smart as Elizabeth is such a long name to print.
One thing her RC mentioned was other children are noticing Elizabeth's differences and asking questions and how would we like her to respond. What do you say to other children without labeling Elizabeth and having her stigmatized? Do we talk about how she was tiny when she was born and needs more time to get stronger or do we say she is wobbly and needs extra help? Do we have this discussion with Elizabeth present and include her? I thought we had a couple years before these questions would begin.
Wednesday, October 14, 2009
The old Elizabeth is back, she is now Artane free and tons of fun. Until she has been weaned off I did not see how much of an impact it had made on her emotional state. She wakes up happy, she is laughing, her nervous clapping and hands in her mouth are gone and she has not had one meltdown. I forgot in such a short time how easy going and fun she can be. We do notice that her walking is more unsteady and her falling has increased which is unfortunate but we will take a happy, funny, wobbly child anytime over a nervous, emotional, steady child. We will see her Movement Disorder Neurologist soon but other than Deep Brain Stimulation I don't think there is much else we can do to improve her dystonia and at the present the idea of brain surgery is not something we are willing to try.
Elizabeth is now our resident comic and loves telling knock knock jokes and of course she is back to her mischievous ways, I have warned her teacher but I don't think she knows what is coming.
Monday, October 12, 2009
This weekend was our Thanksgiving Day long weekend. Elizabeth enjoyed an extra day with Daddy at home. We had a busy weekend; we went pumpkin picking, to a fall fair where Elizabeth watched the Demolition Derby which she thought was great fun and of course we had a turkey dinner with our family. Elizabeth worked really hard at making turkey place cards for everyone at the table, they turned out great and of course Elizabeth had fun getting messy with paint.
We hope everyone had a great weekend. We for sure are thankful for Elizabeth and all the joy that she brings us everyday.
Monday, October 05, 2009
We feel very strongly that CME Medek has enabled Elizabeth to walk independently, I am fairly certain that without CME Elizabeth would be using a walker. A couple of weeks ago we saw Elizabeth's Orthopedic Dr (the one who told me it was time to get Elizabeth an electric wheelchair to keep up with her friends) and she could not believe the progress Elizabeth has made in the past year HA HA.
Presently we are not doing CME at home as Elizabeth is walking quite well but we are ready for the next growth spurt to begin again to give her stability.
Checkout this clip.
Sunday, October 04, 2009
Labile was the word the Nurse used to describe the mountain of emotions Elizabeth is going through at the present. I have been playing phone tag with the Nurse this week to decide what to do with Elizabeth and the horrible side effects she is having from the Artane. It pretty much starts as soon as she wakes in the morning looks outside and cries out 'mama there is no sun, oh I am so sad' and it goes in waves throughout the day. Her once a week meltdowns have turned into 5-6 a day of inconsolable crying over fairly minuscule things and at times Elizabeth is so beside herself she just climbs back in her bed begging for a nap. We have tried to ride out the symptoms and there are days when she is better but as soon as we increase her dosage (as ordered weekly) it starts again. We are also finding she is beyond distracted, extremely spacey and quite constipated. For us to know if the Artane helps her dystonia we need to reach the highest dose and presently she is on 1/3 of the dose. We have noticed she is walking better and she is spending less time in her AFO's but is it the Atrane or is just her continuing to improve?
We cannot abruptly stop the Artane as it needs to be weaned slowly. We are hoping that in a couple weeks time she will be back to her old self as things have been pretty rough for her and us. We are so looking forward to having the the mischievous witty kid back.
Wednesday, September 30, 2009
Check out this book the chocolate chip chickpea cookies are yummy.
Sunday, September 27, 2009
One of our many favorite pastimes has come along with the cooler weather, Apple Picking. I have taken Elizabeth apple picking every year since she was a baby in the her baby carrier. We go to the same farm every year as it is has so much for the kids to do; from petting the animals, corn mazes, a giant sandbox, a field of outdoor toys and so many yummy sweets in the bakery. Each year we meet up with our friends and family, enjoy the outdoors and eat lots of apples. I also use the apple picking time to get Elizabeth to walk as she requires a bit of distraction to keep her walking distances. We have gone through 2 rounds of apples and they will definitely be used to make a yummy warm apple crisp on a cold fall day.
Monday, September 21, 2009
The brush is back, we hope just for a short time but for now it is needed. I don't know the reason maybe beginning school, her new medication, less time in the pool and a busier schedule but Elizabeth has been a bit 'off' lately. Her anxious behaviors are creeping up, she is humming a lot and clapping her hands, she is really needing tactile stimulation and is finding it in inappropriate ways (pebbles at the park, rubbing food on her face, rolling on her mega blocks and squishing her food). We have tried to give her extra time the bath and the sandbox but it did not meet her needs, her father thinks that not even a bed of nails would meet her current needs. We in the past have tried the 'wilbarger brushing technique' and found it kept Elizabeth calmer, less sensory seeking and less overexcited (and at school it kept her out of trouble). Elizabeth giggled when she saw the brush and savors every moment of the brushing and asks for more on her hands and feet. It is a bit of a time consuming method and we are only doing it in the morning to help her get through school but hopefully it will help her get over this rough patch.
Wednesday, September 16, 2009
I don't want to jinx this but Elizabeth has been off her stomach meds for 2 weeks. Since she came home from the hospital she has been on meds to control her reflux and I dreaded that she inherited my awful stomach and is succumbed to a life of reflux. We have had a couple of gags when she is hungry but that is pretty normal. We are still keeping the head of her bed up and I have have not heard one gag at night. I hope this will be the end of the reflux chapter and it is something we can cross off her list of diagnoses.
The exciting news for Elizabeth is that it was cold enough tonight for her to wear her new dinosaur pajama's. I have not let her wear them yet as it has been too warm. Each morning Elizabeth comes into our room naked (getting undressed is a new skill as well) dragging her pajama's stating 'Mom, brr it's cold in here I think I need my dinosaur pajama's'. I am sure there will be shrieks in the morning when she wakes up wearing her coveted pj's.
Tuesday, September 08, 2009
Summer once again has flown by. We feel quite cheated with the horrible weather we had as most of the summer it was rainy and cold leaving us only 2 weeks of real summer weather. We did manage to get in as much as we could; Elizabeth spent every spare second in her pool swimming, we went to a couple of amusement parks and Elizabeth being fearless loved every second of the thrilling rides, we spent 2 weeks at my parents trailer, Elizabeth played in her sandbox, she attended 2 weeks of performing art camp and we had a couple of pool parties with her friends from school.
Elizabeth over the summer has mastered bike riding and now can ride to our nearest park with her Dad or I chasing close behind. Elizabeth also is walking more in her regular runners and is needing her AFO's less for stability. Elizabeth's endurance has really increased as well and she can walk for longer periods now. Elizabeth now is also eating and occasional potato and banana without barfing which is really cool. After tons of work and playing 'go fish' Elizabeth is now able to make an 'f' sound without prompts.
Elizabeth and I were talking about our the bad weather this summer and she declared to me that soon we will have to go to Florida and this time we need to stay 10 days not 7, I am in full agreement.
Thursday, September 03, 2009
Elizabeth has started school and Mommy is a little excited (I am really excited about cleaning my house, I have great thoughts about a clean pantry, shiny floors and decluttered closets). She is still going to be at the same school as the last 2 years but this year will be in their JK program. We are sticking hard to our plans t hold her back as per her birth date she should be in SK. We feel very strongly for many reasons that she should be in JK and the additional year will give her some opportunities to keep up with her peers. There will be 8-10 kids in her class which I love.
She still will have her Resource Consultant with her to keep her on track and monitor her progress. We are waiting for a new OT to come and provide her with a special chair for her table top activities and a chair for the floor as well.
Elizabeth was pretty happy to go back to school and settled immediately to her new teacher and new peers. She chose her outfit for the first day as well and seeing she does not have any dinosaur clothes she chose butterfly's.
Monday, August 31, 2009
But I also have days where I hate what prematurity has done to Elizabeth and our family. Some days I can't handle cleaning up another spill. Some days I tell Elizabeth that at almost 4 years old she should stop and look for cars and begrudge not being able to take my eyes off her for a second. Some days I snap at her for digging herself into dirt and pebbles. Some days I roll my eyes when she breaks down in tears over something that is not important. Some days I hate that I have to stay with her for a class to keep her safe and encourage her to pay attention. Some days I just want her to go off and play and not have to worry about if she playing appropriately. Some days I want things to be easier. Some days I hate myself for snapping at her because it is not her fault that she does these things. Some days it is my fault that she is getting into things because I have not worked enough on her sensory/proprioceptive activities causing her to seek input. Some days I look at our unfinished home and want to scream. On most days I look longingly at other parents and wonder how it must be to not have to worry about how your child walks, talks, hears and plays. Some days I hate myself for feeling these angry thoughts. Some days as her mother I feel despaired, Elizabeth knows these days because she usually asks 'Mama are you happy?', I of course tell her I am so happy because I have her. We are so blessed to have her but some days it is a lot for me to handle.
Thursday, August 27, 2009
We started Elizabeth's trial of Artane to help with her dystonia. AS suggested by the Neurologist give at bedtime as it often causes drowsiness Ha. Elizabeth from 1:30 until the morning was awake. At first it was humorous as every couple of minutes we would hear 'Mum', "Mom', 'Momma', 'Mommy', Moooom' and then 'Mum'. I would go and try to settle her back down with tucking, her heating pad for her sore knee but she still was awake. In the middle of the night she explained 'mom my eyes are open they will not close'. Her going to the bathroom at 5:00 and falling in the toilet had us awake for the rest of the day. We are now giving her Artane in the afternoon and she is sleeping through the night again. I really need my sleep so I am thankful, I am not sure what we will do when she is to take the Artane 3 times a day, hopefully by then it will not keep her awake.
Sunday, August 23, 2009
We have found a good use for Elizabeth's old AFO's, her new water shoes. Elizabeth loves running through the water park but without her AFO's she is wobbly and gets knocked down easily. Elizabeth still startles and a blast of water causes her to startle and fall but with her AFO's on she is much more stable. We get a couple of odd stares but for me it is great I no longer have chase her through the water waiting to catch her if she falls. She can run around and I can stay dry, it is a fun time us both.
Monday, August 17, 2009
Social and play skills are still a concern for us so I am trying to spend time teaching Elizabeth how to play. Teaching appropriate play is difficult for me as I really do not know too much about appropriate play for a 4 year old. I have no difficulty working on Elizabeth's other PT, OT and speech goals as they are concrete; we have exercises, worksheets and tons of crafts to meet her goals. Teaching Elizabeth to play is just as important as her walking , speech, ability to print etc and it is something I often leave out. Elizabeth will go off on her own to play but I would not call it functional play (unless it is dinosaurs), in her play kitchen she will smash the dishes and make noise and her pet shop toys she will scatter around the house but it is not play that other children would join in on. After some research I found Lovaas' program and it encourages scripted play which hopefully can be faded over time. I am familiar with this program as it is used for children with Autism and for a short time I worked as a IBI therapist for children with Autism. Using his scripts we played restaurant and practiced serving each other meals. I began giving Elizabeth the key phrases and over time she is not needing prompting to stay and play appropriately. Of course Elizabeth would not be Elizabeth if she did not take time to be goofy.
Tuesday, August 11, 2009
Elizabeth finished her 2 week performance arts camp where she attends pre-school. Her group the Kinder-Campers participated in the end of camp play 'Toy Story'. Elizabeth loved camp and did well 5 mornings week and because it was at her pre-school the staff already knew her. She came home with tons of crafts, enjoyed dancing with the older campers and learned new songs.
I will admit I was not looking forward to the end of camp play as watching all the dancers is another reminder of things that Elizabeth will be unable to do. I had prepared myself for a teary time and hid in the back to wallow.
What I wasn't prepared was for how amazing Elizabeth was on stage. Her group came out twice once as sheep (if I remembered to press record you be able to view that video as well). The second dance the children were dressed as Aliens which Elizabeth loved of course. She was stomping her feet, moving her arms and following the actions of the others. I loved every minute of wathcing her and unfortunately my videotaping does not do justice.
Next year I will get a better video camera and arrive early to get a good spot. Next year I will also bring a bouquet for my amazing dancing daughter.
Monday, August 10, 2009
We once again enjoyed a wonderful week away at my parents trailer. The weather was somewhat cooperative considering this summers horrible weather. We spent lots of time at the beach, Elizabeth built castles, moats and just got dirty. Elizabeth still has her sensory needs and the sand is one of the best ways for her to get her 'fix' in. We have perfected the arrival and departure at the beach. Elizabeth is immersed as soon as she gets near the sand which is not the best for her AFO's, a quick grab and stripping of her shoes keep her AFO's relatively sand free. The departure involves rinsing her while holding her above the water (with a quick grab she will get into the mucky sand) and carrying her to the car as she will bury herself again if near the sand. This perfection requires 2 adults, fast reflexes and preparation.
Elizabeth has also developed a love for corn on the cob and now is eating it off the cob.
Of course it could not be a vacation without her best friend Owen coming to visit. Owen and Elizabeth were heard chatting in the bunk beds past their bedtime.
Friday, July 31, 2009
As per our last visit with Elizabeth's Movement Disorder Neurologist dystonia is the the new diagnosis. She feels that Elizabeth is not Ataxic at all or low tone but her movement difficulties are due to dystonia. Despite us thinking she is really improving she feels that Elizabeth is significantly impacted by dystonia. As the Sinimet made her worse she wants to try Artane, this medication has to be gradually increased and results may not be seen until optimal dosage (in 3 months), she feels that Artane may help alleviate some of her symptoms and improve her speech. She also feels that in the future we should think about Deep Brain Stimulation as it has shown to have amazing results with dystonia. I have read about DBS in the past but did not think it was offered in Canada but it is completed at Sick Kids and her Dr. thinks Elizabeth would be a very good candidate. The earliest DPS can be done is around 7 years which is good as it gives us lots of time to contemplate whether brain surgery is appropriate as it is something we can't even begin to think about. The Dr. feels that we have to address her dystonia as she will encounter bony changes to her spine and legs if not addressed. We do see changes to her Rt. knee and it is causing a fair amount of pain so we are seeing the Orthopedic Surgeon soon. We ended the appointment with spinal x-rays which were a bit humorous as it requires Elizabeth to stand still which is impossible even with 2 adults holding her still. Once again she milked a toy from me from the hospital bookstore as she so so good that I could not say no.