Elizabeth Ann

Our Little Man

2012-01-18T14:32:00.005-05:00

Our little man came into this world yelling and he seems to still be doing so. He is a man who knows what he wants and he wants it NOW. Slowly he is calming down and beginning to trust me and believe that I really won't starve him or drop him and he can occasionally be seen flashing a smile and cooing now. Despite his ferocious yell Elizabeth adores him and wants to spend every second with him (except when he yells). She loves to make a play gym for him in her room and he really likes being in her room (which is good because he dislikes our room, the family room and his room he tolerates). He is calm with her and will often fall asleep in her arms and she was the only one he would take a soother from.

Already he/we have sorted out a schedule and he has specific times for naps, bedtime and playtime which is really nice.

This little man may not stay too little as he tipped the scales at 9.2 lbs on his 1 month visit. He is developing some very chubby rolls that are so sweet. He continues to nurse and the 2 of us often have disagreements about how often to eat and I have yet to win these battles as his hourly evening feelings can be tiresome.

He gave us a big scare on New Years day and did what his sister was so good at doing and turned a very scary shade of blue/gray thankfully Mommy was home as Daddy was a bit panicked and after some hard whacks his color returned. We will be seeing a Pediatrician tomorrow for this episode and also he has had a few vomiting out of nose/choking episodes if jostled too much and I now am wondering if some of his crying is not just temperament it is that he is uncomfortable. Holding him upright for 20-30 minutes after he eats keeps him comfortable and with limited spitting up but it is leaving me with not getting anything accomplished and very sore arms. I have been getting quite creative with the baby carrier in the mornings when I need to get Elizabeth to school I can do almost everything while wearing him after he has eaten or while he eats, as I have told Elizabeth sometimes there will be desperate times.

She's 7

2012-01-04T21:49:00.001-05:00

This post is a bit late as things are a bit busy here ( new baby, Christmas, Elizabeth home from school and getting all the gifts for babies in the NICU have kept me hopping) but somewhere in the madness Elizabeth turned 7 years old. It is pretty crazy as I still can remember her being born and being so tiny. Fast forward to 7 and she is quick witted, funny, a bit sassy and now great big sister. She is growing like a weed and at some point tipped the scales at 50lbs which now I am thinking the opposite from how to fatten her up but now how to maintain her weight to avoid her gaining too much. I think it will only be a short while before she is bigger than me.

She is doing so well at school this is such a better year; she loves science, religion and math. My worries of her finding math difficult are laid to rest as she completing small addition problems now and is counting by 2's, 10's etc. She is reading small chapter books and rarely has problems reading difficult words, her favorite books are Junie B Jones and of course any Dino book.

I can't say she has a true friend yet but she has lots of friends who she does play with. Social skills continue to be a challenge but the support needed is less now. She has started Sparkes and I hope that will be another place where she can socialize and meet other girls.

Her walking is not as good as it used to be; a huge growth spurt, not going to weekly PT as I was on bedrest and me not being able to do as many physical activities with her during my pregnancy I think has contributed to her falling more and tiring out. Now that I am on my feet we are back to walking and getting out.

In swimming class she is now jumping in the deep end and swimming back to the wall on her own with no floaties (I couldn'twatch when I was pregnant as I would have contractions) so that is amazing. I think by the summer she should not need her floaties.

We are working on her being more independent at home as I cannot always help her now and I think there are things she should be more active in; with lots of prompting she was able to put her snowsuit on and before her new AFO's could put on her smaller pair, in the morning she now gets dressed on her own, brushes her teeth and comes down for breakfast with less prompts and now even holds her brother while I gets dressed.

We are pretty proud of her and her determination is noticed by everyone who meets her.

Wishing you all Merry Christmas

2011-12-26T21:16:00.001-05:00

Finally Pictures and a Name

2011-12-12T14:22:00.005-05:00

Finally pictures of our little man Harrison Charlie. Elizabeth has been very set on naming him Charlie and might continue to do so but we have chosen Harrison as his first name. We have been home for a week now which has been great, we did need to stay a bit longer as his weight dropped below 11% but once my milk came him there is no problem with weight gain as he is now over his birth weight. He so far is a very easy baby during the day as he sleeps all day, I just wake him to feed every 2 hrs. Nighttime is a bit different we are not sure if he has a bit of reflux or am I eating some foods that cause him grief. He has a bit of a tendency to scream from 9:00pm to 3:00am which makes for a long night but I think it is getting better as we are figuring him out. Elizabeth gave a us a very quick crash course on infant reflux when she came home so we are armed to deal with his upset tummy.

Elizabeth really is enjoying him and is so helpful and sweet. She just has a hard time when he cries and she often ends up in tears too.

We are so immensly blessed to have him as part of our family.

He's Here

2011-12-03T19:38:00.003-05:00

Our baby boy arrived safely Thursday morning. After having some back pain Wednesday night that would not go away we decided to go get checked out. I spent the early early hours of Thursday morning in labour with the OB resident vacillating between sending me home and or admitting me and once my OB came in at 8:00 am she finalized the decision and I was whisked off to the OR in 10 minutes flat. Knowing all the disasters that happened with Elizabeth when I laboured with her they took extra care this time and all went smoothly.

Our little baby boy arrived at 8:45 weighing 6 lbs 2 oz, we have still to agree on a name but have some idea as to what we both like. The lungs on this little guy are great he has been kicked out of the nursery for being disruptive and now continues his nightly parties with me in our room. This is a huge difference as Elizabeth never had enough reserve to cry or felt hungry, this fella wants be fed NOW.

We are having a bit of a prolonged stay as he keeps losing weight, for now we have had to add a bit of formula but hope we can continue with the plan to nurse.

Elizabeth has been in a couple of times but has a bit of a cold so I am keeping her at a distance which is hard as we are never apart. She can't wait to have him at home and hopefully that will happen tomorrow.

Reptile Party

2011-11-30T15:50:00.002-05:00

We decided to have Elizabeth's birthday party early just in case the little guy plans to appear (and so far this is not the case). Elizabeth has wanted since last year for her birthday party to have a reptile party so we found a great place that you could go and visit the reptiles (having them at my house is not really a thought I wanted to consider). This party was everything she had hoped for; holding tarantula's, snakes, lizards and other small creatures was definitely to her liking. All her friends seemed to enjoy themselves and weren't too leery of these creatures.

Every time I looked at Elizabeth during her party she was beaming and it was great to see her with her classmates who all really enjoy being with her and sharing her odd interests.

In lieu of gifts this year we asked her friends to bring a small gift for a baby in the NICU as this year we want to continue the tradition and bring gifts for the babies in the NICU this Christmas. Elizabeth did luck out and received some pretty cool gifts for herself too; the dino poop, dino cookie cutters and dino crafts were certainly not unappreciated by her.

Booked for his Arrival

2011-11-22T12:03:00.003-05:00

I am officially booked for my c-section. Depending on the day I wonder if I will get that far but now being 35 weeks I can relax knowing that the little guy is pretty safe to come at anytime now. I'd say I can now breathe easy but that is pretty hard to do seeing I am short of breath all the time now.

Pictures of me will be hard to find now as I am entering the 'not pretty' phase with 30 plus pounds on a 5 foot body I am looking a bit puffy and my ankles are definitely missing.

December 12 is the day I am booked for a c-section. This is a bit creepy for me as the day I should be going home is the day I came to the hospital 7 years ago in preterm labour with Elizabeth.

My c-section with Elizabeth was a not a typical incision as she was too far down and distressed so a t-incision was needed. This t-incision makes one high risk for rupture therefore I cannot go into labour at all and must get to the hospital right away. It is a bit unnerving as I contract all the time and am not too close to the high risk hospital. My contractions have not gotten worse but I can easily have a handful in an hour. I do feel a bit like a ticking time bomb so I don't go too far anymore without a chaperone.

So for now I am trying to get Christmas shopping done online before the little guy appears and hope to hang around for Elizabeth's birthday party this weekend. Elizabeth has been a great help getting things ready for the baby and asked if she can come to the Operating room to see the little dude being born; as much as she would really enjoy it I think she can come a bit later.

I'm Different

2011-11-16T15:53:00.003-05:00

"I'm different" Elizabeth said to me as we were getting ready to leave a friends birthday party at a gymnastic center. "I can't walk right, that's why I'm different' she clarified. Me being totally caught off guard by her candid comment and a bit emotional due to my pregnancy lost my breath. What do you say to your child as your heart is breaking? I know it is not my fault that she was born so early but hearing her say that makes me feel I have failed her in so many ways. She is different she will always be different from her friends and everything will always be a struggle for her and I hate that she doesn't get a break from her life and all the work she does.

So for now we give her all the love, praise and acceptance we can and hope that she continues to have a positive outlook on life and her fierce will to be independent.

Belly Update

2011-11-04T12:00:00.002-04:00

I can't believe it I am now 33 weeks pregnant, the little guy will soon be bigger than his sister was when she came home. I continue to feel great; I won't deny I have most of the aches, pains and discomforts of a third trimester Mom but I will not complain. I no longer have to have the invasive ultrasounds to measure cervical length which is lovely but it is unnerving as I have no idea what my cervix is doing and seeing that I am at a teaching hospital I have not offered myself for a peek with residents or the OB that was covering for my normal one. I have one more week of the Progesterone.

I have increased my activity a bit now and will go for a short walk and will venture out for more than my previous 1/2hr. It is so nice to walk around; to get fresh air and to move my aching hips. Elizabeth loves taking Mamma and 'little dude' for a walk and we make a great pair with me waddling and her odd gait but we take out time.

Another funny thing is I am now having braxton hicks contractions which are different from the ones that I normally have. I also have to check my blood sugars four times a day as I was dumping my sugars in the morning and failed that nasty glucose test. So far they are normal and the only I needed to change in my diet is to increase my protein consumption which will help stabilize my blood sugar. I am hoping that this will help my 3am snacking habit which really wreaks havoc with getting enough sleep.

I am packed and ready and most of the nursery is done. We just have to agree on a name which is not going too well; Elizabeth and I have our favourite name but Daddy is not on board.

Happy Halloween

2011-11-04T11:32:00.001-04:00

Of course another great Halloween. Elizabeth went out with a new friend who lives close by. She continues to have a fierce love for candy (just like her Father). She reminded me of myself when she got home as she sorted, bagged and hid her candy (from Daddy).

Getting to know Elizabeth

2011-10-28T10:52:00.005-04:00

Elizabeth really is enjoying being in grade 1 this year, I think last year she was a bit bored and now she is being challenged cognitively which she needed. This year there are no complaints about her not paying attention and urges for me to look into pharmaceutical help for her poor attention, instead she comes home telling me about science, religion and is reading chapter books. I cannot even begin to say how blessed we are to have the teachers and support staff she has this year, they have made this year so positive for her. She does have 1:1 assistance during the day to ensure her safety which is great as she has had some very off days and tons of falls lately.
Her teacher this year listened to my respetitive mantra 'if she is unhappy, naughty or edgy something is wrong' and will look into why she is not her normal happy self. Elizabeth has had some very off days and has done some very atypical things (spitting, being disrespectful and wanting to be on her own). Each time her teacher has problem solved why this is happening and calls me to discuss her concerns. She picked up on the edgy behavior and called me to bring pain medication as Elizabeth's legs were hurting, she has Elizabeth sitting on a chair instead of the floor at carpet time and the spitting stopped and Elizabeth announced 'I can now see Mrs. M.' and at recess she now has Elizabeth paired with classmates as when questioned Elizabeth stated 'that she cannot run with her friends so she plays alone'.
Instead of being told how miserable, distracted and defiant my child is her teacher is looking into why and we have a much more adjusted little girl which we are so pleased about.
We are having Elizabeth be accountable for her actions as well and with a written pact she knows that certain behaviors will cause her to lose her beloved Rexy for a couple of days and after his last vacation away she knows I do mean business.

Thankful

2011-10-12T06:17:00.000-04:00

We just finished our whirlwind Thanksgiving long weekend. The weather was amazing for Daddy to garden and for Elizabeth to spend lots of time outside. Myself I waddled around everyone reading and trying to not do too much. We had our dinner at my brother's house and actually got to eat outside in the sun which has never happened before. Elizabeth loved all the activities they planned for her and her cousin's; from bobbing for apples, pumpkin bowling, relay races and a prize booth. The kids and adults had a ball.
This year we have so many things to be thankful for;
- for our health (despite Elizabeth's early arrival she is a very healthy kid)
- for me now being in my third trimester
- for a Daddy who is tolerating my increasing need to nest
- for family and friends who are helping me to run errands
- for Uncle Philly who stops by to cut our lawn to free up some of Daddy's time
- for friends who will come out with Elizabeth and I knowing that they will be chasing after a kid who knows no limits while I sit on my butt
- for Elizabeth's school who are working hard to ensure her success and safety
- for Elizabeth inheriting her Daddy's ability to draw (the turkey above is a prime example)
We hope you all had a great Thanksgiving weekend.

She's Practicing / Third Trimester

2011-10-04T06:33:00.002-04:00

Elizabeth has been busy getting ready for her new role as a big sister. I think she would much rather have a baby dino for a brother (or even name him Dino) but I think she will be happy with who's hiding in my expanding tummy. Her dino Rexy has became her official baby; she changes his diaper, tucks him in his crib, feeds him, takes him for walks and now he is often given the privilege of wearing her baby brother's outfits (which are mostly dinosaur print). She is really trying to help out at home and states 'don't worry Momma I know you can't bend down I 'll get that for you' quite frequently.

As for how things are going for me I feel great usual, I am definitely bigger than I was with Elizabeth but so far if is mostly belly, I still have never ending contractions and am happy to report no cervical changes. I still am hanging out at home most of the time but am allowed to be on my feet for 1/2hr at a time so I do allow myself a quick errand or will take Elizabeth to a nearby appointment, that 1/2 hr really flies so I must plan my adventure perfectly. A major milestone is now I am in my third trimester which is super cool.

Progress

2011-09-23T17:08:00.003-04:00

This may look like a pretty average picture of a child jumping in a pool but for us this is a huge milestone that Elizabeth met this summer. We have been working on jumping for years; she can now get both feet off the ground about 2 inches and now can jump ahead. The pool this year was a great way for Elizabeth to work on jumping forward, usually we would either pull or push her so she did not leave her legs behind which has led to some very bruised and painful shins. Elizabeth even was able to do a couple of cannonballs too. Our 'tacky' pool was the best purchase we have made for her as she lived in the pool this summer and got a great workout for both her her arms and legs.

Hanging out on the couch

2011-09-13T09:59:00.004-04:00

Things have had to slow down here even more. I am now off work for at least this month and trying very hard to do as little as possible. My contractions were a getting a bit stronger and happening at rest as well so the High Risk OB thought it wise to stay at home during this precarious period. Last week we were quite concerned and I needed to go back to to see if Celstone was needed as there was some cervical change shortening but seeing how it is back to it's original length we are chalking it up to difference in technique. I do have say it is very unnerving to go each week and wonder if this will be the day they don't let me go home as I cannot even imagine what it would be like to be away from Elizabeth (and of course Daddy too) for so long.

Despite my husband and parents wish to have me on house arrest I do take Elizabeth to school and to nearby appointments and will go pick up a couple light groceries if needed which helps maintain my sanity. We have a housekeeper coming to do the heavy jobs for me and Daddy is now the chief grocery shopper which is a bit of a learning curve. I do have to keep reminding myself this is only temporary when I see that Elizabeth is not getting the exercise that she needs to maintain her strength and I do try to recruit as many people as I can to take her on a bike ride or out to the park.

The timing worked as well as it could as Elizabeth is now at school full days so I have the day to lie down and putter around in the house. I so far have not succumbed to daytime tv and am trying to limit my online shopping we are down to one income but an occasional package does arrive here which I sneak in.

On a great note I have now passed the date when I had Elizabeth as I am now 25.5 weeks where Elizabeth was born at 25.3 weeks which is an amazing milestone.

1st Grade

2011-09-08T15:05:00.002-04:00

Our baby is officially in Grade 1. It is so bittersweet I cannot believe she will be gone from me for an entire day everyday. She of course was so excited and did not look back when I dropped her off. The school has some pretty impressive plans set up for her and are really aware of her safety, she has an assistant full days now which I think is a bit much, I hope they give her space to be on her own and be the independent girl she is. They had her classroom chairs (First Class and Ray L), FM unit, versa frame in a private BR ready for her to use and her PT will be in next week to check on her. I met with her teacher and highligthed her movements and her inability to keep her body still so I hope this teacher will be a bit more understanding.

Elizabeth chose her outfit and was happily decked out with an abundance of sparkles and Hello Kitty (the Hello Kitty shoes actually fit over her AFO's, how I love Target). When she came home she was so happy and got right to playing teacher with her Dino's which was so sweet. She even ate her lunch that I sent every scrap of it, I am thinking she may need 2 lunch boxes for the day.

Our hopes this year will be where her teachers can see her potential and be patient with her as she perseveres.

Happy Birthday Auntie Katy

2011-08-28T17:01:00.003-04:00

My sister Katy recently had her 30th birthday and when asked what she wanted for her birthday her reply was GOMEZ. She loves Selena Gomez; she loves her music, the Wizards of Waverly Place and all the movies that she is in. Timing was great as I noticed Selena was coming to town so I was able to get some tickets to her show. Elizabeth lately has taken an interest in Selena as well so she was happy to come too. My friend and her daughter also happily came which gave me a bit of back up as I was not too sure how this big excursion would be for me and my limited activities. Of course my parents were outside the stadium waiting for us as they are a bit afraid I may go into labour at any time.

We secured a pretty good spot on the grass with our blanket so I was able to sit for most of the show and while my sister danced and sang her heart out. I don't think I have seen my sister this lively; the past couple of years she sadly for unknown reasons is declining in her speech and cognition. She is present with us but not the quick witted person she once was which is sad to see. Seeing how happy she was holding up her poster she had made and waving to Selena for the entire concert was so nice to see.

To pack or not to pack

2011-08-24T20:23:00.006-04:00

As I am getting close to when I went into labour (2 weeks until I am at 25 weeks) with Elizabeth for awhile I have been wondering what I should do to prepare. As with Elizabeth I had no warning that I was going to go into labour and Daddy was left to bring me supplies in the midst of our turmoil, I cringe at the outfits I was left to wear that he had thoughtfully brought.

I am a huge planner I like to have everything ready for whatever we do so it has been on my mind what I should get ready if something was to happen. So after a bit of a scare with me ending up in L&D as I was having frequent contractions I now have a bag prepared that I hope will not be needed.

I am now being followed by my OB weekly which is very comforting and have had no cervical changes. I am still contracting a fair bit so am trying to stay pretty low key. After my last scare I am drinking tons of water and have omitted Red Velvet cupcakes (this bulgarian boy like his father and sister really enjoys sugar).

I do not have the above bag but own a couple of the Lug bags and they are my favourite Mommy purses. I am hoping this will be the next bag in my possession as it would make a lovely diaper bag (hint hint Dear).

Fears

2011-08-15T21:54:00.003-04:00

Despite what I would call a very low key summer Elizabeth's anxiety has reached an all time high. I have started to see that what I thought was reflux and car sickness is Elizabeth getting anxious about certain (okay many) situations. The same theme continues as they relate around toys (Buzz Lightyear, Ken, Wall-E, Dora, Elmo and many baby musical toys) it seems as though we conquer one and a new toy jumps in the mix.

Going to any store that sells toys is petrifying for Elizabeth, she is sweating, crying and does what she can to avoid the situation all together. What made me really sees how bad things had gotten was when I told she was going to see one of her favourite friends at his house and instead of elation she sobbed because she was too afraid to go there.

She is really smart getting out of these situations and if you didn't know her fears you would not see how she will manipulate the situation to avoid facing her fears. She often wants to play outside at friends houses, say she is tired and needs to watch tv at daycare and even asked her auntie if Barbie has any boyfriends at her house to avoid catching a glimpse of Ken.

I have tried to step up her exposure to her fears and I am repeatedly seen pulling her through the toy section at stores talking her through her fears and we do bring some of these items home to work on but it is endless how her anxiety creeps up and I feel like I am torturing her.

I have called for help and hope to get her enrolled in some extra help before she starts school and it intensifies. Seeing her so anxious just kills me as she normally is the happiest kid. I can't help but blame this too on her prematurity and wonder when does it stop for her, when does she get a break from the insult of her early arrival?

Enjoying Summer

2011-08-04T21:52:00.001-04:00

Like everyone else our summer is flying by; with my work schedule and Elizabeth's PT, riding and swimming lessons we have been busy. We were able to get away for a week to my parents trailer and did some of her favourite activities. Elizabeth is so happy at the trailer and loves frog catching, fishing, swimming and going to the beach. Mommy especially loves the little country bakery which is close by. We know when Elizabeth is really happy as she hums when she is in her element which is exactly what she does when she is playing in the sand.

We did have a day trip to South Hampton and spent the afternoon at their museum which this year is hosting the Grossology exhibit. We have learned all we need to know about barf, farts, poop, boogers and germs. Ironically Elizabeth was able to answer all the barf related questions as it seems that she still for many reasons has a volcanic like barf every couple of months (we left our latest mark at Dairy Queen on route to the trailer).

The weather here has been stifling so we have had spent many days in the 'tacky' pool which has warmed up to a lovely 90 degrees.

Baby Bump Update

2011-07-19T21:16:00.004-04:00

I know I have been awhile in updating on how things are going with my pregnancy but I find by the time I get Elizabeth to bed and lunches made I am right to bed. Elizabeth is so excited about being a big sister and she tells her brother how cute he is and how much she loves him. She has even thought out how things will be when he is born and stated 'it will be a bit of a nightmare as she will have to stay with her Dad but not to worry as she will manage'.
As for how things are going just like my pregnancy with Elizabeth I feel great, no nausea, no food aversions, lots of energy during the day, I only can complain about not being able to sleep very well but that is it. The progesterone has definitely helped reduce the contractions and irritability of my uterus. I can now drive in the car without having to miss every little bump on the road as it would lead to contractions. I just have to make sure I lay down and rest, drink lots, no strenuous activity and wear very loose clothing (anything touching my belly leads to contractions). My last check-up showed no cervical changes so we will wait on the need for a cerclage. The only extra problem is I have placenta previa which may cause a whole bunch more problems that I really try not to think about. We are hopeful that it will move a bit and not cause too much trouble.
The baby is pretty active already for 17 weeks which I think sometimes causes contractions. I definitely have a pronounced baby bump now and am needing bigger clothes. I am still working and am on a very limited workload which my colleague and the Pediatrician's are very supportive. I hope to work as long as I can seeing that at work I can have the option of having slow days where I can get desk work done.
It absolutely frightens me at the thought of that in less than 8 weeks I will be as far as I got with Elizabeth. I find myself at work preparing to be off in an emergency by leaving notes for my replacement if I am off. I even in my head have made a list of what needs to be packed if I have to go to the hospital and I have to remind myself I do not need to pack yet. I cringe at the mess I was when I had Elizabeth, Daddy packed some items for me and I don't know where he found the clothing I had to wear the 10 days I was in the hospital. I do take comfort in knowing I am followed by a great High Risk MD who I see frequently so we take it one day at a time. I don't think I will ever feel the excitement or attachment to this little soul until he arrives safely and close to term.

The Graduate

2011-07-07T10:11:00.002-04:00

Elizabeth is officially done kindergarten and will be a big girl in grade 1 next year. Her class had a small celebration with some songs and treats which was cute. I have to say this year was not a memorable year for her at school and I hope that grade 1 will be better for her. I don't think her teacher understood (or wanted to understand Elizabeth's differences) Elizabeth's differences were almost an annoyance for her teacher and it did lead to some conversations and promises that things will be better next year. I hope the complaints of her 'selective hearing' and inability to keep still will be less and her new teacher will understand that her Auditory Dsysncrony and her CP are things she cannot control as hard as she tries. We are very blessed to have a great Special Education teacher who advocates for Elizabeth and works with her weekly.

Academically we are not worried for her, she does have some problems with numbers but we will work hard over the summer. Her report card of course showed her difficulty with paying attention (but that as explained is due to her ADD) and of course her printing is still behind and will have to be accommodated when she is required to do more written work.

Socially she has made huge gains and our previous concerns are less than before. She does at times want to be by herself to play and does voice that she cannot catch up to the kids when they play (I will address that with them next year when she is outside at recess). I can't say she has a close friend but there are a couple girls who she plays with and at least once a week she brings home a dinosaur picture/book from a friend at school.

I can't believe that in the fall she will be gone to school all day. It is a bit sappy but I still miss her when I don't see her all day when I am working. I am pretty worried how exhausted she will be as a full day will be very tiring for her but she will get used to it.

Now we have 2 months to enjoy the sun and have fun.

It's landed

2011-06-25T21:36:00.002-04:00

Our tacky mammoth pool has landed for the summer. I had sent Daddy to pick up a bigger pool this year as the 2 foot pool was a bit small for Elizabeth and her friends and seeing that we will be staying close to home this summer a pool seemed like the best way to have fun. Daddy had brought home a much larger pool this year which wasn't as apparent until he began to set it up. A pool 4 over feet high has been erected and took 3 days to fill with our garden hose but it is now here to stay. We did try to hide it's tackiness with tall grasses but it still stands out like a sore thumb in our backyard so I made Daddy apologize to our neighbours for the view.

Elizabeth is not being aware of the eyesore that it is loves it, the height is perfect for her to swim around and dive for her toys but she can still touch and keep her face above the water. After a bit of a heat wave it warmed up nicely and I even climb in to float around.

The only other downside with it's height is that I almost have to tip toe to see in the pool and there is no way I can see her unless I am leaning over the edge looking in. I have discovered her clubhouse gives me a birds eye view and I can zip down the slide if I need to rescue her (on modified bed rest of course).

I think we will get a lot of use of out the pool this summer. If you are ever by come join us for a swim, Elizabeth would love the company.

Soon to be 4

2011-06-17T21:22:00.005-04:00

Finally we can say our small family of 3 will become a family of 4. After a little help from some fertility experts we are now expecting a baby boy. I am already 13 weeks and feel great but already things are getting a bit scary and my last pregnancy with Elizabeth seems to be repeating itself. We are hoping the progesterone I have started will slow my contractions down and being followed by a high risk Obstetrician will ensure this little one will stay in for a very long time.

As for Elizabeth she is so happy; when we told her she cried because she was so happy. I have promised her she can help decorate the baby's room with a dinosaur theme. She has drawn pictures and collected all her dinosaurs for her new brother.

Please pray for us and wish us lots of luck.

Wednesday's

2011-06-08T21:04:00.003-04:00

Wednesday's are one of the days I have off work and they are our busiest days. We make our morning trek to physiotherapy which unfortunately is just under an hour each way if we are not stuck in traffic. I absolutely hate the drive and the time we waste in the car but the time with 2 different highly skilled PT's in the hour is very beneficial for Elizabeth. One of the PT's is a level 3 in CME Medek so she brings out the boxes and the balls using the exercises that Ramon has developed and her other PT works on lunges, squatting, her core and stairs. Elizabeth gets a really good workout there and the results definitely show as her walking continues to improve and she with reminders will alternate her feet on the stairs now.

After PT we make the mad dash home to get to school. I had found the 25 minutes we have left at home too stressful to get her fed and to school as she just wants down time to play with her toys (which I do not blame her at all) so now we stop at some unhealthy place to eat a quick lunch which has really helped with the stress level her teacher was reporting to me on Wednesdays.

While Elizabeth is at school for 2.5 hours I run around doing errands and try to clean part of the house. I do try to have 10 minutes to have a cup of tea and read.

After school we dash home for a snack and then to swimming lessons. The YMCA has a swimming program for children with special needs; for the monthly cost of enrollment ($30) Elizabeth receives weekly private swim lessons. The swimming lessons are working out great and I am no longer a basket case waiting for my fearless child to sink to the bottom of the pool. I am hoping by the end of this summer she will be able to swim on her own.

By the time Elizabeth and I get home to get dinner we both are miserably tired.

When I am exhausted I think how tiring this must be for Elizabeth as I am just the chauffeur, she is the one who is doing all the hard work with never a complaint.

Today was an even busier Wednesday as we both had dentist appointments (in different cities) and she had to see the orthotist to revise her AFO's at the crack of dawn. Days like these I am sad to report despite trying to pack healthy snacks we stopped at 2 different drive thru's for meals.

Time to tell

2011-05-26T20:45:00.004-04:00

Part of my job at work is working in our Neuromuscular clinic, there we see many young boys who have been diagnosed with Muscular Dystrophy. This dreadful disease causes a progressive deterioration of their muscles leading them to an early death. We often discuss with the families how and when to tell their child about their diagnosis; some parents handle this awful task bravely and some avoid it at all lengths leaving these smart boys to find out on their own. Sitting in on these discussions I thought about the talk I haven't had with Elizabeth.

It took a couple of weeks to initiate it and each time I thought about doing it I felt sick to my stomach and then I would remind myself that other families have to give such tragic news to their children.

One day while putting on her AFO's she asked why she and her fiance (yep still engaged to her little friend who also has CP) needed to wear them. So impromptly the discussion began; I explained how she was so tiny and fragile when she was born and how hard she fought to stay strong and come home. Then I explained just like the scars she has on her body she has one in her brain that we can't see but that scar causes her muscles to be weak and her balance to be off. I explained this is called brain damage, it won't get worse but will always cause her to have difficulties with her walking. This whole discussion I am trying not to let her see me cry as it kills me that we even have to talk about this.

Elizabeth is satisfied with what we talked about and even during breakfast blamed her brain damage for some spill she caused. She often now will ask about her other friends with CP and if they were baby birds too. For now I just reply that yes they have a scar in their brain too.

Adaptive Dance Class

2011-05-10T21:53:00.002-04:00

Quite awhile ago I had contacted the local news regarding the Adaptive Dance Class Elizabeth attends. I want other dance centers, sports groups and gym clubs can see what an amazing opportunity Ms. Melanie gives to Elizabeth and her classmates and to realize how needed these opportunities are for children with special needs.
Elizabeth did a great job in front of the camera. I love watching her skipping, I didn't know she was doing so well. The big end of year show is coming up soon, the girls have all been practicing so hard.

Dystonia

2011-05-04T21:10:00.005-04:00

Lately Elizabeth's dsytonic movements seem to be at a high. I really think she must be growing because she is a bit agitated, very restless, awkward and she often is mentioning pain in her legs. Lately I see more dystonia than ataxia; when she holds my hand when we walk there is a constant twitch/pull and her left arm is up when she walks. I see the pull it has on her body and I fear when she gets older what damage her spine will have due to her twisting when she moves.

Her movements are uncontrolled causing lots of spills, dropping her utensils and knocking things off the table. She very often unintentionally hits whoever is close to her with her flying arms. Most often we say oh well and keep going, we do try to get her to be aware of her space, remind her to pay attention to what she is doing and we are calm as it is not completely her fault that these things happen.

But on days where I am in a rush to get out for work or an appointment I am not as calm because I don't have time to deal with a big spill and a complete change in clothes. This week after drowning me in grape juice in my freshly ironed outfit for work she knocked another drink over and soiled her clothing. I cringe now for how I yelled at her and made her sit on the stairs while she sobbed and wretched up her breakfast. I hate that I was so angry at her because of something she cannot control. It also makes me wonder how others respond to these accidents as I have heard some comments from school about her movements. I can see how children can get frustrated with her as always knocks over the game we are playing with her flying arms and legs.

I just don't know how much ownership we need to give Elizabeth with her accidents. She does help to clean up her mess but a fair amount of these accidents would not occur if she were to pay attention. We have tried to minimize her accidents with appropriate seating and non-slip mats. I know I cannot scream at her like I did and I don't want to punish her but she is 6 now and I don't know if she does need some ownership for her accidents.

Our Disney Vacation

2011-04-24T21:08:00.006-04:00

We did it again; we took Elizabeth to Disney for her 3rd time. Once again we had a great time there, we walked our feet off through Magic Kingdom, Epcot, Animal Kingdom and Downtown Disney. As she is now 42 inches the choices of rides were more thrilling so Elizabeth tried out Thunder Mountain, Splash Mountain, Test Track, Dinosaur and my favourite Soarin. Her Daddy really enjoyed all the big people rides too. She continues to be fearless and the first ride she chose was the Haunted Mansion.

The parks were all very busy this time and we were thankful we had her wheelchair with us. Elizabeth has a very hard time walking in crowded areas, being bumped by people causes her to get into dystonic postures and fall and she is not quite able to change direction quickly if someone is in her way. Walking long distances is still not easy for her so using her chair in the big resort was very helpful. Elizabeth does not mind being in her chair at all, she often would pull the 'I'm tired card' so she didn't have to walk as we did encourage her to walk in less busy areas.

We used the 'special assistance pass' which allowed us to bypass many lines which was great as most line ups were 60-90 minutes wait. The staff made such a big deal of her greeting her and going out of their way to make her experience memorable.

Next time I do need to remember her FM unit as she has such a hard time hearing in noisy environments. I felt really bad as I knew she was missing quite a lot of the conversations and almost needs me as in interpreter in her ear if someone talked to her.

As we stayed outside of Disney we were able to enjoy time at the resort; we swam, went down water slides, played in the sand and at night watched movies and roasted marshmallows by the pool. Our villa had a kitchen so we made our meals and brought lunches which I prefer; one can only eat so much fast food, the line ups for food were also very long and it saved quite a bit of money.

Now we are back to a very cold climate and I don't think have been warm since leaving Orlando.

Dino Fest

2011-04-13T21:36:00.004-04:00

You may not be able to tell by these pictures but we just came back from Orlando and a couple of days at the Disney parks. One of the highlights of Elizabeth 's trip was the plethora of dinosaurs she was able to find. A day at Animal Kingdom sent us on a scary fast ride on Dinosaur, digging for dino bones, twirling on a triceratops and walking though a dino forest. To top off our dino experience we had dinner at Dino-Cafe (Rainforest Cafe but with dinos) which was an amazing experience complete with meteor showers. Elizabeth also went to Build-A-Dino and with glee stuffed a t-rex who she has named Rexy. Rexy was not complete without a blow dry and dino underpants. More of our vacation to come.

Spring is Here

2011-03-30T21:06:00.008-04:00

Spring is here and slowly beneath the melting snow we can see the tulips coming up. We engaged in one of our favourite spring activities, a trip to the maple syrup bush. As usual Elizabeth savoured and searched for every lick of the sweet syrup. The maple syrup of course was the best on the pancakes.

March break

2011-03-26T20:58:00.004-04:00

Elizabeth had a great March Break. Things were pretty low key which was nice as we still have a pretty busy schedule. The weather was nice and we even got to go for a bike ride with her Triton bike. One of her highlights was going to a reptile play center and holding a tarantula called Mrs. Fuzzybottom. It still amazes me how fearless she is and how much she loves animals. She does still scream for Daddy if she sees a spider in her room but once we catch it she keeps it confined as her pet. She also enjoyed going accessory shopping which is her new trend, she chose lip gloss, a headband and sunglasses which she keeps in her pink purse (along with her Dinosaur).
We also celebrated her homecoming this week. It has been 6 years now since she has been home with us and we can't be any happier to have such a great kid. It is amazing that 6 years ago she came home like this.

Firsts

2011-03-15T20:59:00.002-04:00

Elizabeth has had some pretty exciting first experiences which we are so happy about. She has had her first play date where a classmate invited her over to play. Elizabeth went to her friends house without me to play and had a pretty good time. I could tell she was pretty anxious as she almost chewed through her shirt she was scared by some of her friends toys (Buzz Light Year and Ken). This friend is a really sweet girl who always goes out of her way to help Elizabeth, she is the first in line to carry her backpack to me when I pick her up at school. Elizabeth also went to a classmates party on her own. Elizabeth has an epi-pen due to her nut allergy so it makes another reason to stay with her at parties but the parents who were both teachers had no concern with her nut allergy and were comfortable in using it if they had to. The mother running the party remarked how amazing all the girls were at helping Elizabeth on the stairs and watching out for her.
We are very lucky to have her in the school she is in the class is quite small and the families have all been so accepting. Over the past few months I am really noticing the social gap between her and her peers getting smaller and her interactions are much more appropriate and unprompted.
Another first here was Elizabeth's first bad word. It occurred while we were playing Doctor. Elizabeth was the Doctor, I was the Nurse and Daddy the patient Elizabeth while checking her patient directed the 'stupid nurse' to complete a task. The irony is I am a Nurse and so I took a bit of offense and sent her to her room. The patient had to leave the room for a chuckle.

The Dragon

2011-03-08T20:48:00.006-05:00

Elizabeth is finishing up her yoga class at the children's treatment center where she receives her PT/OT/SLP services. This yoga class is a bit amusing as most of the children there are not zen like (Elizabeth may be the least zen like). It can get pretty wild and giggly but the instructor is calm and patient.

Elizabeth has really improved over the course of the group she can hold poses for longer and can get into her most favourite pose the dragon. The dragon is a great pose which she is really motivated to learn. To complete the dragon she must get into a high kneel and then go up on leg and maintain her balance. These steps are what we have been working in PT so she begin to get up to standing in a more mature pattern.

To practice her yoga at home we ordered these Yoga Pretzel cards they are a fun way work on strength and balance.

IEP's please don't hate me I am just a Mom

2011-02-27T20:11:00.006-05:00

Hopefully we are now in the final draft of Elizabeth's IEP. In December we had Elizabeth's IPRC (Identification Placement and Review Committee) meeting and she was identified due to her physical disability and her hearing loss. An initial IEP was created by her SERT (Special Education Resource Teacher) and with Elizabeth's Hard of Hearing Itinerant Teacher. After consultation with some of my work colleagues it was felt to be a little 'slim'. Slim being only 2 goals; to interact with her peers appropriately (being aware of eye contact, cues etc) and saying 'please, thank you, would you' during social interactions.
Trying not to to react with my heart wanting to yell and scream 'after 6 years of intensive work learning to talk, walk, play, hear and learn and after sacrificing ourselves financially and emotionally you want her to say PLEASE and THANK YOU'? But I tactfully and with much research and returned the revised document which addressed areas that we work on at home and in her PT/OT therapy. As this is her SERT's first IEP regarding physical impairments she also sought expertise from the Principle and the Spec. Ed. Itinerant and we sat down to review the revised edition. I commend her SERT for being honest in stating that this was an area she was not used to and for seeking guidance but after frequent comments I still don't think she understands why we push Elizabeth so hard and we try to stay on top of things. Comments like 'having her under a microscope' and that she is following the SK gym curriculum without assistance drive me crazy. Is Elizabeth doing well at school 'yes' she is doing amazing and she is always improving but will she ever catch up physically 'no' and that's okay. We stopped a long time waiting for her to catch up but others still want us to go back to that painful time of trying to 'catch up'. With appropriate modifications to her environment she can try to keep up where her peers are but there also needs to be physical assistance and close supervision and that needs to be on her IEP (or in writing as her SERT says I like to have).
I left her school defeated I hate being talked to as 'the parent' when I am professionally one of them on my working days. I hate that the school staff think I am such a mean pushy mom who places her child under a microscope and makes them write everything down.
What I am thankful is for support in creating her new IEP and a much needed Safety Plan (thanks Krys) that the school now has in place. What I hope over time is the school understands why we work Elizabeth so hard and why we want the school to do the same and that I am an okay mom.

Our new friend the Orthodontist

2011-02-16T21:15:00.002-05:00

We had our first trip to the Orthodontist to discuss Elizabeth's jaw. Since she was a baby people would often comment on her uncanny mouth and how she resembled Winston Churchill. Her under bite is so severe that when she bites down her bottom teeth completely cover her top teeth. Her Speech Pathologist wonders if some of her articulation difficulties are due to her under bite and Elizabeth's watchful dentist thought it was time we should meet Dr. F.
Of course Elizabeth was the youngest client in the office and was her usual chatty self asking the Dr. what his intentions were with her. He took one look in her mouth and pronounced her as his new friend. This new friendship (very expensive friendship) won't start until she is older and will include braces and surgery to align her jaw.
Dr. F mentioned to look out for her 6 year molars as they should come in soon which I think might be awhile as all her teeth come in very late. On the way home Elizabeth declared she had mouth pain and should stay home from school as her 6 year molars were coming in.
Once again the effects of her prematurity continue to pop up and reminds us this will be lifelong.

Birthday's

2011-02-02T21:12:00.002-05:00

Since Elizabeth started school she has been the party girl. She has been invited to an endless string of parties which we are so happy about. She has been bowling, to a makeover party, to indoor playgrounds, a gymnastics party, Princess party and a jungle party. I have been with her for each party and it has been nice to see how she is interacting with other children and how they are interacting with her. Of course I still see a difference between her and her peers socially and she has yet to have a true friend at school but the children and their families are including her. At one party there was music playing Elizabeth and a little boy danced and he dipped her as they twirled around which was the sweetest thing to see.
We are looking forward to more parties, I just have to start saying no to the cake as I am not burning it off like the party girl.

Adaptive Dance

2011-01-21T21:19:00.002-05:00

Hope you enjoy Elizabeth's dance recital she had this summer (she is the smallest one in the class). Her adapted dance class has been one of her favourite activities where she can be herself and have fun. With assistance from her helpers she is working on new skills and building her strength. Her helpers are the most amazing young girls who are so talented and who give time from their busy schedules to help Elizabeth. We are so thankful to her teacher for giving children with disabilities and opportunity to dance and to shine.

Hooray for Snow

2011-01-16T20:22:00.005-05:00

Finally we have snow, it has been miserably muddy until now. Elizabeth continues to LOVE the snow; she loves to eat it, roll in it, to eat it, climb in it, to eat it, build with it and eat some more. Have established how much she loves to eat it? She grazes so much that her face is a chapped mess and we have had to develop guidelines with snow eating.
I too love the snow, there is so much to do and I enjoy shovelling the driveway (no I am not nuts)I just love being outside getting exercise. We have been out as often as we can to go tobogganing at a local hill and Elizabeth has a ball. I love that she is getting an amazing workout by walking up hills. It is nice to see each year how she is improving as last year she needed lots of help to climb up the hill and this year we just need to hold her arm.
Elizabeth continues to be a daredevil and loves the 'jumps' and now can hold herself upright on the toboggan during bumps. She even held on tight enough to knock a man out of the way as he was in her path. She also learned from her Uncle that donuts are not only the ones you eat and they are now added to her daredevil list. Hopefully we can keep this white stuff so we can get out more and enjoy winter.

Anxiety

2011-01-10T21:35:00.004-05:00

This cute little fella in the picture is capable of causing emotional breakdowns filled with crying to the point of vomiting for Elizabeth. A visit to a department store 3 years ago and me pressing his tummy has permanmently etched a traumatic memory in Elizabeth's little head. This is not the only creature that upsets Elizabeth you can add Wall-E, baby alive and baby toys that play music.
At her last appointment with her Developmental Pediatrician a toy went off in the hall and sent Elizabeth into an emotional meltdown and the rest of the appointment Elizabeth would not look at the Dr. and was very anxious. After a long conversation with her and talking about some other concerning behaviours (chewing on fingers and clothing, highly excitable) she feels that she has anxiety and all the new changes this year have caused her anxiety to increase. I had been blaming her new behaviours on sensory needs but after seeing how these behaviors stopped over the Christmas holiday I am in agreement.
Our new plan is to work on desensitization with the objects that cause her so much fear and to teach her coping skills to use when faced with an anxiety provoking situation. This week she has conquered Baby Alive and has declared that Iggle Piggle can wait until she is 7. I think Iggle Piggle is coming sooner than next year but we will do it together (and on an empty stomach).

Merry Christmas

2011-01-01T22:44:00.003-05:00

We hope everyone had a good Christmas holiday. Of course our time off has flown by and one more day until we are back to work. Despite some sort of influenza virus that ravaged both Elizabeth and Daddy for a good week each we still had a good time. We kept to our tradition and went to Christmas Eve mass with the girls and they enjoyed the children's service and learned about why we celebrate Christmas. Elizabeth had a great time Christmas morning she woke up at 2:00 am and proceeded to open her stocking therefore was pinned down by me and we all slept in until 8:00 which was a real treat. She received the Tangled hair braider princess that was top on her list and as soon as she came in the living room despite being wrapped in heavy paper was greeted by a yelping puppy in a box (one that requires batteries we are not going there with a live one) once unwrapped she discovered GoGo the walking puppy which she loves.
We had a great Christmas breakfast with Grandma Ellie and Grandpa Boris and was spoiled by them. We ended our day at Grams and Gramps house with her cousins Madison and Danica and once again was spoiled again with her Video Girl Barbie (a total change from Rocky the talking dump truck last year). Of course there were some dragons, hot wheels cars and dinos as gifts but I am loving the fact that Barbies were top of her list for Christmas. As usual we have spent a large portion of our holiday trying to find room for all her new goods and I think a trip to IKEA may be in the future. Mommy and Daddy shared a gift and we now have a better camera so improved pictures will be in the future.

Thank You to All

2010-12-26T19:19:00.007-05:00

Elizabeth's Christmas project for the babies in the NICU went perfectly. The donations we received from family and friends were amazing, we even received gifts from New York and Pennsylvania (thank you Anne and Abby). As you can see in the pictures the gifts were endless we received blankets, toys, hand knit hats & blankets, clothing, books and Christmas keepsakes.
With the help of Angela who has beautiful twin girls who were also born premature we stayed up late wrapped each gift and attached a card which had the girls pictures and how small they were when they entered the world.
On Christmas Eve Elizabeth, Meredith, Courtney and their big sister Kaitlyn delivered the gifts to the NICU. We had planned a drop off at the door but the Charge Nurse had us bring them down the hall in the NICU. We were not prepared to enter the doors to where everything began as even now it still brings back some scary memories that we try not to relive.
Elizabeth was so excited to bring the gifts for the babies and was so concerned about the 'tiny baby birds' as she calls herself when she looks at her NICU pictures.
I am sure the gifts from everyone will be cherished by the new parents who are with their babies in the NICU this Christmas.
Thank you to all who helped out with our new Christmas tradition.

Officially 6

2010-12-19T21:00:00.000-05:00

Elizabeth is now officially 6 years old. Over the past week she has had endless cakes and get-togethers for her birthday. The first party was with her friends at a local indoor playground where she celebrated her birthday with close to 20 friends. I am so happy see the relationships she is developing with other children some who are family friends but others who she has met at school. On the day of her birthday Elizabeth was invited to a Christmas party for a girl in her class and it warmed my heart to see this little girl tell the other kids that Elizabeth was to go first because it was her birthday and her mom had added candles to the cupcakes and all the kids sang Happy Birthday, this was another affirmation of the choice we had made for her school as there are some great children and families who we are getting to know. Mommy and Daddy bought Elizabeth Barbie and her horse Tawny which she loves and a Nintendo DS which she has figured out all ready and loves playing.
It hard to believe that only 6 years ago we were had just begun a hellish nightmare and now we have a witty sweet little girl who we are so proud of.

A letter to Santa

2010-12-16T23:04:00.000-05:00

Elizabeth has finalized her requests to Santa and worked hard on her letter. She has surprised us completely and has asked for Barbies this year. She has 2 Barbies already and lately she has been playing with them which I love to watch. Her new daycare has 2 little girls and I think their interests are rubbing off on her. I am fairly sure Santa will happily oblige and ensure the Barbies she has asked for will be under the tree.
As you can see in the letter her printing is getting much better with a weighted mitten she has more control and her letters are getting smaller. She is on a waitlist to be assessed for a computer as writing is difficult, slow and is beginning to frustrate her. We are confident that her printing will continue to improve so she can complete short written works at school.

I let my guard down

2010-12-07T21:30:00.004-05:00

Things have been very good in the barf department for Elizabeth. She had gone 4-5 months without vomiting and is eating quite well (I won't count getting car sick on her Halloween costume because Daddy let her read her book in the car). Because of her long vomit free spell at some point I stopped doing a cursory check for garbage cans and quick escape routes. This left me ill prepared at her last Dentist appointment.
I think a series of events led to her mass explosion across the room and at the poor Dental Hygienist but she did give us a warning (I'm gonna barf)but my previous quick reflexes (I have been able to slide a bowl across a table and catch her dinner) and not knowing where the garbage can was left her and the office in a mess. Poor kid had to go home in the cold in her winter coat and underwear.
The plan for next time; no cookie dough tooth polish, she is not to lie flat and only afternoon appointments (she is pretty gaggy in the mornings). This little episode, a frequent cough and her gagging through breakfast is leading me to think that reflux is still not a thing in the past. Maybe we should invest in one of these, I do find Ziploc bags are great but it would be nice if they were not clear.

Help us Help Babies this Christmas

2010-11-24T14:46:00.005-05:00

After reading Anne's post (see link on last post) I have been thinking what we can do for the NICU that cared for Elizabeth. Every year as Elizabeth''s birthday approaches I want to do something for the NICU but life never seems to slow down for us. Elizabeth still averages 2-3 appointments weekly for therapy (speech, PT, OT), her medical appointments and with her gymanastics, hippotherapy and dance we are always on the go. So 6 years later I am now determined that we will finally help the babies and their families who will spend their first Christmas in NICU.
Elizabeth was born December 17 and as you know it was 3 1/2 months too soon as she was due March 29. Elizabeth's first Christmas was not one I want to relive, Christmas Eve she became very unstable and the Doctors and Nurses were quite concerned about her. I sobbed to her Dad that I hated Christmas and I never wanted to see another Christmas. As we did not anticipate a Christmas baby we also had not bought one present for her 1st Christmas and I was upset that she would not have anything on such an important day.
On Christmas day 2 cherished moments happened; when we arrived at her bedside she had gifts to open and I held her for the first time. I was so touched that complete strangers had bought her gifts and we continue to cherish these gifts each Christmas.
This year we would like to make Christmas day a little better for babies who are spending their 1st or even their 2nd Christmas in the hospital and for their parents who are spending Christmas day not with their families having turkey dinner but with their sick infant in the hospital.
The NICU that Elizabeth was at is a large facility with almost 50 beds so this is a huge undertaking that is why we are asking for your help. We would love to have donations of babies first Christmas ornaments, blankets, a cherished book, Christmas stockings or small bright baby toys (please no stuffed animals as they can carry germs). We will deliver these gifts Christmas Eve and Santa's Elves (the NICU Nurses)will deliver them Christmas morning.
We hope to put a smile on a parents face and let have a little bit of normalcy on their baby's first Christmas. If you would like to contribute please e-mail me or leave a comment here.

I couldn't have said it any better

2010-11-20T20:56:00.003-05:00

November is Prematurity Awareness month and Anne a very dedicated Mom to Eliza who was also born too early sums it up click here to read her post.
Elizabeth will be 6 years old next month and still her prematurity continues to affect her and will unfortunately affect her throughout her life, it has also affected our family in so many ways. The mantra 'they will catch up by 2' will never be her case and not for many other babies born early and the Health Professionals giving this message give false hopes and do not prepare parents for the difficulties they will face.
Living in Canada has allowed us to access top notch medical care and not to have to worry about mounting medical bills. We are so thankful for the amazing care she received in the NICU and we attribute her daily successes to the care she received.
I would love to be able to do something for the NICU that Elizabeth spent her first months in but each year I find the running to and from appointments has not slowed for us and free time continues to be at a minimum. I have an idea and I hope it will work out so stay tuned.
Thank you to Anne for your honesty, it reminds us that we are not alone.

On the Bench

2010-11-14T20:58:00.003-05:00

As Elizabeth is doing better at gymnastics and has a young fearless coach I now get to sit on the bench with the other parents and watch (at the edge of my seat). Usually I had joined her and helped her as needed. As I sit on the bench I get to watch other kids and listen to their parents.
I am sure other parents of children with disabilities agree that they often feel very conscious of what others think about their children. I am very aware of when others stare at her or make comments about her. I see how some parents roll their eyes when she takes longer and causes the other kids to wait their turn. I am aware of the complaints to the staff regarding Elizabeth being in their child's class but fortunately for us their 'fair play' rules allow Elizabeth to participate with her peers. I see the kids rush to get in front of her so they don't have to wait and I have even seen a child step over her when she has fallen down just so she could ahead of her.
What I was not prepared for at her last class was to sit by a Grandfather who did not know Elizabeth was my daughter and listen how he was describing to his son a little girl with 'determination, spunk and perseverance' he remarked over and over again how much she improved over the past couple of weeks. He noticed me giving her a thumbs up and asked if I was her mother. Trying to fight tears I told him she was my daughter and thank you for seeing her how we do; determined, spunky and a girl who tries hard in everything she does.
Check out the clip below, she wowed us with walking along the wide balance beam and stepping over obstacles while in her Superwoman suit.

Gymnastics

2010-11-14T20:55:00.000-05:00

Happy Halloween

2010-11-01T06:30:00.004-04:00

Elizabeth had another great Halloween, I think she has more fun at Halloween than Christmas. Trick or treating should happen weekly as it is a great way for her to get exercise, all the uneven surfaces and the walking is great for her. Despite Elizabeth being a child who loves to get dirty there is still no way she will touch to the insides of the pumpkin but she happily drew a T-Rex on her pumpkin. She went trick or treating this year with her cousins who now live pretty close to us which is great. We made our ritual witch finger cookies which turned our pretty gory. I got to go to her school and see her Halloween dance, it was great to see all the new friends she has. I had to laugh as she was chasing all the boy superheros around pretending to beat them up as she was Superwomen. Daddy even got dressed up and looked quite handsome in his bikini and hula skirt. After sorting her loot Superwoman passed out and I am sure she had many dreams of all the delectable treats she picked up.
Hope everyone had a good Halloween.

Preemie Brain

2010-10-25T06:02:00.004-04:00

After many sleepless nights worrying about the results of Elizabeth's psychological/educational assessment the results are back. I think we have both spent this past month bracing ourselves for the worst as we have been really worried that Elizabeth will be diagnosed with Asperger's Syndrome. Since she has started school she has been doing some pretty odd things (spinning things, constantly moving and I am finding her on her own most often when I pick her up from school). We of course have been very observant of 'symptoms' lately and I am sure we have been on Elizabeth when she does something a bit odd (sorry Elizabeth).
The results did not show Elizabeth is on the Autism spectrum at all (YIPEE). So now we can breathe a huge sigh of relief and know that we have a really quirky kid who now will be allowed to play with her dinosaurs again (I had them banned as she REALLY likes to play with them). She did show pretty typical features associated with ADHD which is not much of a shocker for us she is pretty distractable and still quite impulsive. Similar to previous testing she continues to have problems with visual spatial skills and ranged from the 9-28 %. Her fine motor skills were below the 9 % which we know; despite her best efforts printing is still difficult for her to do because of her shaky uncoordinated movements. Her language skills made us proud as they were ranked at 7 years 10 months for both receptive and expressive but her poor articulation of words still makes things difficult for her as not everyone understands her.
The recommendations for her include; an FM unit which we luckily have, a computer/assistive device for typing as printing is far too difficult and time consuming and close supervision to ensure her safety. The Psychologist said because of her advanced language skills Elizabeth hopefully can compensate for her visual spatial skills as she can understand through description of problems as opposed to looking at them. Her thoughts were Elizabeth should do fine with an academic program with the appropriate support.
We are pretty happy with the results of her testing, the things we had been warned about when she was born regarding ADD, visual processing were present so all in all she has a pretty 'typical' preemie brain.

Baby Chair

2010-10-17T08:09:00.002-04:00

We have been working with Elizabeth's school and her OT to find seating at school for both the floor and at her desk. Her teacher is really noticing Elizabeth's movements especially on the floor at circle time and feels she is not paying attention. Elizabeth is having a hard time sitting on the floor and has been lying down or sitting 'w' style which are both things that she does not do at home. Her OT feels that she is paying attention but she just cannot stay balanced and the slightest movement has her falling over. We have noticed her movements have increased and she is pretty busy at home too, when we catch her she tries to justify her increased activity, she told us the other day she was just 'making obstacle courses' and when she was spinning something it was 'a tornado for her ponies'. I have been thinking about trying brushing again to see if it will calm her as she is pretty excitable lately and I seem to remember she did this last year at the beginning of school.
To keep Elizabeth still on the floor her OT had suggested to try to the childrite seat which really is the bigger version of the Bumbo. I had my reservations about this chair but I thought I would let Elizabeth see what she thinks. I asked Elizabeth how she likes her new chair and her response was 'it is a nice fall color, it is comfy and it is a baby chair'. Her teacher says it does keep her still which is great but I don't think that alone is worth her feeling like a baby or the potential of having her friends make fun of her.
We are really grateful to have a great OT who is already noticing Elizabeth's needs and who is flexible and listens to our concerns and Elizabeth's wants. This week we will try some more options and hopefully we will find something appropriate to keep her supported and maybe a bit more still.

Happy Thanksgiving

2010-10-11T20:44:00.003-04:00

We had a beautiful Thanksgiving weekend, the sun was shining and the rain stayed away. We spent lots of time outside picking pumpkins, pumpkin bowling, visiting a conservation park and having turkey dinner with our family. What I really noticed this weekend was how much more endurance Elizabeth has, she walked for a good part of the day and did not even complain about her knee pain at night. We have also noticed Elizabeth is able to step up and down curbs on her own and her falling is less frequent.
We definitely this year are thankful for all the progress Elizabeth has made and how hard she perseveres. We are also very thankful for our family and friends, they are there when we need a hand.

Fall is here

2010-10-03T21:49:00.006-04:00

I guess we can officially say good-bye to summer, the cool weather is a reminder that fall is here. One thing we really look forward to in the summer is going to the local farms for apple and pumpkin picking. The warm baked treats they sell are pretty good too. It is a good way to get fresh air and any way to get Elizabeth active without her realizing I am working her is the best. I love seeing how each year her endurance has improved as this year she was able to walk through the orchard and only needed a wagon ride back to the car, last year she spent a fair bit of time in the wagon.
Elizabeth is of course already talking about Halloween and told her teacher her favorite thing about Halloween is 'treats, treats, treats'. Elizabeth has already convinced me to decorate the house for Halloween and on Saturday morning we woke up to a child yelling 'boo' with cat ears and a tail.

2010-09-19T21:01:00.003-04:00

I was approached by a colleague at work who had just finished a course from Cascades. As part of the course my colleague would receive a free pair of AFO's and she thought Elizabeth would be great to try them. I have been looking at these AFO's for awhile but did not want to invest money buying something that we have not tried.
Elizabeth was fitted for the Cascade Jump Start Bunny orthotics, these ones help to minimize knee hyperextension and keep her foot in proper alignment. We really want to work on Elizabeth's strength and increase her muscle mass to her lower legs and her old AFO's do not allow her to do this.
The bunny's have been great and she really likes them. They do limit her knee extension when she stands and they allow her to sit more comfortable on the floor which is great for school. The bunny's also help keep her feet from dropping when she rides her bike. She still needs the support of her regular AFO's for playing outside and walking distances as she will complain of knee pain at night if she wears them when she is active. We are hoping with her new phsyiotherapy block she will get some increased strength and be able to wear her bunny's when she is active too.

Big Girl School

2010-09-12T21:32:00.007-04:00

Elizabeth started Senior Kindergarten last week and is loving big girl school. I have not been worried about how she would feel about Kindergarten because she is so easy going. Her first day of school she went off with the other kids and didn't even say good-bye. The little girls flocked to her as her outfit was pretty 'blingy' with her new sparkling lite-up sketchers and her bejeweled shirt all which she chose herself. We arrived at school with all the 'non-normal' first day items that I thought would help with her transition (maybe more the teachers transition), AFO's, handouts regarding dystonia, ataxia and Auditory Neuropathy, 2 Epi-Pens, weighted pencil and FM unit.
I was a bit worried about her going as when she met her teacher last week they gave the impression there would not be an Assistant for her, of course I was not happy. Luckily on her first day I met with the Assistant who would be available to help her get dressed and assist her with gym and recess. We also on the first day met the Itinerant for the Deaf who was there to set-up Elizabeth's FM unit which I was really impressed with.
All in all it was a good first week. There are things that we need to iron out but for now I am biting my tongue and trying to avoid being 'that' Mom. Hopefully as they get to know Elizabeth they will understand how much she just wants to be like her peers and will allow her the same opportunities, for now I will just hang on and wait.
You may have noticed in Elizabeth's pictures no AFO's, we are trying out some new ones and will post her progress soon.

2010-09-06T20:47:00.004-04:00

Elizabeth had her routine hearing check at Sick Kids last week and as it is becoming quite monotonous. Elizabeth has to listen for the sounds and place pegs when she hears the sound, this is the same activity she has been doing for the past 3 years (see above old picture). I despise this activity for many reasons; the pegs I am sure have never been cleaned, she of course will still put them in her mouth, the abundance of pegs are tempting for Elizabeth and her sensory needs (she loves run her hands through the bucket), I have to attempt to distract her from running her hands through them and keeping Elizabeth still for any length of time is a challenge. Elizabeth does pretty good despite how boring it really is but after 10-15 minutes we have both run out of patience. We have had the same Audiologist since Elizabeth's Auditory Neuropathy diagnosis and she doesn't mind all Elizabeth demands for stickers and for her to play the animal that make sounds. We also saw her ENT and he is still amazed by her progress as she is one of the few children to not need a cochlear implant. Only 15% of babies with AN regain their hearing and she is one of them which is such a blessing.
Normally her test results show a mild hearing loss in her left ear and her right ear tests fine. Last weeks results showed her left ear with a mild hearing loss and now a loss to her right ear as well which is not typical and is not related to congestion. AN can be such a frustrating diagnosis as it is does fluctuate day to day and we do not know how much distortion Elizabeth deals with. A great example of how AN distorts speech is here.
We will go again in 4 months to be retested and hopefully her right ear will be better. It is a good reminder for me to increase how much we use her FM unit at home and when we are out but the times when she really needs she cannot wear it (the pool and gymnastics). I must remind myself to bring a different activity for Elizabeth, any ideas would be much appreciated.

Swimming

2010-09-01T21:09:00.005-04:00

Elizabeth just finished another session of swimming lessons. I know I have said this before but she loves water, I think this a time she feels free. Sometimes this freedom she feels is a bit too much for her and she thinks she can just float away but at least this time they did not have pull her out from the bottom of the pool. She was able to hold still long enough for a back float and is beginning to swim a bit on her own (under the water). As usual we sit on the edge of our seats waiting for her to go under and this time was even worse because they were learning to dive in the deep end. I myself think learning to swim should come before diving in the deep end (with no floaties). Her instructor was great as well and she really worked hard teaching Elizabeth to pull herself out of the pool which too she is getting better at. We will sign her up again in the spring as I think I have enough white hairs for now.

We will take option 'No'

2010-08-22T21:37:00.006-04:00

What I despise the most in the summer is going for all Elizabeth's medical appointments. I absolutely hate spending a summer day sitting in dirty hospital waiting rooms trying to keep her occupied (as above we were playing playdough that I had stashed in my purse) and fighting hours of traffic to get in and out of Toronto. Elizabeth continues to puzzle and baffle every Doctor we meet with her varying symptoms. This summer we have seen some of her regular Doctors and also some new ones each one mystified by this 'very interesting and bright child'. As her Movement Disorder Specialist is away we met with the Doctor who trained her. I thought Dr. L in in his endless years of working may give us a glimpse as to what her diagnosis is. Dr. L. was interested in how she moves and specifically how she gets up to standing (think beginning walker on both feet and then pushing up with her hands). He feels she has both Dystonia and Ataxia but is not sure why, he does not feel this is related to prematurity. He was honest in stating that there was nothing than can be done for Ataxia presently and at least he was not too favorable of deep brain stimulation. The only options left for diagnosing were muscle biopsy and cerebral spinal fluid testing, we opted 'no thanks'. We also have seen the Geneticist who once again found Elizabeth's symptoms puzzling and does not feel her balance issues relate to prematurity. Her options; more blood for DNA testing and repeat Friedrich's Ataxia testing (this will be her 3rd time being tested) to rule out a rarer form. She also questioned whether Elizabeth has Perrault syndrome but this cannot be tested presently so we would need to wait until she hits (or doesn't due to the syndrome) puberty. We once again opted for 'no thanks'. Both Dr's think that her hearing impairment (Auditory Neuropathy) may be a key to her diagnosis as it is recently being linked with many disorders.
We feel all this invasive testing at the present is not fair to Elizabeth. A diagnosis of a rare syndrome will not change who she is or what we are doing for her and the search to find out why she is the way she is would just add extra stress on her and us. Her Neurologist was not too happy with our decision and said it could impact her children but Elizabeth has lots of time to decide what she wants done with her body until then we will stick up for her.
We of course tomorrow need to get up at the crack of dawn to see her Audiologist and the ENT, I hope it is rainy so we won't be cooped up on one our few summer days we have left.

Puddle Jumping

2010-08-11T21:22:00.003-04:00

Splashing in puddles is one of Elizabeth's favorite things to do and it is also a great way to work on her jumping. She is now getting both her feet off the ground at once when she stops and concentrates. Elizabeth is sporting a very trendy look of plastic bags over her AFO's as we cannot find a pair of rubber boots to go over her AFO's. Word of advice plastic bags over AFO's do not work they just hold even more water.

Seussical the Musical

2010-08-03T23:09:00.000-04:00

Elizabeth finished 2 weeks of performing arts camp at her old pre-school. On the last day the students put on a performance with the senior campers. I was so proud of Elizabeth; she followed the routine perfectly and really did well keeping up with her group.
The performance this year was based on the Dr. Seuss book 'Horton Hears a Who'. This story means a lot to us as we would often read book this to Elizabeth when she was NICU. In an effort to save the 'Who's' living on a small speck Horton teaches his friends 'a person's a person no matter how small'. It is a great story that teaches acceptance and how to stand up for what you believe.
The video is bit shaky as I was giggling at how cute they were.

I am also pretty happy with myself, I uploaded this video to you-tube on my own for me this is huge.

Conversations with Elizabeth

2010-07-29T20:53:00.002-04:00

Elizabeth has been asking lots of funny questions lately about babies and about what she was like when she was born. After reading a book she has on the human body and pulling the flap to see how the baby born she expressed her disgust that the baby comes from her mothers 'bum'. I explained where the baby actually comes from and she once again expressed her disgust. She then asked if she was born that way too, I explained that because she was so tiny and needing help the Doctor's helped her come out faster from a incision in my tummy. Elizabeth ended the discussion stating 'I hope the next baby is born out your vagina'.
At least this discussion was at home, many of our impromptu talks happen when out in public and she really catches me off guard.

Next Time Decaf

2010-07-23T18:37:00.010-04:00

After a year and half wait list Elizabeth is now having her psych-educational assessment. Depending on my mood I am okay or anxious about this testing, some days I think she will fly through this testing and they will tell me that she is a very smart girl who will do great and other days my fears are they will come back and tell us she has ADD and/or Asperger's. We feel that this testing is important so her teachers can adapt to her learning needs early on. We have no doubts about her ability to learn as she truly is a walking encyclopedia but her intense knowledge also makes us nervous because she really knows too much for a 5 year old. She continues to be impulsive and distracted at times but it is improving.
Elizabeth did quite well from what I could hear (Mommy's are not allowed to be present) I could hear her singing and giggling during the testing. Me on the other hand not too good the stress of the impending results had me edgy but the biggest problem is I drank a large Starbuck's Iced Coffee just prior to her testing. I don't drink coffee (hot or cold) and I should have thought that Iced Coffee contains caffeine (duh) but I drank a large from a freebie Daddy had got. Those were the longest 3 hours I have spent in a very small waiting room with nothing to do and on an extreme caffeine high. Of course the secretary was sitting near me and I was trying to be still so she would not report me to the Psychologist. To top off our day I had promised to take Elizabeth to a nearby splash pad for a treat for her hard work and of course when we got there it was closed so she at the end of her rope had a meltdown with crying and retching but we got sorted out when I found a nearby outdoor pool for her to paddle in. It took about 7 hours for the caffeine to clear my system even after lots of water and a run.
Elizabeth begins part 2 in a couple of weeks and next time I will be prepared with a decaf tea and a juicy book to pass a couple of hours and I will ensure that her reward won't be a let down.

Grammy's Cottage

2010-07-20T21:29:00.006-04:00

We were able to get away to the quiet haven at my parents cottage last week. We had a very relaxing week doing some of Elizabeth's favorite things; catching minnows, fishing, swimming, playing in the sand, playing mini-golf and her favorite roasting marshmallows. We even found a museum nearby which had an exhibit on Dragon's which are close to dinosaur's on Elizabeth's list of favorite things.

Designs by Elizabeth

2010-07-13T05:56:00.006-04:00

We have had some rainy days here so when I was at work Elizabeth and Gram's got creative. Elizabeth continues to pamper her dinosaurs; they are her dolls she carries them wherever we go, she feeds them, she does shows for them and lately she has been making them outfits as well. Her latest designs were rain-gear. As you can see her Dino friends are all in matching raincoats and hats all designed by Elizabeth.

Good News

2010-07-11T21:58:00.002-04:00

I am pretty excited and feel like a big weight has been lifted off my shoulders. Elizabeth's new school called and had me come in to sign paperwork to get services (OT/PT) for the first day of school (I do confess to making a couple of phone calls and her dedicated Phsyiotherapist did the same). They also had me sign the papers to have their audiologist prescribe an FM unit at school which the school board will pay for. I have been pretty stressed about her entering school and ensuring her needs met but after hearing all that the school has done so far I am now excited for her to start.
Elizabeth is also pretty excited about school as well; she received a photo album from school with pictures of all the things she would be doing at school and she can't believe that there is a library there. She also already knows where both the Principal and the Secretary keep their candy which I am sure she will take advantage of.

2010-07-09T08:30:00.006-04:00

I have heard from the grapevine that Ramon is just finishing his visit in Montreal for his CME Medek therapy. Hearing that he was coming back totally pulls at my Mommy's guilt as I know how much Elizabeth benefits from his work. When we finished a long block in Fall 2009 Elizabeth came home and walked up a small flight of stairs independently and hands free, fast forward to today and we have not seen it again since. As you can see in the video Elizabeth enjoys CME therapy and works well with Ramon she never fought or resisted. We have all the boxes and lessons from Ramon from her past sessions but completing the therapy needs 2-3 adults one who has the strength and skill to hold a 5 year old in the air by her shoes. I can't help but wonder if we were to find a way to afford more CME therapy what would she be doing now?

End of School and a Snake Necklace

2010-06-29T21:35:00.011-04:00

It is totally bittersweet Elizabeth is done at her Preschool/JK. She has been at this school for the past 3 years and has played, learned, laughed and thrived in an environment that was perfect for her. I can't believe it was 3 years ago when I took her to see the school and then she was still crawling. Her teacher's now tell me they were really unsure how she would do as she was not walking but thankfully she did begin to walk 2 months before school started. Elizabeth was the first child to be integrated in their school and they accepted her for her not the difficulties she faced.
The small classes, interesting themes, additional French and art classes, how they celebrated Mother's day with a tea party and Father's day with a snack for Daddy before work and how they introduced academics in a fun way to learn. They always were interested in Elizabeth's well-being and every teacher knew her and encouraged her. The teacher's were very accepting of recommendations from her therapists, her fiddly FM unit and I loved that her teacher would even remove Elizabeth's AFO's to help her walk in high heels like the other kids.
Elizabeth celebrated the last of school at a picnic the school held. I think the highlight was the Reptile man that visited and brought all the things that Elizabeth loves. The snake necklace really made Elizabeth's day. We will miss her old school and the small safe environment they had but now back to big girl school and a new chapter in her life.

Dance Recital

2010-06-22T22:05:00.009-04:00

Elizabeth had her end of year dance recital in her adaptive dance class. The class worked so hard practicing all the steps and Elizabeth remembered the movements quite well. Elizabeth really enjoyed her dance class, her favourite thing about her dance class is the attention she gets from her helpers. Elizabeth has 2 helpers that hold each hand so she can complete the steps with their support. Her helpers are the sweetest girls who adore Elizabeth and are teaching her so much. On the night of the dress rehearsal her helpers were waiting at the door for her and presented her with a card wishing her luck and coached her though all the steps and how to present herself on stage.
I did not get to see Elizabeth perform as I was backstage to help her and supervise the class but from what I heard she did great. Hearing the thunderous clapping from the audience was proof that the whole class was inspiring.

Fatigue

2010-06-18T22:14:00.002-04:00

Elizabeth's Resource Teacher and I met to discuss her progress and her discharge. We were talking about Elizabeth's 'days' and how she fluctuates day to day for her need of physical support. Her teacher had said they often can know what day she is having if she brings her chair around in the classroom. On these days she often by the end of the morning has difficulty sitting on the floor so she will bring her chair during circle as well. Initially her classroom teacher would tell Elizabeth to put her chair back but after her Resource Teacher pointed out why she does this Elizabeth was allowed to keep her chair. This is a big change for Elizabeth as when she first started school she never sat down and then would be crying at home because her legs hurt. Her Resource Teacher has been a tremendous advocate for Elizabeth and we are grateful that she is aware of Elizabeth and her needs and can help others to be aware as well.
Now that it is warm outside and we are spending more time outside I notice she carries her chair around to play and help me in the garden. We really try to keep Elizabeth active and give her every opportunity to walk but after talking with her teacher I now know that I also to have be careful not to push her and give her legs a break.

2010-06-13T21:41:00.003-04:00

Elizabeth is doing great with her new bike. We have bought her a Triton 3 wheeled bike/roadster and she is now flying on it. I love that I am actually getting exercise as I am running to chase her and keep her from danger. She loves riding it and is getting quite daring. The steering was tricky for her to figure out and in the beginning she smashing into everything and we kept having to pull her out of bushes and off peoples front yards. She is riding further on this bike and our goal is to ride to a nearby ice cream shop. Everywhere she rides people and kids stop by and say how cool her bike is, we met some little boys and they could not wait to try her bike, even though it was pink. We still have to modify it with a proper backrest so right now we used bungee cords to tie cushions on it so she can reach the peddles. We just have to find a basket so she can bring her dino's for a ride.

The big meeting (game)

2010-06-10T20:52:00.005-04:00

We had our big meeting at Elizabeth's new school today. The meeting is to present Elizabeth's needs to the school where she will attend Senior Kindergarten, this is to let (or warn) the school what they need to prepare for the fall. Our biggest concerns are concerning; safety (during gym time, outside and in the halls), her needing assistance for changing her shoes and putting on her coat etc, a suitable/supportive chair for the classroom is available, having an FM unit available for her, the Itinerant for the Deaf assess her classroom and to provide support, having PT and OT consult and set the environment up for her needs and to ensure she is included in all activities to the best of her ability, equipping the bathroom for her independence (versa frame or grab bar) and ensuring her speech therapy is to continue.
We were lucky to have some of her therapists/teachers present at the meeting as they know her so well and are instrumental with the successes she has made. Her PT made it as apparent as she could that Elizabeth was not safe and requires close monitoring and equipment to maximize her potential but she is not able to outright say what she should receive (restrictions made by the organization CCAC that assesses her need for OT/PT). Her Speech Path on the other hand laid it out that Elizabeth has a moderate speech delay and should be getting the max 24 sessions.
The school staff that were present listened with interest and during the meeting seemed genuinely concerned with her needs and as they had met her they agreed with some of our concerns. Unfortunately the CCAC manager did not show up to the meeting as planned.
I thought things had gone well with the meeting until I asked when would we be hearing what services Elizabeth would be entitled to in the fall. Of course things became quiet and they said they would wait until the fall to put the paper work in for requests for service but she would recieve Speech therapy as requested by her SLP. I politely said I don't think this is the normal routine (I work for one of the agencies and know a bit more than the average parent)and will look into it tomorrow.
So tomorrow I will make some phone calls to find out the process and ensure things are ready the day she walks into her classroom. Waiting for the fall will not be an option. I am fairly aware that fall means maybe an October visit and then another month to order her chair and before we know it Christmas will come and she still will not have a chair. As for safety she is not safe at certain times and has to have support available when needed. I really hate playing this game, I try so hard to be nice and trusting and not get their backs up but now I have to be the pushy parent to get what she needs.

Art by Elizabeth

2010-06-03T19:50:00.006-04:00

Pretty much daily Elizabeth brings home pictures she has drawn while at school. I can attest that at least 99% of her drawings are of dinosaurs of some sort. I do beg and plead with her to draw me a picture of a butterfly, flower or a person and she justs laughs at me. I do have to say her dinosaurs are getting pretty good now.

The Game

2010-05-27T21:40:00.004-04:00

We have been busy preparing for the fall and all the changes that will occur. Elizabeth will be starting Senior Kindergarten (the school Superintendent has agreed with our decision to hold her back YIPPEE) and we would like to give my Mom a break from caring for Elizabeth so are trying to find a daycare for her to attend while I am at work. Elizabeth's big meeting with the school that she will be attending in the fall will be next month. This is one of the most important meetings; it will ensure Elizabeth gets the support she needs for entry into kindergarten and for her future schooling. To ensure she gets the most support that is available we must paint a picture of a child who relies on people and equipment to be independent and who is very unsafe (which is pretty true), we must make her appear very disabled. Elizabeth is in fact quite independent when changes are made to her environment to accommodate her. We will ask for the most services and support in hopes to get even picked up by PT and OT in the school (services here have taken a very big reduction).
In trying to find her daycare I am doing quite the opposite; centers that provide integration here are very limited which is very unfortunate. When explaining Elizabeth to the daycare I am calling I am not using all the labels she has been given which we will highlight at her school meeting. I tell the center she is a bit wobbly and may need a bit of support with some activities because if I do mention her labels I know I will get the 'I am sorry we cannot accommodate her' spiel. Once they meet her I hope they will she how determined she is and how she finds a way to keep up. I want them to meet her before they place judgment on her abilities by her labels. By omission and exaggeration I feel like I am being dishonest but I know this is how the game is played.
The Dr. Seuss game in the picture above is one of our favorites, it challenges Elizabeth with many gross motor tasks and before she completes the task she has to say 'I can do that' which of course she can but just with a bit of help.

SSSSteggie

2010-05-16T20:51:00.004-04:00

Elizabeth now can say the 's' sound. She has been working very hard at speech therapy for at least the past year and now can say 's' unprompted. I love how she asks for her dinosaur steggie, she pronounces the 's' sound so well, it warms me each time I hear her. We are now working on her 'sh' sound which is coming along and she can now say it with prompting. Above is a picture which she took of one of her 'crew' as she calls them she also has a t-rex, triceratops and a pterodactyl. She totes these dino's everywhere she feeds them, talks to them and dresses them. She also loves to bring them to us each morning when she wakes, a roaring dinosaur in your ear at 6:00 is not my most favorite way to wake up but they are the closest thing we have to dolls here.

Confessions

2010-05-08T21:39:00.004-04:00

I really try on our blog to emphasize all the amazing things that Elizabeth is doing because she wows us everyday but some days parenting Elizabeth is hard. It could be that Elizabeth is starting a growth spurt and I am sleep deprived because of her waking but I am finding myself short tempered with her. The things that she cannot control get under my skin and make me snap at her. She is very twitchy lately including in her sleep and her twitches include flailing limbs; her flailing knocks over drinks, sends cutlery flying, breaks things and leaves us in bruises. Her distractedness and impulsivity are pretty fierce right now and she needs constant reminders to pay attention to what she should be doing. I am constantly telling her to stop talking which kills me as we worked so hard to get her to talk but she often is too busy chatting to pay attention to where she is going and puts herself in danger. I hate to admit this but there are times when I want to walk without her because walking with her is still painfully slow. Because of her dystonic movements and her distraction walking with her feels like
I am in a funeral procession as we walk slowly to our destination.
I hate that I get upset with her because these are things that she cannot control. On a good day I try to teach her to be aware of others, slow down with her movements and think about what she is doing and we replay what she she should have done but on days like these I yell at her and put her on a time out which I hate. I constantly question myself am I being too critical, too short tempered and am I asking too much of her? I know I should be grateful of how far she has come along but sometimes I hate what her prematurity has done to her and how it has impacted our family.

Familymoon

2010-05-02T21:38:00.010-04:00

We had a great familymoon in Holguin Cuba. It was our first tropical destination with Elizabeth and we all had a great time. Elizabeth loved swimming in the pool and the ocean. She was doing great at holding her breath while swimming so she could see all the tropical fish in the reef. Elizabeth LOVES the sand, she spent the first 10 minutes rubbing her hands in the sand thanking us for taking her to Cuba. Elizabeth also loves all living creatures and took great pleasure in chasing the lizards and toads, collecting starfish, sea urchins, shrimp and crabs and watching the bats fly at night. The food was great and Elizabeth ate like a champ; she devoured calamari, fish, soups, ice cream and slushy drinks. She made us so proud in the restaurants sitting so still, trying new foods and using her manners. We went on a excursion to swim with the dolphins and it was fabulous, Elizabeth loved petting the dolphins, getting kisses and watching the dolphin show. Each night Elizabeth took part in the children's mini-disco, the staff were great with her and she loved dancing and playing the games. We are happy to be home now and I love the fact I am not running her to bathroom every 5 minutes because she has drank half the pool and that we no longer have to use public toilets (that often do not have toilet seats) but we will miss the endless fresh seafood and the lovely warm sun. What better way to spend our honeymoon than with Elizabeth.

Officially Official

2010-04-28T21:31:00.004-04:00

This event was well overdue but the wait was worth it. Elizabeth came early in more ways than one and Ivan and I getting married was put on the back burner. Ivan and I are fairly introverted people (except for the blog) and we wanted an event that was intimate and classy. I think we managed to do both we invited a small group of family and friends; had a ceremony at our local church and dinner at fantastic restaurant that we had rented out.
Elizabeth was great on such a busy day she walked down the aisle so proudly, by the time she got down there there was not a dry eye in the church including Elizabeth and her Daddy. She stayed with us for the vows and would say Amen at the appropriate times we were so proud of her. The only mischievous thing she did was trying to undo my dress, my maid of honour who knows her well was quick to intercept.
We had such an amazing day it was so great spend the day with our family and friends. We are so thankful for all the support they have provided us and that they were able to celebrate the day with us.

New Bike

2010-04-19T19:35:00.003-04:00

We are super excited Elizabeth's new bike has arrived and it is super cool. Thanks to my amazing cousin who is currently living in the USA she was able to bring the bike here for us. We ordered the bike through my favorite store Target which we sadly do not have here in Canada. I heard some really good reviews about the bike at work and on-line so we thought this would be the best option for Elizabeth. Elizabeth still needs her feet tied to the peddles so a 2 wheeler with training wheels was a cruel and unsafe option. This bike is so cool it will grow with her and can carry up to 220lbs, even Daddy has been having fun riding her pink bike. We do have to make some adaptations as she is still small for it and she needs footplate's to secure her feet but we should have it ready soon.

Not Invited

2010-04-17T16:20:00.002-04:00

I was unusually early to pick Elizabeth up from school the other day and while waiting for her a boy in her class was handing invitations to his birthday party. I saw all the kids eagerly waiting for their invitation as the boy handed one to each classmate except for Elizabeth and her fiancée (she is betrothed to a little boy in her class). I would have thought it was fine had it not been that the only 2 children who were not invited were the children who have a disability (Elizabeth's fiancée also has a physical disability) it was pretty obvious why they were not invited. My heart broke for them as their eager faces turned to a look of why not me. They are young right now and will not remember this incident but this will happen so many times in thier lives and it breaks my heart that they are going to feel rejected and left out. It is a shame that parents are so busy to not even notice how each morning Elizabeth greets her classmates and how hard she tries to keep up with the others. I guess as parents we need to teach our children to be resilient at times like this because some people are too involved in their own lives of ignorance to see how hard our kids try to succeed. They are the ones missing out because our kids are amazing little souls who have so much to give and to teach.

The Culprit

2010-04-11T16:38:00.003-04:00

We think we have solved the recent no eating / gagging / vomiting spell. I thought just before I pulled out her Prevacid and started her on Miralax I should put her back on Soy milk. Elizabeth has been on cow milk for the past year and from what I have seen has not had a problem with it; she does not have the typical signs of intolerance she does not have exema, loose stool and never has complained of stomach aches. I should really know better by now that Elizabeth being an ex-preemie her tolerance of pain is huge and even if she was in pain she would never have complained about it. That is probably why for the past couple of weeks her eating had taken a nose dive, each time she came to the table her face would change and she would begin to gag and really struggle with eating and those were signs she was uncomfortable which I was thinking was behavior. She has a tendency to get a bit constipated which with a careful diet we were avoiding the use of laxatives but lately she was getting really constipated. Within 2 days of switching her to Soy she is eating, occasionally will ask for food (this is a huge thing) and is eating in her terms faster and I think the major thing which allows her to eat better is she is now regular. I think back to the years of her constant vomiting and wonder how much of it was related to milk and how uncomfortable she must have been. We are so happy to have Elizabeth comfortable now and enjoying eating again.

Happy Easter

2010-04-04T20:50:00.003-04:00

We hope everyone had a good Easter. Elizabeth woke us up at 6:30 am, happily eating chocolate she had found from the Easter bunny. Her egg hunt had her following clues to find some treats and it was pretty neat that she could read most of them on her own.
We took Elizabeth to church on Good Friday and she stayed on her own with the kids in the sunday school. I told the Teacher that Elizabeth may need some extra help with walking and he concluded that riding on their donkey was the best way for her to get around so she quite happily rode around on a life sized donkey on wheels. She told me when I picked her up she even had her feet washed, I do see a green hue so I am assuming there was some walking in paint as well, I quickly learned that sending her in white and lilac clothing was not the best choice for Sunday school.
We completed our yearly ritual of taking her picture with the same Easter basket. The photo shoot was a bit difficult as Elizabeth was having a sugar high from all the treats she found at Grams. Sugar and food coloring for Elizabeth really don't mix, it is like kiddy speed, she goes wild.

Celebrations

2010-03-29T21:31:00.007-04:00

It has been 5 years since Elizabeth came home. I can't believe she came home this small and now she is 5 years old. Elizabeth is smart, articulate, kind, funny and loving. She works so hard at everything she does and never complains when it is time to work. Parenting Elizabeth is an honor and a blessing, it is her personality that makes parenting her so easy. Even on the days that are trying she makes you laugh and smile and appreciate every ounce of her.
We try to make sure we have a little celebration on the anniversary of the day she came home as that day really means the most to us, it was the day she was ours. We asked her what we should sing to her as Happy Birthday was not fitting, Elizabeth wanted me to sing the song from one of her favorite books 'I love you forever' by Robert Munch.
'I love you forever,
I like you for always
As long as I'm living my baby you be'
We love you Elizabeth.

March Break

2010-03-22T19:58:00.006-04:00

Last week was March Break here and Elizabeth had the week off. Between having some down time with Grams while I was at work we managed to fit in some fun activities. We visited the sugar bush with Elizabeth's friend Alex and went another time with Daddy; they played in the snow, ate lots of maple sap, maple syrup, maple candy and of course pancakes. We went to the Royal Ontario Museum with her best buddy Owen and his brother Austin they loved the dinosaurs, the bat cave and checking out all the child friendly displays. Of course as things are not good in the tummy department for Elizabeth she had one of her vomits in the museum, with the help of my best friend Amy and Mommy's quick instincts it was caught and disposed of before anyone had a chance to blink (I will discuss these woes in another post when I figure out what is bothering her). We also enjoyed a night away in a hotel with Alex and we took the girls shopping at a very cool mall that even had a racing alley with rides. Elizabeth also had her first real play date with a girl in her class, it was so sweet to see how well they get along and how appropriate Elizabeth was in playing with her. All in all it was a good week and we were lucky to have some nice warm weather as opposed to now where it is miserably cold and rainy.

Trotting

2010-03-17T21:53:00.005-04:00

Elizabeth has started trotting at her hippotherapy now and of course she loves it. Elizabeth and her instructor (with much of Elizabeth's persuasion) have worked out a plan, if Elizabeth works hard in her session she gets to end with a trot. It is just a brief trot but she squeals with delight when the horse speeds up. Watching her is like watching a rag doll being bounced around as she still has pretty low tone in her trunk but she hangs an with a big grin. She now is doing most of her session holding on the reins which shows how much of an improvement she has made. Elizabeth has tried a couple times to get her horse into a trot when she shouldn't but so far the horse has not been persuaded. Elizabeth is already upping her requests to begin jumping but for now we will keep with trotting.

Good-bye Winter????

2010-03-11T22:09:00.009-05:00

Our winter has been pretty pitiful in terms of Canadian weather. We have had small amounts of snow that melts as fast as it falls. I love winter and all that there is to do in the snow and cold and this year we really have not been able to do too much of it. We were able to go sledding twice, build a very very small snowman, construct a small fort (I had to use all the snow from our road to build half a wall) and Elizabeth got to graze in the snow. On the colder days we have been taking Elizabeth skating at local outdoor park and she really is getting better; she can stand independently for a couple of seconds and with her walker can shuffle a couple of feet.
This past week has been beautifully sunny and warm so we have been out bike riding and drawing on the driveway with her sidewalk chalk. We are not sure if this is a sign of spring or will we still get another cold snap with a dumping of snow, either way we will find a way to have fun outside.

Biting Fast

2010-03-07T17:00:00.011-05:00

That is how Elizabeth described the pain in her knee the other night. That night was one of the worst; she was crying, gagging and screaming out 'momma they are biting fast'. It was one of the nights where the only way I can get her to settle is to rub her knee until she falls asleep (after motrin, heating pad and rubbing cream).
We did see the Orthopedic surgeon and he had ruled out a knee injury and growing pains as it is localized. The surgeon's input was 'it must be behavioral, she should not be getting that much Motrin' needless to say I was very upset after seeing him if he knew us at all he would realize that this is not behavioural and that I have gone to great lengths to ensure that this does not turn in to a behavior issue.
The reality is Elizabeth has pain that no one can really figure out and no one can really give us options to prevent this pain. Elizabeth is right now out with the neighbourhood kids and her Dad and has been out for a couple of hours which means that tonight she will be in agony. Do I bring her in to avoid her pain getting worse or do I hope that in time she will get stronger and this will get better? I can't see how this can get better as each time she grows it starts up again as she becomes more unstable and hyperextends more. It really is a vicious cycle we want her to be active but at the same time we want her comfortable. Until then we might buy shares of Motrin.

Mornings

2010-03-02T21:42:00.002-05:00

I hate mornings, I am not a morning person and I really like/need sleep. We have a bad habit here and on the days I am not at work Elizabeth sits happily on our bed watching tv while I get a bit of extra sleep, this bad habit causes us to run behind in the mornings. Elizabeth also has a very hard time in the mornings she is often miserable, slow to move and getting her fed is painful. Breakfast is not Elizabeth's good meal, on an average she has 1/2 piece toast or muffin, 2 ounces of applesauce and 1 ounce of juice and this takes an hour at least. This agonizing breakfast leaves us running behind even more. I have tried pleading, feeding Elizabeth, yelling and taking her toys away but nothing works. The above picture I had told her she could not play with her toys before school as she had taken so long to eat, so instead she sat happily reading her favorite book about bugs so much for punishment..
To add to our morning drama a missing AFO or beeping FM unit will be sure to keep us from getting to school on time.

Olympic Spirit

2010-02-25T21:38:00.005-05:00

Elizabeth has really been enjoying the Olympics and we have been having some Olmypics events here at home. Elizabeth loves watching the skeleton race so we have devised a skeleton run with the board that Daddy uses to work on his car. Elizabeth has perfected the pose that the riders do with their head up and legs straight and squeals with delight as Daddy pushes her around the house. Using Ramon's CME boxes we devised a bobsled run with organza and a rubbermaid box, I am not sure what Ramon would say of his use of the boxes but at least we got the dust off them.

Helping Out

2010-02-22T21:24:00.002-05:00

Elizabeth loves to help around the house. I think partly this is because she likes to be by my side but she really is a big help. I don't mind her helping with laundry as it us a great way for her to work on getting up on her toes which is really difficult for her. She is also getting good at putting away her clothes, folding and she LOVES to help me bake (or snitch a couple of chocolate chips).

Cupcakes and Candlelight

2010-02-16T21:59:00.002-05:00

We had a quiet Valentine dinner together with Elizabeth. Dinner consisted of overdone burgers, salad and cupcakes which of course was consumed by candlelight. Elizabeth had helped make cupcakes and both her and her Dad took great pleasure in consuming them. Elizabeth and Ivan have a love for sweets that I will never fully comprehend, the way their eyes glaze over and the silence that fills the air as they enter pure bliss is something they have inherited from Grandma Ellie. Elizabeth was very happy Valentines morning to wake up to a new Webkinz; of course sticking with her girly theme it was a dragon which she named Valentine. We could not have had a better day together as a family she has comes so far since Valentines Day day 5 years ago.

FM Unit

2010-02-09T20:30:00.004-05:00

After much discussion with Elizabeth's audiologist and her ENT we have decided to try an FM unit to help Elizabeth hear in noisy environments. The FM unit is comprised of a small hearing aid/tube that is placed in her ear and a microphone that the main speaker wears around their neck. The FM unit allows Elizabeth to only hear the speaker not the environmental noises or her peers. Elizabeth's hearing impairment is quite unique, Auditory Neuropathy is a difficult diagnosis as no type of hearing test can really determine how much she hears or does not hear, the difficulty with AN is related to the static/distortion that interferes with hearing (think a static radio signal) and this also fluctuates day by day. The use of hearing aids is not helpful because they amplify the distortion/static.
Elizabeth has very acute hearing at home but when we are in a noisy environment her hearing is limited. Most often in a noisy environment we touch her to get her attention and then speak to her close face to face.
We have been using her FM unit for the past couple of months and do notice her being more attentive and not needing a physical reminder. Her teacher at school notices she is more attentive at circle time and during gross motor time she will follow directions without being asked again. I have used it when we go out grocery shopping and it is amazing, normally I have stop, yell her name or go and get her when she wanders off but with the FM unit she comes immediately and follows directions to get items with me only whispering.
The FM unit still is a bit fiddly as it falls out a lot and just recently she lost the ear piece. We are very thankful our insurance approved this as it very costly and we even were approved for damage/loss which I think we may need to use more than once. Hopefully one day they can find other ways to treat and test AN that do not include a cochlear implant because at the present that is the only way to remove the distortion.

Ballet

2010-02-01T20:13:00.002-05:00

We are totally excited Elizabeth is taking ballet and she is loving it. Through one of Elizabeth's teachers I had learned about an adaptive dance class that is in a town next to us. I took Elizabeth for a preview class and automatically knew this was a great class for her. The class is run by the owner of the dance studio and is aided with girls who are in the dance class prior. Each child is paired with a volunteer who guides them through all the movements. The class is no cost and the parents watch the class from another room. The fact that I sit for 1/2 hr is a bit odd to me as every program Elizabeth is in I am usually running around with her in a full sweat but I think I can get used to it.
The class is quite challenging for Elizabeth as it requires balance and stability and most of the exercises cause her to lose balance but with the help of her assistant she can follow the group. Elizabeth was so excited to be dressed in her ballet suit and once dressed proudly declared 'I think Jake will like this', Jake is a little boy in her class who is just as spunky as her. At the end of the year the class will put on a recital which I will be there beaming.

The Principal's Office

2010-01-27T21:46:00.004-05:00

We have begun to register Elizabeth for school at the catholic school which is in our area. As usual things are not easy with her next transition. We have put much thought into where Elizabeth should be in terms of grade level because according to the date of Elizabeth's birth she should be placed in grade 1 next year. Here the cut off for the school falls in December and if you are born before January 2005 you are to be placed in grade 1. We are not comfortable with her beginning grade 1 for a multitude of reasons and therefore are asking for her to be placed where she would have been if she was born at term (she was due March 2005). Placing Elizabeth in a grade 1 class full-time is setting her up for failure; we know she has delays in many areas and she will never keep up with her peers at a level which they can but there are some areas where she will be close if she was allowed to go to school with kids who were born close to her due date. This extra year of her being at home half time would allow us to continue what we are doing at home, in gym class, in physio and at speech. We are not the only people who feel that Elizabeth should be held back; her teachers, resource consultant, therapists and her Pediatrician agree with our decision.
Because of our request things are not going well with her enrollment and I think the school is trying to find a way to exclude Elizabeth. There have been questions regarding our faith as we are intending to enroll Elizabeth in a catholic school despite the fact we have followed what is required by the school board. Dealing with this principal makes us wonder is this the right school for her as it does not seems like she is even wanted. If they do end taking her (to SK of course) will they accept her or will they treat her badly because we have questioned their policies (which I have read and recited to the Principal)? I have tried to be fairly nice with the school but nice may not be cutting it and we may need to go higher up to reach a decision. We are now waiting to hear back from them and when they are to 'assess' Elizabeth at her pre-school, if it is a no we will have to resort to plan B which may include moving to get her into a public school with a decent record. Wish us luck, lots of luck.

Spelling

2010-01-16T22:26:00.006-05:00

Elizabeth is learning to read and spell now and is amazing us her with her ability to read. While I was making dinner Elizabeth was working away at her easel spelling words and drawing a picture of each word. I had to clarify the first word with Elizabeth and she agreed that it did spell boob and beside it was a drawing of a boob. I just hope that is one picture she does not draw at school.

An Emergency

2010-01-16T21:59:00.002-05:00

Of course these things always happen on a Friday afternoon when the clinics are closed for the weekend. Elizabeth's AFO broke, the hinge that keeps the top and bottom secure and which give her movement cracked and the screw popped out. For Elizabeth this is a bit of a catastrophe as her AFO's are her legs; they keep her stable and prevent her from doing further damage to her knees. Elizabeth rarely leaves the house without her AFO's on as she is not safe. I immediately sent an SOS email to her Orthotist but of course he is out of the country for the week.
Luckily Elizabeth still fit into her old butterfly AFO's so she has spent the week in a very short butterfly AFO and a somewhat short ladybug AFO. Becasue of her not growing much over the past year and a half we missed disaster and are coping with her mismatching AFO's. Without the mismatching pair of AFO's she would have had to spend the week at home (which she would not have minded at all).

A White Lie

2010-01-12T21:35:00.005-05:00

I did it again, a little white lie to appease one of Elizabeth's Doctors. In December we met with one of her Neurologist's and I had mentioned that Elizabeth had been having the nightly pain in her knees and that she was becoming tight in her hamstrings and rotators. We are definitely concerned with Elizabeth's new found tightness as she is more of a low tone kid and her higher tone is causing difficulty with her sitting. Because of our concerns her Dr. wanted to start a trial of Baclofen. Baclofen is most often used for children with very high tone as it is a muscle relaxant. Baclofen can have side effects of drowsiness, dizziness, vomiting and weakness. Baclofen will reduce Elizabeth's tone and would make her difficultly with walking worse and her hyperextension worse. Despite me trying explain that I did not feel this was the best option for Elizabeth she hurried us out with a script for Baclofen and I was to call in 1 month to let her know how it was working.

After having a chat with one of Elizabeth's other Dr's it was agreed Baclofen was probably not the best option for Elizabeth. So to avoid getting kicked out of the specialized clinic (we have been kicked out of a clinic before because I sought a second opinion) I told a bit of a white lie I called and said that we did try the Baclofen and it made Elizabeth worse with her balance and mood and we stopped giving it to her. I felt really bad in doing it but it is also important that we stay in the specialized clinic.

These times really make me wonder if I did not have the educational background as a Nurse for children with Developmental Disabilities where would Elizabeth be? I just think of the many families I meet who english is not their first language or the parents who do not question their children's Doctor what happens to these children? Sometimes Doctor's are on their own agenda and no matter how you try to explain your child they are not listening because of this I have to sometimes tell a white lie.

Knees

2010-01-10T21:11:00.005-05:00

Elizabeth's poor knees they are causing her so much pain and discomfort. This has been going on for the past year and it comes in spurts but this week has been horrible for her. The pain we think is related to her hyperextending her knees with the most strain on her Rt. knee, when she walks or stands she pops back her knee for stability (as you can see in the picture of her Rt. knee). Certain activities such as bike riding, swimming, walking without AFO's, sitting in the car too long and extended walking really aggravate her pain, we try to be be careful but at the same time she needs to keep active to keep her strength. We have tried so many things to prevent her knee pain; rigid AFO's, AFO's up to her knees, a Benix knee brace, kinesiotaping, heat, Motrin (we are going through a bottle a month), massage and creams. Elizabeth during the day does not complain regularly of the pain but lately she is chewing her fingers and when asked she says her knees hurt, Elizabeth describes her pain as 'a hundred owies biting my knee'. Nighttime is the worst time for Elizabeth, she is up for hours and up frequently in the night writhing and crying. Her sleep lately is so disturbed that she is wetting the bed and during the day she is miserable. During the night we use heat, her Voltaren cream and Motrin and that lasts a couple hours and she is up again. I try not to get in the habit of sleeping with her but on some nights the only way to soothe her is by rubbing her knees. Lately we all have been miserable as we are all very sleep deprived. I talked with her Developmental Pediatrician and she was able to get us an earlier appointment with the new Orthopedic Surgeon as she is very concerned. We will see her Pediatrician for a check up this week as I just want to make sure there is nothing else I have missed and it is not a referred pain. She will also go and see the Orthotist to review her AFO's and see if there is anything else we can do to her AFO's to make her comfortable. We are also starting another block with her PT to work on strengthening to hopefully help her not put as much pressure on her knees. I so worry what it will be like for her when gets older, I see what her dystonia/ataxia/hypotonia (still waiting for a diagnosis) does to her little body now and I cringe to see what it will do to her as she ages. My last thing to try is for her to see a Chiropractor I just need to find some extra time in her busy schedule.

Gymnastics

2010-01-05T21:08:00.000-05:00

We have come to a point with Elizabeth where physiotherapy sessions were not benefiting her as a child as a whole. Elizabeth does well at physio she does what is expected and works hard but it must be stressful for her to have to comply while being watched and coaxed by therapists. She was not being socialized with other children only to adults in her weekly phsyio. We enrolled her into gymnastics and for the past year and a half she has been thriving in gym class. In gymnastics Elizabeth is being challenged physically and she is also being socialized with other kids, she is waiting her turn, talking to other kids and getting out in the community.

Elizabeth loves gymnastics and her long time teacher loves having her in the class. I stay with Elizabeth and help her as she needs help for most things, Elizabeth is not physically able to do what the other children can do but she is mastering things on her own pace. Two of the biggest things she can now do is jump on the trampoline (she can actually lift her feet up and can jump for up to 5 consecutive jumps) this is HUGE for her. The other thing she can now do is when holding onto the uneven bars she can lift her feet to the bar, when we started she could not even bring her legs up an inch.

What I love about her current gym class is there are only 3 kids in her class and they have the gym to themselves. Distraction is still a big issue for Elizabeth and the limited kids keeps her engaged. We just have get her teacher to pay as much attention to the other kids as she does for Elizabeth as you can probably see the poor little guy in her class is bored to tears, I spend a bit of my time in the class praising the other kids as they feel a bit left out. Elizabeth still goes to biweekly physiotherapy as it is important that a trained professional keeps an eye on her and helps her progress but being in the community is just as beneficial.

Happy New Year

2010-01-02T21:48:00.002-05:00

Another year has flown by and 2010 is here. We have had a pretty quiet Christmas vacation and are trying to find things to do in a very cold climate with NO snow (it is pretty crazy that here in Canada on Christmas Day we had rain and worms were actually on our driveway). Daddy has been very busy renovating our bathroom and I have been trying to keep Elizabeth busy and active. Elizabeth was out of commission with a respiratory bug since her birthday and took a good 10 days to get back to herself. We had many trips to the Dr's and of course her vomiting started again due to her cough. With puffers and antibiotics she is now cough free, we are now hoping her vomiting goes away as it seems like her old habit of getting upset = vomiting is back.
We celebrated a quiet New Years as just before we were going out Elizabeth got upset and vomited her big New Years feast so we decided to call it quits and hang out at home. New Years day I took Elizabeth to our local recreation center and she was able to watch Ice Carvers carve the Olympic Rings. Elizabeth had the most fun playing in the debris the carvers left as it is as close to snow as we are getting now. We were able to get a way for the night with a good friend up North and she loved swimming in the hotel, playing in the snow, snow tubing and eating snow.
We wish everyone a healthy and happy New Year.