Wishing you all Merry Christmas

Finally Pictures and a Name

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

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

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

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

"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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 
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

 

 

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

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

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.