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.