Off to Ottawa

We all travelled to Ottawa to see the boys off for a few weeks of fun with Grammy and Grampy. Here's the kids during the trip they did great despite being very excited to arrive and swim in the pool.

Saturday we had a barbecue dinner with Aunt Marion, Uncle Al, my cousin Kari & Mike and their son Noah. Isn't he cute he just turned 4.

Below are pics of Blake, Damon and James playing Wii Rock Band and swimming at Brett's pool on Sunday. They are having lots of fun already and didn't mind that Mommy and Daddy were heading home for a few weeks without them. It's really quite at home now.

Can it get any busier

June is coming to a close and this month must have been one of the busiest I can remember for appointments, therapy sessions, and events. I felt overwhelmed a number of times I have to admit. It went something like this. A whopping 26 appointments this month alone

• 10 for physiotherapy (CME therapy)
• 4 for Augmentative communication,
• 4 for play therapy
• 2 for occupational therapy
• 2 dietitian and feeding therapist
• 1 Early intervention & 2 with potential new nursery school
• 1 SPOC (Single plan of care meeting) basically a team meeting with all therapists, case manager and service co-ordinator.
• 2 medical appointments

Not to mention we also attended a graduation, wedding, parent conference and parent advisory council for the Children Treatment Network. We reduced Ashley's (tube feed) calories and convinced her to do some eating and drinking. Ashley also progressed with her toilet training routine and manages most #2 and a few #1 on the potty! And I never forgot about the boys.

Ashley was a real sport to get through all this. Next month I'm setting more time aside to breathe before potentially starting back to work again in August.

Super Mom

Take me out to the ball game!

Kindergarten classes are complete, baseball is in full swing. Just one more half day of grade 2 for James. The boys are off to Ottawa for some fun with Grammy and Grampy in the next few days. Excitement was in the air. Damon couldn't leave class any faster today.

Baseball

James hit a home run at tonight's ball game. He has tons of confidence he says to me "Mommy get ready with the video camera I'm going to hit a home run now" as he walked up for bat. Your thoughts truly are your reality. Boy did he accomplish it too. Way to go Rebels! Celebrations on the bench.Here's the part I caught on video. He made it all the way home but I need to improve my camera skills.

Now the good news

Ashley really wants to drink from a cup .. she enjoyed milk again today about 10 sips!!! YIPPEE I know that doesn't sound like much but for Ashley it's fantastic.

Now i think I'll shop for bibs with big pockets to catch as much spilage possible.

not so great news

I learned today that Ashley recent blood work results came back and she has a slightly elevated TSH level which can cause weight loss (oh my god). The endocrine clinic called and asked that she come back in August to repeat her blood work.

I'm so glad that i followed my instincts and kept asking to be sent to endocrine. I must have asked at least 4 times before she got the referral.

Hopefully in August when we take the test again everything will be normal but if not it is nice to have answer. This is something that can be fixed now that we know about it.

Milk

Reduce Tube Feeding in order to increase appetite and desire to eat. Slow and painful process this is and it requires lots of patience and anixety meds (recommended for mommies attempting this). I love to get Ashley eating again but in order to do this she has to be hungry and considering she has been fed a round the clock since she was born she might not even recognize the feeling I've been told. I've ordered as many books on this topic as I can find. And I'm excited to start feeding her again i hope she doesn't hold out too long .. i plan to cook up as much yummy food as i can and let her play and hopefully lick smell and ultimately eat something.











At dinner she was reaching for my glass of milk. She enjoyed a slip and made a little mess as well. But we all cheered when she drank some it was great. This would be neater with water but that won't have any calories now would it. Sippy cups also less messy but t0 difficult to use.

Time with friends

Ashley and I enjoyed some time with baby Alexa, puppy Merlot and Carm in her garden which was so nice i had to take pictures. Ashley was all giggles.

Speech

I'm more then a little frustrated with speech therapy lately.

I been basically told that I'd be wasting my time and money getting private speech therapy for Ashley. Her CDA and SLP both prefer to wait and see but I badly feel the speech areas of her brain needs to be stimulated. Sooner the better i would think. I'm not an expert at any of this but i know she can learn and I have tons of faith in her.

She stares at your month when your talking to her and while working on sounds she moves her lips to the correct positions very nicely and this week was able to make the "mmm" sound we were working on it. Her CDA therapist was pleased and noted it down but still maintained her coming once monthly would be plenty of therapy for Ashley.

If we waited for her to step before i got her the treadmill we could still be waiting. I just want to learn what speech therapist do so I can have a successful home routine and I'm not ready to give up or wait around forever either. It also sucks that you age out of the government speech program at 4 1/2 years too and many kids age out before they are ready for blocks of speech. Just letting off steam I guess.. as i've already written to my MPP and still need to get this off my chest some more. I guess if Ashley is working so hard at learning to talk and walk I can learn how to really complain and be heard. That I'll be working on. As well as hiring the best SLP i can find.

Physio

Ashley is always amazing me...(so is Joanne she is very skilled) Damon was our photographer and the timer he counted until about 75 when we decided she could stand on baseballs all day and we need to find more ways to challenge her balance centre. Just another day at physio.

Weddings

I had the pleasure of attending a friends Wedding in Ottawa this weekend it was so beautiful. A really nice country setting and yummy food.

My First attempt at adding pics

She is now able to sit with us all at our new table. It's so great ! And the Tripp Trapp Chair is cool too bright red.

Ready for Grade One

I can't believe my son is six already and has graduated from Kindergarten. He made such a good impression on his teacher. I think he was her favourite he is a true sweet heart. He's now reading more and more and is even a little excited for grade one. I'm so glad he got to spend so much time at home with mommy on those alternating days off I'll miss having him with us on those trips to sickkids and even to physio he was so well behaved and never complained know matter how long any appointment took he has tons of patience for a six year i tell you.

Really Blogging

I realized that if I'm ever going to actually have an active blog i better just start writing about the here and now. Way too much has happen over the last three years to do it justice with my writing skills anyways.

So June 2008 it has been very crazy to say the least Ashley has had a minimum 7 to 8 appointments every week for the last 3 weeks going on a 4th week of that now. Today i booked two after school playdates for James at the same time .. so i think i have to slow it down just a little and keep better track of who is coming and going. I took Ashley to see Ramon Cuevas (CME medek therapy creator and amazing man) last week he just oozes optimism and is loving and caring. We are going back to see him tomorrow and I can't wait. Ashley also started a block of augmentative communication with PECS and a switch she gets it but it's still going to take some time .....just the feeling i have so far.. But best of all because i begged and cried her therapist who is helping us with the PECS spends 10 mins at the end of each session on PROMPT therapy which means she is showing Ashley how to make P sounds with her lips with tactile kinestheic input.(guiding her lips in the correct shape) .. after showing ashley the P sounds a number of times and saying Ashley turn.. Ashley formed the P sound with her lips and she tried to make the noise boy did she surprise her therapist. Who was doing the PROMPT stuff i believe only because i broke down crying and begging for it. To say the least i was totally delighted and knew she could do it!!!!

We also visited endocrinolgy and learned that Ashley is 3 s.d (standard deviation) off the average height of a 3 year old and 4 s.d off the average weight of 3 year old. They were concerns more about her weight then height which is the norm for all the docs we see. 4 sd is about 7-8 pounds. But I'm getting used to fact that she going to thin and didn't get to worked about it despite seeing the concern in the doctors face.

She is sitting beautifully straight as can be rarely falls over unless she wants to and loves her new red TrippTrapp chair especially the fact that she sitting at the table with her brothers rather then in a high chair. It's so nice. wish i new how to add pictures here because i think this calls for one.

My boys are loving baseball and have no trouble getting on to base and James has even hit a home run. Was he ever thrilled it was so exciting to see.

That's about it for now .. I'll post about Ashley attempt at a reduce tube feed calorie diet in order to get her oral in take increase next time. That is a story in itself.