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.

Ashley's 2nd year

Next month I'll be planning Ashley's third birthday and I can't wait to celebrate it. Her second year has gone by so quickly she made such amazing gains. Last year just before her 2nd birthday she was fitted for an Otto Bock feeding chair and special needs stroller. She could not support herself sitting in her high chair and would keel over to one side or the other she really need the side supports offered by the special needs seating. She also was fitted for a stander which holds her up in a standing position for weight bearing which was very important for her bones and muscles she was spending a lot of time lying on her back since she could sit up. She also had surgery for a feeding tube and I returned to work 3 days a week. That really was a lot for mommy and daddy and especially mommy ..the ever optimistic side of me never really wanted to admit hard it was but it was very emotional. I wanted everything for my little girl and birthdays can be little hard for some reason as she wasn't one anymore she was two and should be sitting and eating and walking.



The concern i felt on her birthday i wasn't going to dwell on too long instead i felt i had to take action and seek out more help for Ashley. At 25 months we purchased her first Nordic track tread mill, i made many calls for weekly OT therapy to ensure it continued and tried to tell myself my job was important and necessary. We focused on feeding and physio the days i didn't work she went for physio she has the best therapists. We would also squeezed in OT, Feeding or Speech after physio and she would fall asleep during her second therapy session of the day so it wasn't working to well. After about six months of working i knew i couldn't continue to leave Ashley for three days a week to work it didn't sit well with me she needed mommy and more time that was the best change ever.

Heading home from the NICU

Every day in the NICU is a long day there is so much to be concerned about, your childs life is in jeopardy, your dreams have been forever changed and there is little you can do but pray and stand by your newborn babes side. We sang and read to Ashley all the time it was the only way to comfort her when we couldn't pick up your newborn and cuddle them. They also many other sick little ones around and many many worried and devasted parents. I remeber just getting by sometimes minute by minute at time i called one of my friends often to tell her i thought Ashley would be discharged within the week.. she really must of been wondering what i was thinking as i coutinued to tell her that same message week after week until she finally came home from hospital at 7 1/2 weeks old. i couldn't think further ahead then another week.. the idea of being there for many weeks or months wasn't something i could handle at the time.

This is the photo i took as we headed home from the hospital for the very first time ever Ashley was 7 1/2 weeks old that day. She was finally going to see her beautiful home and sweet nursary. She was dressed in a beautiful dress from the gap a very close friend gave her the day she was born.

March 2005 - Now Mommy to three

This is my first attempt at documenting the past 2 1/2 years with my three kids and it has certainly been busy to say the least. I have a 7 year old James who is very curious, energic and too smart for his own good if that is possible. A 5 year old that is the most artistic, sweet, caring and loving boy ever. And Ashley my miracle child, she is a total princess and such a blessing. She reminds me daily that i have so much to be thankful for.. starting with her beautiful smile and that opportuntiy to watch her grow and develop. When i was expecting Ashley in 2005 .. i thought most kids were born healthy honestly i was more then a little nieve i have to admit i just didn't know any children with disabilites. I wasn't worried when the doctors thought my baby may be a little small i thought i was having a girl and hey I'm not that big myself even at the age of 33 of course my little girl will be petite. I wasn't worried yet just excited for lay ahead.

My mom and dad had a arrived that weekend Ashley was born it was Easter 2005. I was so happy i showered us presents for our precious little girl, they were so excited for a granddaughter. I remember the fun of opening the little dresses and a cute girly things they had given to me just two days before she was born. I remember feeling excited and carefree ... i don't think i really had much to be really stressed or worry about prior to Ashley being born my boys were beautiful i had a husband i loved and a great job too. I would like to feel excited and carefree again.. i think in time I'll get there. I feel like roller coaster of the last few years isn't really over yet but it is getting smoother with time.
I was feeling pretty lucky to have two amazing boys and very excited to be expecting my third a little girl. At the time I thought for the most part kids were born healthy certainly my kids were anyways. I just truly had no idea how bad it could get for some newborns and unprepared parents. So i certainly was in for a shock when my beautiful little girl Ashley was born March 27th 2005. She had strawberry blond hair and sweet blue eyes and was just 4lbs 9oz and cute as a button.

She was whisked away to the special care nursery as she needed some oxygen. By the next morning she was getting sicker by the minute needing more oxygen and special positioning to maintain her oxygen saturation's the doctors where puzzled as to what was wrong. Her blood gases where taken and the results were alarmed .. she needed to be immeditaly transfered to Sick Childrens Hospital for care.

Just one day old and heading for the Neonatal Intensive Care Unit. We were told they had been called and to wait outside the nursary as they got her ready for transportation. I remember waiting with my husband for what felt like forever .... it took 7 hours to get her ready as she hanging on by a thread we almost lost her a few times that day. We knew they were taking care of her and we certainly didn't want to interput them it was an agonizing wait. We would get breif updates but they weren't the reassuring messages we were hoping and praying for.

The transport team revived her intubated her and finally wisked her away. They were so professional and caring ..they told us she had a big fight ahead of her and be prepared for things to get worse before they get better. Boy that was good advice because we went down that road. At the NICU she was so sick we were told she had sever pulmonary hypertension of a newborn they had no idea and why and if she would make it. I asked the neonatalogist why this happend and he just said it was a mystey.. boy that was scary. Not having really known to many people that were sick... i used to think that doctors had answers . Ashley was just two days old and it was totally heartbreaking to see her .. with all the monitors and IVs she had few trees of IV hooked up to her and was on a occilating ventilator it shock her rapidly puffing air into her lungs to help them expand. She was given a drug that comatized her so she wouldn't move, eat or poo .. all her little body had to do was concentrate on breathing she was just too sick for anything else. She was critically ill there was no denying it.

A week later and things where looking up for a day or two:
The intensive treatment was working.. .she was slowly weaned to a conventional ventator after a few days and taking off the coma drugs so she could move, and even poo. It was so precious to see these changes. This was so emotional for all involved it seems i couldn't image anything worse then what was happening at that time.

9 days old and further trouble .. clots and strokes scary side effects of ICU treatment.
But by 9 days old we learned she had suffered a blood clot in her heart in a very scary place on a valve leading to the lungs. .. the doctors where very worried it was clear and they openly told us that. The schedule an MRI at 9 days old to check her brain to ensure there was no bleeds .. the news was bad they found a bleed we were told she suffered a blood clot and a small stroke (the bleed) they probably occured at the sametime with a small piece of the clot breaking off and causing the stroke. It was in the movement area of the brain but it was just small. The normally always treat clots as they are scary if they move to the brain or lungs can cause serious problems however .. they couldn't treat a clot when they know there is a bleed . The treatment could cause further bleeding in the brain. They had a meeting with many doctors the stroke team, hemotologist, neonataologist.. a number of people where there they decided it was to risky to treat my little girl clot we had to wait ten days and see if the bleed it stable or smaller. It was all so terrifing I remeber being happy we were waiting .. not sure what the worst of to evils treatment or waiting. I was happy and scared to wait.