All Avery, All the Time

Avery's Artwork - A Heart Person!

2012-02-13T19:42:00.000-08:00

Morning Cuddles

2012-02-04T11:52:00.000-08:00

They all cuddled around Ave this morning...quite the motley bunch, no?

Cute Aveism

2012-01-13T17:14:00.000-08:00

"Need lolly with ice cream" to refer to a dilly bar.

Did You Know that Avery is Best in the World?

2012-01-04T08:20:00.000-08:00

About 2 1/2 years ago, Charlotte made up her own little song to a very young Avery (~six months old).

Now they have both got together for the "re-mix".

D-D-D-Dora!

2011-10-31T20:47:00.000-07:00

Avery's First Day of Preschool

2011-08-31T19:18:00.000-07:00

Ave started school today at Renfrew in Sundance. She is in a class with two, three and four years old with varying degrees of delays. She was the most cheerful kid there (IMO) but was dwindling after the mere hour we were there! Tomorrow begins the first full day of school where she will take a bus and be gone for three hours a day! (I bet she falls asleep in her dinner tomorrow night!)

I arrive...I look stellar!

Time to go through all these books...don't worry - none of those books will be left standing after I'm here.

Daddy needs my help with the flaps!

Now it's play-doh time! I just love the duck and butterfly stamps!

After 45 minutes, I'm exhausted. Time to power up with some AJ!

Really didn't want to commit to a picture with Mom and Dad...I had stuff to do (like cocoa-bonk Dad in the chin!).

I felt that the only way they would let me go was if I looked at the camera. I made my escape mere seconds later!

What? Me, tired? What gave it away? The sleepy eyes, the hair pulling, the comfy corner I found?

To Steal a Strawberry!

2011-07-26T17:45:00.000-07:00

So say you're two and it's your first visit to the garden. It is at that time that you spy a strawberry on the vine and, given that it's one of your favorite fruits, you then attempt to nip one. Here's how you go about it...

1. Spy one.

2. Assess your chances.

3. Realize that just putting it in your mouth will save you from having to remove it from the vine.

4. Enjoy your first bite.

5. Go back at it again.

6. Enjoy your second bite.

7. Successfully retrieve the rest of the strawberry with that bite. Ensure you sit in the wet dirt to fully appreciate the moment.

Sleepy Girl!

2011-07-02T20:30:00.000-07:00

Going, going, gone!

Perfect Summer Pics!

2011-06-25T17:33:00.000-07:00

Look at this happy girl and all this pretty summer color!

Avery Loves Big People Shoes!

2011-06-13T17:28:00.000-07:00

Avery will wear just about any shoes she finds around this house. Yesterday I was lucky enough to catch her in my heels, sans attire and out in the beautiful sunshine. It was all she could do to walk around but she was pretty pleased with herself....

Love Wheels!

2011-06-05T15:31:00.000-07:00

Chalk Drawings with Auntie Paula

2011-06-05T15:28:00.000-07:00

Dental Surgery All Done!

2011-06-02T19:32:00.000-07:00

Ave had ten rotten teeth out of sixteen. She got root canals and crowns on her molars, white fillings in another three and three yanked out. She was pretty good about most of it (esp. beforehand), hated the IV and wolfed down some food before we even left the hospital. She is at her grandparents tonight so she is pretty much back to normal. Whew!

Now she's toothless, drooly and sleepy...but back to smiling!

Back to the Old Plan for Ave...

2011-05-18T22:35:00.000-07:00

Had Ave up at the Child Development Centre for her speech/physio/OT appointment today. After talking with her speech therapist about her upcoming dental surgery and her lack of improvement in putting together sentences since her last appointment in March, she is going to reassess Ave to get her preschool funding for September. That means that Ave will be headed to school for a few hours each afternoon, five days a week, with a class that will include all the speech, physio and OT aid that she may require.

In addition, we need to work on stretching her hamstring on her right side to get it looser. If we fail to do that, and her tendon stays tight for an extended period of time, she would have to start getting her leg casted to modify the way she uses her legs. Hmm...curious to see if she lets us do it!

Lastly, I think I will try to find her a more supportive chair (like the one in the picture) for when she works on fine motor skills or reading. She tenses up so much without support and as such, she is not giving 100 percent attention to the task at hand.

Oh my! There's always so much to think about for that little girl!

Just got back from the hospital dentist...

2011-05-06T15:59:00.000-07:00

On June 2nd, Avery will go in for day surgery at the Children's Hospital. She has to have four root canals, fillings where possible, and although they will do their best to avoid it, her four front upper teeth extracted. Without insurance, it is $2600. Since Brad just started at Telus this week here's hoping there's no delay on that paperwork. I am going to take June 2nd off, I get June 3rd off (since Cenovus has the first and third Fridays of the month off) and then we will have the weekend off to get her back on track. I am not looking forward to it but, for the sake of her dentists, I am glad she will be sedated.

P.S. A doctor and nurse will attend her surgery to keep tabs on her heart plus she will be pre-medicated with antibiotics.

Cuteness personified!

2011-04-10T09:29:00.000-07:00

Avery's Ragtime Band

2011-03-23T20:48:00.000-07:00

Avery has a laptop that plays songs. She often goes over to her toy corner in the family room to press some buttons and sing along. As you can see from the pictures that follow, her typical M.O. is to kick a button and then sing along with her microphone. When real ambitious, she gets the bells going and plays for more than half-an-hour with all her limbs a-flailing!

Avery's Chatting Up a Storm

2011-03-16T18:01:00.000-07:00

Avery had her preschool assessment last week (i.e., her speech language pathologist and physiotherapist gave her a series of tests to see whether she would get funding for special ed preschool). Well, Avery's language has improved so much that she is now in the 15th percentile for expression (which is almost in the typical range for her age). She won't get funding (so sadly there will be no preschool this coming fall) but she is doing gangbusters (using words for commands and putting together three and four word sentences from time to time)!

What she started with: mom, dad, more, done, no, out...
What she has moved on to:

Repeats a great deal of words when pointedly told.
Knows all the family names and will tell random people who we all are.
Calls out "Skipper" in a super-loud voice (esp. when she decides to give him treats or water out of the fridge spigot...she makes a big mess but she likes being in charge of him. She tries to feed him water out of a cup like her "babies". It's all very cute.)
Knows "drink", "juice" and "milk". Favorite words are "cookie" and "yogurt".
Still has to be prompted most times to say "please" and "thank you" but Jing is drilling it into her.

Puts together words for certain scenarios (e.g., when going out, she says "jacket", "backpack", "boots" and "outside").
Mimics most words in all songs she knows even if they aren't always close. She loves music!
Knows all of her alphabet and numbers to 20 (and never misses one!).

I'm sure there is lots more that I am forgetting but she is really starting to keep up with her peers in vocabulary and following simple directions. And, even if she doesn't know the words, she still bosses around all the kids her age! She rattles on and they just let her (I guess she likes to hang around the passive kids!).

Avery and her friend Nora...

2011-02-24T14:12:00.000-08:00

Avery and Nora have playdates from time to time. Avery blathers on to Nora and tries to boss her around but nobody understands what she's saying!

Ave's Story

2011-02-09T08:50:00.000-08:00

Blogged this for CHD week. Wanted to put it here too in case the other blog ever "disappears".

Diagnosing Avery:

I was out for hours as result of the anaesthesia (I have low blood pressure so that’s my “normal”) so my husband spent the first few hours cuddling with Avery all alone. While she had excellent initial Apgar scores and was quite tranquil (unlike a lot of the other babies that night!), at about the third hour, my husband then noticed that Avery’s breathing seemed a little laboured/congested. The nurses also determined that she was starting to turn blue so they then did a reassessment where they found her to have low oxygen levels. Initially, they placed her in an oxygen tent which had little effect. Then, and since she was slightly premature, the nurses gave her a nitrogen blast (in hopes of opening up the alveoli to boost her levels).

Given that neither of these two treatments mollified the situation, it pointed to a cardiac versus a respiratory issue. The residents then performed an echocardiogram which proved that Avery had transposition of the great arteries. In this situation, the pulmonary arteries and the aorta are physiologically reversed. As shown in the image below, the oxygen-poor blood that comes back from the veins merely travels in a circle through the heart and never heads to the lungs to get re-oxygenated. Without repair, this defect is always fatal (in most cases, 95% of infants who do not have surgical intervention die before their first birthday).

Treatment Begins:

Calgary and Edmonton have some excellent pediatric cardiologists (particularly in the area of catheter procedures). We were at the Rockyview so both she and I were prepped for transfer to the Foothills (since it is all closely entwined with the Children’s Hospital and University training programs). Since I was still drifting in and out of consciousness, I found it hard to concentrate on what I was being told early on. It was at this time I first saw Avery…strapped to a full stretcher and with any number of machines connected to her, I turned to mush.

After arriving at the Foothills and being prepped, and at a mere eight hours old, Avery had her first surgery…a catheter procedure called a balloon atrial septostomy. Going in through the umbilicus, a catheter guides a balloon to the foramen ovale. That ovale is a hole in the heart that allows for blood mixing while an infant is in utero. Once a baby is born, the hole closes since, in a normal heart, blood mixing is no longer needed. As a way to keep Avery’s oxygen saturation levels high enough until she could have open heart surgery, the pediatric cardiologists inserted a balloon in that hole to keep it open and allow for some mixing of the oxygen-rich and oxygen-poor blood. The surgery lasted about ninety minutes and improved Avery’s oxygen saturation to 85%. Overnight, she recovers well, is stabilized and then prepped for transport.

Winging it to Edmonton…

I had been up most of the night (walking the halls…oh the joy of a c-section!) but finally, in the hour before she left, I got to talk to her, hold her hand for the first time and generally confer with all the NICU doctors and nurses on her condition, transport and stabilization once she was brought to Edmonton. And then off she went with a resignation on my part and an amped up desire to get out of the hospital and make the three hour drive to be at her bedside.

Due to our vast geography and relatively small population, health specialities are regionalized (in an effort to centralize expertise and control expenditures). As such all cardiac pediatric cases are dealt with in Edmonton at the Stollery Children’s Hospital. As such, you could see patients in the NICU from as far east as northeast Ontario, as far west as the interior of BC and also from most parts of the Yukon, Nunavut and Northwest Territories. So on the morning immediately after Avery’s birth and first surgery, she was prepped for transport. Now I knew about STARS, but I did not know about the jets they use to do inter-hospital transfers! There were four to six attendants with Avery to monitor all her machines and ensure her respiratory system would handle the changes in pressure as a result of the flight. They just amazed me with their knowledge and reassurance.

Getting to Edmonton:

Avery made it to the hospital in Edmonton and was successfully re-assessed and stabilized. Since her oxygen levels were good (~85%), they were able to give her a bath and hold off on immediate surgery. This turns out to be quite beneficial for me since I pop a staple and my c-section scar refuses to stop bleeding. Given the short-staffing of the holidays, and my two older kids being saddled with the flu, it wasn’t until December 27th that we were able to make it to her bedside.

Talking to the doctors:

In the world of CHDs, Avery had a rather straightforward and repairable defect (TGA). Her surgeon tells me that he has a 98% success rate (the 2% of children who did not survive had other complications besides the CHD). He is quite confident (almost blase given the number of these procedures he had performed) and it rubbed off on me as I remained relatively nonplussed by what is about to happen. (Note: Here is where I may caution you as to the message boards on the Internet [see links below]. The Internet is an invaluable tool in educating yourself on your child’s diagnosis. However, personalizing the experience on message boards can be tricky as misinformation and traumatizing stories abound. I was almost “lucky” to not find the message boards until after Avery had her surgery as I am sure my faith in the hospital, doctor and procedure would have been shaken and left me quite unnerved.)

He does warn me that given the holidays, as well as the number of babies brought into the NICU over the past week, that Avery would not be priority one in getting her surgery. Nonetheless, he promised me that she would get the repair within the two-week period he outlined as ideal.

Bumped and “your baby is very sick”:

As a forewarning to any parent stuck in the NICU, here are two things to remember a) nothing goes according to plan and b) the days drag when you are sitting next to a layette with a sedated baby.

Avery was scheduled for surgery on December 30th. She was bumped due to a baby who required a heart transplant (quite a few parents who had babies with hypoplastic left heart were opting for a heart transplant versus the three complicated surgeries typically performed). Since she was going to be delayed, the doctors elected to extubate her (remove her breathing tubes). Since Avery was no longer sedated, she began to flail wildly and pull out the rest of her tubes (she was a feisty baby). Learning that she was not about to be undaunted, it wasn’t long before Avery was again sedated and intubated. These procedures are not at all fun to watch so they typically will tell you to leave when they need to do it.

She was then scheduled again for her repair on January 5th. As one of the requirements of the surgery, she needed an IV in the groin. It was late on the evening of the 4th so we went to dinner. We came back and all hell had broken loose with Avery. She was as white as a sheet with splotchy, spiderweb-like markings all over her body. All her other vitals seemed to be OK (save her blood sugar which was super high). Her layette was crowded by three nurses, the NICU doctor on call, a radiologist (taking another echocardiogram), an infection specialist, etc. They didn’t know what was wrong with her but only told me “your baby is very sick”. At the time, I didn’t appreciate what this coded language meant…it was only later that I realized it meant “your baby could die”.

I was never really freaked out before but this scared me. I kept thinking that had she already had the surgery, we wouldn’t be going through this. It has only been a week and a half but I felt like I had lived a lifetime in that period.

As the hours progressed, her condition seemed to better (especially since she was pumped full of antibiotics immediately). It was later determined that she had become septic as a result of the IV insertion and some pre-existing bacteria in her system. Needless to say, she was bumped again from having her surgery.

After recovering from sepsis, Avery was scheduled to have surgery on January 7th. Once again, she was bumped due to a child who had complications with his/her artificial heart. It was now getting close to that two-week date (i.e., the optimal window for her CHD repair) and I was as anxious as I had ever been in seeing that Avery get her surgery (I did not want her to get sick again!). She was rescheduled for the 8th when she would finally receive her life-saving procedure.

Open heart surgery:

On January 8th, exactly two weeks after birth, the surgeon at Edmonton’s Stollery Hospital, performed an arterial switch (also know as the Jantene) on Avery. In this procedure they switch the pulmonary artery and aorta back to their intended positions on the heart. The trickier part of the procedure was switching the cardiac arteries from one side to the other (since they each perform different functions for each side of the heart) since they are only the size of fishing line. Avery was cooled and put on bypass for this procedure (which would play a part in a later post-surgical diagnosis) but she nonetheless sailed through the surgery with no complications. Moreover, they were able to close her chest immediately (in smaller babies, they do not stitch up the baby until the next day in order to allow the swelling to subside), remove her pacemaker leads within eight hours and get rid of the chest tube the next day. The nurses told me she had the fastest recovery of any baby up to that date with the same repair (what a relief!).

Coming back to Calgary:

A mere four days after her surgery, Avery was off of all her heart medications and jetted back to the Alberta Children’s Hospital to a) get off the morphine (she was addicted!) and b) learn to drink from a bottle (I did not know that babies lose their suckling reflex if they do not use it within the first few days of birth). It would take a long two weeks for her to gain enough weight to be released and I am sure the nurses where happy to see us go since Avery was only happy “in arms” (thank goodness for all the volunteers at ACH!).

(Note: Cardiac babies can be real sleepy and not take in enough nourishment so it is a real challenge to get them “on the program”. They could have sent Avery home with a gavage tube but I really didn’t want to have to deal with that so I was grateful when she slowly but surely figured it out.)

Note: If you are a CHD parent, I have found the following resources to be quite useful:

Coming home:

Avery was brought home on January 25th, exactly one month after her birth. I would have to pump her milk and fortify it with formula but save that there were no special directives required for her care. She grew slowly but surely with regular appointments at the family doctor and clinic (for vaccinations and weight checks), but we would have no other interventions until she was six months old.

Our second home:

As part of the post-operative care of Avery, she visited the cardiac clinic for a follow-up appointment at the age of six months. She had a murmur still (since the hole created by the balloon septostomy had not closed) as well as mild pulmonary stenosis. Save annual checkups (where they would check to ensure that her arteries were growing with her), they told me she was doing very well and that no additional therapies/medications would be necessary.

In addition to her typical care, the Alberta Children's Hospital's Perinatal Follow-Up Clinic manages care for children who are premature and/or those who experience invasive therapies. In this clinic, the child is followed by an assigned pediatrician and several nurses. This group will regularly check the child until 18 months of age and then do an additional review at the age of 4 1/2. Should they perceive any development issues with a child, they can refer to other clinics throughout the hospital.

While lucking out in her cardiac post-operative diagnosis, we spent a great deal of time in the perinatal clinic dealing with various minor issues. She worked with an occupational therapist to aid in eating (pinching and grabbing). She had hearing tests due to her relative lack of responsiveness (even to me) at the age of six and twelve months (she passed). As we plugged on, it was becoming apparent that Avery was not hitting her marks when it came to gross motor movement. She did not sit until the age of sixteen months and did not walk until twenty-two months so she was assigned to a physiotherapist. In addition, she was assigned to a speech therapist since she was testing at the age of a nine month old for expression and reception. In the end, this confluence of factors would end up with a diagnosis.

On her eighteen month follow-up, Avery was given a diagnosis of cerebral palsy (mild and only on her right side). Believing it to be due to an oxygen depletion which caused her brain injury, the pediatrician concluded that it was probably due to the time spent on the bypass machine during her open heart surgery. We have yet to make it to the neurology clinic (we have been on the wait list for eight months at this point since Avery's condition is mild) so the causes are still (and may forever be) undetermined. Wait lists seem to be the norm for the more specialized clinics of neurology and opthamology (Avery's right eye tends to wander which requires a visit).

Presently:

Avery is now two. Her heart condition steadily improves even if she is still a little smaller than they would like. To keep up with her therapies, she will be going to special needs preschool in the fall (where she will have to go five afternoons a week!). She still doesn't sleep through the night (didn't figure out any self-soothing strategies as a baby thanks to her time in the hospital and an overindulgent mama!) but save that, she is a real trooper with a smile always on her face!

Note: Alberta Learning provides funding for early intervention from ages three to six (if you need more information, click here). The funding is particularly driven by speech delays so if you think you might have a child that would benefit, get them assessed by a speech language pathologist...better now than when they get into elementary school when there is no longer the resources available!

What Cranky Looks Like

2011-02-09T07:21:00.000-08:00

Ave has a cold and was up most of the night. This morning she is overtired and fighting a nap. Tried to capture the bags under her eyes and this was her response.

Dancing Queen!

2011-01-26T16:24:00.000-08:00

This is For Sue!

2011-01-14T12:32:00.000-08:00

Sue made this pretty hat! Ave wears it frequently (because she loves being told how pretty she is!) but will she let me get a half-decent picture? Oh no!

Ave's Got an Addiction...

2011-01-11T22:58:00.000-08:00

...she is in the pantry all the time getting out granola bars (she is quite proud of herself since she can open the door and get them out whenever she likes!). She has even got the words "granola bars" and "open" down pretty pat. Tonight she decided to get four out and walk around with them while I told her no. I think we have limited her to no more than two per day but who knows...maybe she's hiding them from us!

Avery Practices Talking

2011-01-06T15:23:00.000-08:00

Who needs a chair...

2011-01-05T17:49:00.000-08:00

...when there is a box?

Avery Enjoying Her New Trampoline

2010-12-28T17:01:00.000-08:00

Avery's Haircut

2010-12-20T17:00:00.000-08:00

My littlest girlie got her hair cut tonight. A bit of a challenge but, like her brother, she is best mollified with books. Afterwards, she got to go in the ball pit. She is happy in this pic but she melted down once I took her out! Thank gawd for suckers!

Avery's Last Play Class

2010-12-19T19:58:00.000-08:00

Avery had her last play class on Tuesday (unless I register her again in the new year)...she enjoyed it so!

Playing tic-tac-toe. She just wanted to read the letters
on the mat more than play the game itself!

She looks to dump out the whole container of
balls but this is too big a pail!

Loves the drum!

Here she is with Jing (our new nanny) on the parachute!

Avery's Brace

2010-11-27T20:09:00.000-08:00

For those of you who haven't seen it, here's Ave's brace. She's got her squeaker shoes on after Grandma Fillo got the strap lengthened...lots of squeaks now!

Avery 's Had Her Brace for One Week!

2010-11-25T12:56:00.000-08:00

Today we had physio and the therapist was so impressed with her gains in one week. Her stance is much closer together (no more cowboy walk...well, less of one anyway,) and she is better at running, dancing and jumping. We have to work on her posture so that she is more upright (she felt more confident stooping over before the brace). In addition, we have to work on her pivots in her hips and combining moves (e.g. crouching with her hands over her head).

Next time, we are going to check her AFO (AKA her brace) to ensure she doesn't need a lift in her other shoe and get some further exercises so that she can progress at a quicker pace. In addition, we are going to start working on loosening up Avery's right shoulder (it is quite tight when putting a jacket on) and looking into occupational therapy for help with fine motor control and aides to stop all the drooling!

Lastly, we hit the orthotist so he could check on the brace itself. That was fine (save the fact that we need to check to make sure her heel is planted firmly)...he just kept commenting on what a changed girl she was this week (since last week she absolutely lost it! Even the receptionist commented on her meltdown from the week before!).

One last note...Avery needs to her work on her focus and distractability. We need her to focus on one task for at least five minutes at a time (throwing a ball, doing a puzzle, etc.) to slow her down so her movements are more in rhythm with the rest of the body. Slowing down may also aid in her cognition and visual cues (esp. given her right wandering eye. Gotta call that opthamologist!).

Avery Sings Mdrawp!

2010-11-16T21:02:00.001-08:00

Avery's Current Addiction

2010-11-02T11:43:00.000-07:00

Avery loves books. This Duck and Goose one is a particular fav. Today, she brought it all the way downstairs with her and then threw it at me to read. I now have a bump on my forehead...it must be dang good reading!

Ideas for the Girl's Birthday/Christmas

2010-11-01T11:32:00.000-07:00

Crazy chick with the Christmas birthday...tut tut. When I think back to that Christmas Eve when the contractions started...ugh! Anyway, just posting some ideas here since it's easier for me and any of the relatives to be on top of her current faves.

Handy Manny

Fisher-Price Manny's Fix - It Phone
Disney 5-Pc. Handy Manny Bath Toy Play Set

Mickey or Minnie Mouse

Fisher-Price Mickey's Surprise Clubhouse
Fisher Price Mickey's Magic Choo Choo

Elmo or Cookie Monster

Fisher Price Elmo's Super Boom Box
Fisher-Price Sing and Giggle Microphone

Other

Vtech - Baby's Learning Laptop
Little Tikes Easy Score Bean Bag Toss
Fisher-Price Laugh & Learn Learning Piggy Bank

Finally Snapped Some Pictures...

2010-10-26T13:46:00.000-07:00

...of Avery's play class (every Tuesday for 45 minutes). They have organized songs, free play and then reading time...she loves it! Here she is playing with the musical instruments and attempting to pop bubbles!

Timbits Soothes the Savage Beast!

2010-10-26T13:32:00.000-07:00

Avery was such a grump yesterday. Since we had to wait outside the school to pick up C, I got her some Timbits which cheered her up some!

Mommy Tries to Get Avery...

2010-10-20T11:15:00.000-07:00

...to clean up her mess! She dumped all of Mommy's primas on the floor and seems more than content to wear the container as a mask. What a goofball!

Tale of a Marker by Avery...

2010-10-18T08:27:00.000-07:00

I found a marker while Mommy was on the phone with Grandma Fillo. I colored on the table a bit, pretended it was lipstick and then proceeded to chomp the end of it off. I then crawled on top of the table so I could embed the marker tip into my knee and drag some of the color around the living room. Did I mention it was fuschia?

Avery's Speech/Physio Appointment

2010-10-12T11:21:00.000-07:00

Avery had a joint speech/physio appointment today. She did virtually no talking as she was too fixated on walking and playing with the toys.

I met with her new physiotherapist today. She showed us some new stretches and assessed Avery's gait now that she's up and about. She has given us a prescription to have a brace made for her right foot (which will reach up to her knee - it will most likely look like that in the picture). This brace will not be fixed but will instead have a joint to allow her to bend her knee. Most importantly though, it will get her body used to holding her foot flat and straight (rather than shifting inward with pronated toes). Her brace is made by a separate private clinic. Even with the province covering 75%, it will still be a minimum of $500 out of pocket (these things are crazy expensive). She will have to go for some fittings to ensure a proper fit. I was not told how long she would be in it but I assume, since we will have to start going every two weeks or so, the physiotherapist will be able to give us the okay when Ave has progressed sufficiently.

P.S. As soon as we left the hospital, Ave was a chatterbox! Figures...

Avery Walking!

2010-10-02T20:19:00.000-07:00

Cool Girl!

2010-09-29T22:22:00.000-07:00

Ave loves trying on the rest of the family's shoes, hair accessories, hats, etc. Today she found T's glasses...what a ham!

Avery's Words

2010-09-23T12:10:00.001-07:00

I am gonna post Ave's speech development here and update as we go...

Words in the last two weeks: "mdra" = raindrop, mom, dad, hi, bye-bye.

Yesterday at speech therapy:

meow and ball

Today:

kiss noise and the word "hug"

Big Steps and Little Steps

2010-09-14T17:07:00.000-07:00

This afternoon I got Avery's psychological assessment from the Perinatal Clinic at the hospital. Routinely given at the 21 month mark, the test evaluates cognitive, language and motor skill development. In addition, it offers some insight as to adaptability and temperament.

On cognitive, she scored in the 9th percentile. Essentially operating at a 15 month old level.
On language, she scored less that the 1st percentile. Operating at a 12 month old level for expression and a nine month old for reception.
On motor, she scored less that the 1st percentile. For fine motor skills, she is operating as a 13 month old would, for gross motor skills, she operates as an 11 month old would.
For her social and emotional development, she is considered average with a score at the 25th percentile.
For her adaptive score (i.e., her ability to be independent, solve problems and self-help), she scored in the 5th percentile. Sleeping, of course, proves the biggest hurdle and her stubbornness makes it challenging to teach her new concepts when she is unwilling to tackle them.

Hooray!

2010-09-14T10:55:00.000-07:00

Avery just walked the width of the living room all by herself!

Reminder: Weight: 10.98 kg (5th percentile), Height: 81 cm (10th percentile) and Head Circumference: 46.5 cm (15th percentile).

Ave Makes Sense Outside the Family!

2010-09-11T19:37:00.000-07:00

Avery says stuff amongst us four that we understand since we know the context of what she speaks (e.g., "mdra" is raindrop). Today, however, she clearly said buh-bye repeatedly when we were leaving G and G's house! When we came home, and before bedtime, I made her watch baby phonics videos since we have work to do!

Ave's 21 Month Perinatal Clinic Visit

2010-09-10T18:57:00.000-07:00

We had one of those long three hour appointments at the hospital today...here's the results:

Had a psychological test for an hour to check on Ave's language and motor delays. They are quite happy with how agile she is and kept remarking how "determined and strong-willed" she was (esp. since she did not allow them to check her ears, eyes, heart or blood pressure...yeesh!). They like how she worked with tools and by her inquisitive nature in figuring out how things work.

Her language is quite delayed given that she does not articulate much of the basics at all. While she will sing along with her favorite songs, much of it is still at the "scream along in fun stage" rather that speaking the actual words. Finally, she is not cluing in to the concepts as they are being explained to her as most kids her age would (e.g., when asked to "point to your arm" or "look at the light", she does not respond).
Her hearing test was fine (we had another session in the soundproof booth) however she did not let the pathologist look at her ear drums. Probably a good idea since I am sure they were dirty given her recent fondness for sticking her fingers in her ears (esp. at dinnertime!).
The pediatrician did not have much luck in actually getting any of her vitals, reflexes or visual/auditory feedback (Ave was not having any of it and was esp. tired at this point). Given our discussions, she wants Ave to be checked out by an opthamologist (since when she is tired, her right eye tends to wander) and the stroke clinic.

In going to the stroke clinic, much of it would largely be informational (since they don't do much more than research). However, they could recommend an MRI to get the full extant of any brain damage and offer advice to her speech, occupation and physical therapists on areas that they should pay particular attention to.

She was so tired after all of this (esp. since we had bought her walker and she ran all over that joint) that she snored like a trucker on the way home. And her thrush is clearing up which is making her much happier than she was last weekend! Now we all have to just catch up on our sleep...hmm...

Ave Enjoys the Swings

2010-09-05T20:22:00.000-07:00

Sleepy Ave

2010-09-05T15:44:00.000-07:00

More Practicing

2010-07-31T20:32:00.000-07:00

Here's Avery in nothing but a diaper and pink high-tops!

Walking With Some Help...

2010-07-15T20:25:00.000-07:00

Ave has been doing really well pushing around her "shopping cart" (that's what we call it). She can do a lap of the house and is even managing to avoid hitting the walls all the time!

Ave's Making the Big Leagues!

2010-07-11T20:43:00.000-07:00

Got about eight calls this week from the Perinatal and Infant Services clinics up at the Children's Hospital. Each time it was a new person I was talking to (which meant giving them the whole lowdown on Ave's history and current development) but, on a good note, I did finally get Ave into speech therapy and advanced physio starting at the end of this month. It always seems whenever I am talking to them, Ave always figures out something (as if to make a liar out of me). This afternoon she stood alone for the length of the ABC song. After that, she wouldn't wait that long but instead would take a couple steps forward until she could wrestle herself into my arms. All good signs of improvement!

Ave's First Haircut

2010-06-23T16:40:00.000-07:00

Ave's first haircut (June 21) and boy, did she need it! She looks a little boyish but super cute!

Ave's Destruction of Choice...

2010-06-21T09:18:00.001-07:00

Ave likes to play "Baby Godzilla" all over this house. I think her fav thing to do is get in Mommy's tea/Splenda stash. I just clean it up everyday since a) I have gotten soft in my old age and b) she just seems to enjoy it so much!

A Milestone!

2010-06-16T16:42:00.000-07:00

Ave was playing in the plastics drawer and forgot herself for a minute...she stood up without assistance for a couple seconds and beared her weight on both legs! Yay!

Avery and Her Hippos

2010-06-08T09:20:00.000-07:00

Avery loves the hippo commercials from Telus...here's her fav:

We took some pics of the hippo at the zoo just for her (and what luck since he was out of the water that day!).

Avery's Milestones This Week

2010-05-20T09:24:00.000-07:00

Avery learned how to wave (and on command!).
She enjoyed the swings at the local park. Short pushes but she giggled all the time.
Loves bubbles blown at her in the water during swim class. Always says "Dah" in her loudest voice so you will do it again.
Drove mama over the bend by waking up every half-hour (this ain't new...just making a re-appearance!).

Where You Going?

2010-05-18T09:46:00.000-07:00

"Upstairs."

(Forever going up and down the stairs! And with some of the craziest hair ever!)

Ave's Cardiology Appointment

2010-05-12T18:27:00.000-07:00

Ave's trip to the cardiologist went well (mild pulmonary stenosis and a murmur - none of which was news). She doesn't have to go back until next year.

The worst part was spending the two hours wrestling her down for the EKG and echocardiogram and making sure she didn't trash the joint since she insisted on investigating every square inch of the clinic!

She weighs 22 lbs. now and is in desperate need of a haircut!

Tomorrow she has physio so its back to the hospital we go!

Avery Blogs!

2010-05-06T17:31:00.000-07:00

gf z5 z zz za z1zecezcwwbbrsrrsqr nzzzzz Z zz z 4erf zz zz z azz zzzx c

I let Avery practice typing on the laptop and here above is her first blog. I imagine she has a lot to say here. Maybe she's tired and that's why she kept heading for the "z's".

Avery's First Swimming Lessons

2010-05-01T16:46:00.000-07:00

This girly was tired and chilly after her lessons but she is always a delight!

Avery Crawls Up the Stairs

2010-04-27T08:51:00.000-07:00

Yesterday, T and I spent some time with Ave as she worked on going up the stairs. She got up six of them and then slowly backed down. Then T went off to play and I needed to get dinner started. Ave headed off to the front room to play with toys. About five minutes later, I hear her bellowing (but that's normal...she's excessively chatty sometimes). I went to look for her...she wasn't in the front room or the bathroom (toilet fishing typically). The only place she could be was upstairs...and yep, she did it. She climbed all the way up, unattended, and was standing up holding on to Charlotte's bed grinning away. She was so proud of herself. I said "How did you get up here?". She just laughed, hit the edge of the bed with her hand and then started to bellow again. I then took her downstairs so I could at least finish dinner without her finding any new adventures!

Avery Gets Her First Letter

2010-04-23T20:45:00.000-07:00

Auntie Jan sent Avery her first letter. She sits at the open front door duly concentrating on opening it.

The more she concentrates, the more she drools!

She got a piece off so where does it go? Yep, right in the mouth!

Words!

2010-04-12T09:05:00.000-07:00

We are pretty convinced that Ave now says "up" and "yes". She has been saying "mama" and "dada" but doesn't associate them all the time with Brad and I. However, now that she is crawling and can pull herself to her knees and feet, she wants "up" all the time!

We Have a Sitter!

2010-03-25T20:22:00.000-07:00

This pic isn't great but I wanted to capture it and I only had my phone! I will tell you that for the last week, Avery has been successfully sitting most of the time (of course, she doesn't sit for long since she is always on the go!).

Me and Momma

2010-03-20T18:58:00.001-07:00

Upper motor neuron lesion (hemiplegia)

2010-03-16T06:34:00.000-07:00

Things to watch for with Avery:

Problems with gait. Overactive use of hip to compensate for stiff knees.
Difficulties with complex hand use from buttons to tying shoes to holding a pencil.
Challenges with turns and pivots.
Might have an issue with activities that require her arms to be over her head (such as catching a ball or putting a shirt on).
Will likely be unstable when it comes to toilet training. Expect that she will be in diapers for some time.

Milestone today: Sat up in the tub for most of her bath. She was interested in sucking on a wash cloth or holding on to Nemo (her fish) so she seemed focused on her play rather than her balance. She surprised me when I caught her that way since I had been harping on Charlotte to get dressed so we could pick up T! (Forever naked...that's C!)

Something for further research: Constraint Induced Therapy

Cute Story...

2010-03-15T15:18:00.000-07:00

Avery went into the classroom as Charlotte did on Friday (which she tends to do every chance she gets!). While I talk to Ms. Garneau, she throws herself to the floor and crawls over to the mat where the rest of the four year olds assemble as they wait for class to start. There are books all over the mat for the kids to read so Avery takes one, and then lays on her back to read it (which is how she lives around here most of the time...there are always books all over the floor!). Anyway, she had her hair up in a couple of ponytails right off the top of her head (think Pebbles from the Flintstones). Since it was "Crazy Hair Day" at C's preschool, all the girls thought that Ave was playing along. I had to tell them that sadly, given that her hair grows in every direction, every day is "Crazy Hair Day" for Avery.

Ray of Sunshine!

2010-03-13T23:21:00.000-08:00

Just hanging...

2010-03-12T11:55:00.000-08:00

Mommy has to keep me entertained anyway she can...here I play with a bucket filled with items from the plastic drawer (and C took these pics!)...

Proof that Avery Sat on Her Own!

2010-03-09T20:21:00.000-08:00

Candice caught this pic on her phone...I have still not seen Avery sit on her own like this!

Getting Bigger All the Time!

2010-03-04T20:31:00.000-08:00

Here is our big girl in her seat. She chatters a mile a minute in the car now since she can see so much more of her world. In some cases, she will scream to be heard over her brother and sister! Ha!

In this, her fourteenth month, she delights in playing piano, blocks and SmackTalk. She is eating well, sleeps through (most times) save the midnight milk and is cruising at a clip whenever she sees something she wants. We have physio next Thursday (to work on sitting, standing and eventually walking). Candice (the nanny) snapped a picture of her sitting on her own (watching show) so she did do it once! Now we just have to have Charlotte Diamond on continuous loop for her to do it again...hee hee! Her things to annoy Mommy include (which makes her giggle): smacking Mommy, sucking on the strings of her Mommy's shirts, pulling the plug out of the tub, purposely throwing her meal on the floor (while she looks at you as if she's testing your reaction) or dumping out the cat's food on the floor (but at least she has stopped eating it!).

This gal...

2010-02-23T20:37:00.000-08:00

...thought it was super fun to continue pulling her big sister's hair tonight. She has been a little more lethal lately with a mix of fingernails, slapping and general screaminess. But, as you can tell, she is quite amused by it all.

My First Coloring!

2010-02-22T11:15:00.000-08:00

Trying Out My Big Girl Car Seat!

2010-02-15T23:16:00.000-08:00

Charlotte Played With the Camera...

2010-02-15T20:30:00.000-08:00

...and caught two pictures that are highly emblematic of Ave's everyday life. One is of nutty Charlotte Diamond (her fav right now...she loves music) and the other is Avery transfixed in her chair (and looking a little rough from her current cold).

Mommy and Me

2010-02-13T14:46:00.000-08:00

Avery Gets Ready for Bikini Season

2010-02-13T13:36:00.000-08:00

A Little Frustrated Lately

2010-02-13T10:19:00.000-08:00

It's been a little challenging being me this last week. I have had a cold for a long time. My nose runs, I am congested and my throat hurts sometimes. I am constipated too and that's no fun.

I am overtired since I keep needing to wake up for a drink or to get the coughs out at night. And while I am having a longer nap during the day, I have cut my naps down to just that one.

And I am not willing to put much weight on my legs at all. Whenever Mommy tries to practice with me, I immediately start crying. We need to practice some more exercises!

Finally, I am really screamy lately... but it's fun to beat up my brother and sister when they let me. One place to always get me to smile? The tub...yep, so that's where I am heading!

Getting My Sit On!

2010-02-03T09:33:00.000-08:00

Here I am practicing on my IKEA stool. I can sit for about 15 minutes all by myself like this without falling over! Ignore that hammy girl in the one picture...she's always trying to steal my thunder!

Avery at the Clinic...

2010-01-26T20:42:00.000-08:00

Another day, another appointment! Since her visit to the perinatal clinic last week, Ave gain 10 oz...she is now 20 lbs, 2 oz. (time for a big girl seat facing forward...yay!). She is 29.5". She weathered her three needles okay. We would have been out pretty fast had I not met with another new nurse which meant a half-hour talk to cover her history. Now I am trying to find some apparatuses (apparati? ha!) so she can practice climbing where she puts weight on her hips and calves (such as a small set of stairs?). She seems to be growing a little bored with things so I got to switch it up...we need a baby obstacle course, methinks...

Party Photos

2010-01-23T22:04:00.000-08:00

Update on Avery

2010-01-21T18:46:00.000-08:00

Brad and I took the girl up to the perinatal clinic for another routine follow-up. She only had an appointment to see the occupational therapist (we had originally gone there for eating issues since a] she had to gain weight, b] she had to relearn how to suck and c] she had so many problems with the formula). Anyway, the OT thinks Ave is doing just fine and she shouldn't need to see her anymore from here on out.

When the OT left, we met with the physiotherapist. While Avery has improved greatly with her gross motor skills over Christmas (crawling like a madwoman esp. when she thinks she can get somewhere/something that is off limits!), her right-side muscle tone is still not where it should be. She has a tight hamstring, calf and foot (which causes some issues with coordination). In addition, her right hand is still not as precise as it should be (she still palms items sometimes and favours her left hand most often). The physiotherapist gave us lots of ideas on how to work with her that I can going to ask Candice (our nanny) to incorporate into their playtime.

We were able to watch Avery sit with the physiotherapist and grab objects with her right hand. Since she felt secure under her guidance, she was able to focus on the foods and forget about losing her balance. (The physiotherapist thinks that Avery tenses up when she tries to sit [which is why she also arches her back] which only reinforces her lack of balance. As such, she does what feels best which is just lie on the floor.)

We are going to go back in a couple of months to see how she has improved and then get more tips on the next stages of her development.

ETA: 19.5 lbs. on this check.

Avery likes "Apples and Bananas"

2010-01-21T18:01:00.000-08:00

Avery's idea of dancing is simply smiling and moving her right arm.