Feb 27 2009

Shunt Surgery; Say A Prayer for Lena

Shunt Surgery - Say A Prayer for Lena

It is February 27, and Lena is in surgery as I type this. Last time Lena had shunt surgery, she was just a little baby and took it all in stride pretty well. She’d been through so many surgeries that she’d become a little trooper at the process.

It’s been over a year since she needed shunt surgery, and today she was one terrified little girl. She had to be intubated before the surgery, and didn’t understand why she couldn’t talk or call out to her Mommy or even cry. Just big alligator tears with no sound to go with them and that horrible scary thing in her throat.

The doctors are going to put in an external shunt, and then she’ll have to stay in the hospital for 4 days to be sure there is no infection. If her tests are clear of infection in 4 days, she will go back into surgery to have a new shunt inserted. If there is infection, she’ll have to stay in longer. Either way, there’s another surgery before she can go back home.

Kassie is at home with her Nana and Poppa. Daddy will be coming home for the night, but she’s one confused little girl because her mommy and sister left and didn’t come home all day, not even for bedtime.

If you could say a little prayer or think good thoughts for Lena, Kassie and their Mommy, it would be very appreciated. Right now, they would appreciate all the sunshine, hugs or prayers you can send them.

P.S. I’ll update when I hear back from Korrina post surgery.

19 responses so far

Jan 09 2009

Random Holiday Pictures

Published by under Daily,Family

All those gifts and what does she want?kassie_xmaspaper

Lena ripped the paper!!!lena_xmaspaper

Glamour Girl!kassie_ribbons

Sitting with her singin puppy! lenapuppie

I was trying to get a picture of her playing with the ornaments but she saw me. (Yes, we do put 2 socks on her in the morning)kassie_scootin

Baking cookies with Aunty Leah!lena_cookies

Hugs for Papa! kassie_papa

Lena the sitting machine. Yes, she will be an independant sitter Shelley (our PT) says. Yeah Lena! lena_sitting

4 responses so far

Jan 03 2009

Finger Painting

Published by under Uncategorized

These were taken this summer. The tables the girls are at are adaptive tables  and chairs that were designed for them by our OT Laura (who just had a baby boy congrats!) and our PT Shelley. We use them a lot.

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2 responses so far

Jan 02 2009

It’s Terrific Being Two

Published by under Cerebral Palsy,Daily,Parenting

WOW! I can hardly believe that they are two years old already. It is really interesting how time flies, yet in some circumstances it seems to stand still. When we were in the NICU I could not wait for the days to go by the time just seemed to drag on and on. Now I wish I could find a way to slow down the clock, they are growing so so so fast. Every day I look at them and I can not believe how big they are. It is truly sad that my memories of our time in the NICU and this time last year when Lena was so sick are so crisp and vivid, right down to the colors in the room, the noise, the sounds even the nurses faces. Yet, the memories of the good times, the best times are so fleeting. I wish that I could some how reverse this scenario and bottle up these wonderful times, categorize them by age, so that I can bring them out when I need them and take in all in again. But I can not.

This is why I keep this blog so that I can go back to the good times and the bad times, year after year and remember. I guess that means I need to be more diligent in my blogging too. Ahh the constant battle to balance the many aspects of our very busy lives. I can not believe that over a  year has gone by.

The girls are changing and growing at an alarming rate. At our last weigh in Lena was 77cm or 30.3 inches tall and weighed 9.32kg or 20lbs 8 oz and Kassie was 81cm or 31.9 inches tall and weighed 10.5kg or 23lbs 3oz.  Both girls have really developed very unique little (big) toddler personalities.

Lena is quiet, reserved and generally more passive than Kassie. Lena loves to laugh and smile, she is ALWAYS happy. When she is not happy she is either VERY tired or we know something is wrong.  She loves to be tickled and giggles and giggles and giggles. Her laugh is infectious and heart warming, she makes everyone smile. Physically Lena is making leaps and bounds. She has really taken off in the past 6 months or so. She is developing better fine motor control and likes to target and grab anything. She wants to feed herself and is getting better at getting the spoon to her mouth (after hitting her hair, eyes, cheeks etc.) She has also started to eat cracker type foods and cheerios. Yeah Lena!

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Like her sister, Lenais developing a mischievous side, hers is more sneaky than Kassie’s though.  She loves to grab things off the kitchen counter next to her high chair when I am not looking. She is really coming along in her gross motor deveolpment too, making some serious progress sitting. She can now sit unassisted for several minutes (2+). Her success really depends on the tone in her hamstrings though. If it is too high she has trouble maintaining the position. She has also learned that there is always something to lean back on so she often leans backward so we are trying to teach her to lean forward when sitting, she is starting to figure it out. When she forgets it’s game over.

Lena is going to be the singer in our family, though she is the quieter of the two, letting her sister babble on and on and on, when Lena is alone with us or Kassie has a moment of silence, she loves to sing her little heart out always with a humungous smile. Our one huge hurdle is having trouble gaining weight, the gap that once was very small between the two girls is widening every time we go for a weigh in. Funny thing is, Lena eats fairly well most of the time and Kassie, who is having no problems in the growth department is a picky toddler who eats sporadically.  Go figure.

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Though when Lena eats she eats relatively well, we are still having trouble getting past the pureed foods and I count calories for her daily because she just can not gain weight lately. There are never enough calories and with our diet obsessed world it is getting harder and harder to find nutritious, high calorie foods. I used to think her feeding troubles revolved around a swallowing issue but after two feeding clinics and a swallow study that has been ruled out. For awhile we were all puzzled. She can chew, she takes bits of crackers and graham cookies but she won’t eat anything else solid and I can not put anything into her mouth, if I do get it in it comes right back out. So after many tears, much frustration and thoughts of a g-tube (when eating is good it is good when it is bad, it is really bad). I have come to the conclusion that most of Lena’s feeding issues are sensory. She has major facial texture issues and is very particular about what is put in her mouth (she can put almost anything in there but we can not. Fluid intake has also become a worry. She refuses a bottle if she is upright, she will only use a bottle laying down with her head raised. She will take small sips out of a plastic juice box but it is not enough. Consequently she also has poop issues. The life of a micro-preemie is NEVER dull, but it’s worth every minute.

Kassie is definitely not quiet, she loves to be heard and makes sure that she is the center of attention at all times. Lena is not allowed to have any attention, Kassie gets very upset and jealous, great fun. She “talks” constantly, though she still speaks in her own language that we have dubbed “Kassie-ese” . Her language is full of bugahhs and beedahs and ohhbadahs. Oh and when she really wants attention… mom-mom. She may not talk but she understands everything and is very emotional. If she knows you are upset she gets upset.

Kassie is going to be in the spot light when she grows up. She is such a ham. She loved to play dress up with Lorraine, our ECIP worker, when she brought over some pretty princess clothes, necklaces and funny noses. She thought it was great to see herself all pretty in the mirror. We had to buy her some pretties and a crown. When the camera comes out she is right there. When the camcorder comes out, she stops whatever it was that was cute she was doing to make sure you are taping her. Too funny. On a daily basis she has to have attention at all times or she gets quite upset. She is very social and needs to be around people at all times, if you leave the room, look out, its tantrum time. As first it was cute, now … not so much.

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Kassie also has quite a unique sense of humor and a one of a kind personality, she could be a comedian. She catches on to jokes very quickly and loves to be funny and make people laugh. She thinks it’s hilarious when someone says OUCH!, she loves to pull off socks, hers, yours whatever. Kassie loves to play peek a boo, in fact it is a sure fire way to distract her when she gets upset.  She has a huge infectious smile with an adorable deep dimple on the left side (one comes out on the right too if the smile is large enough) when she knows she has been funny or when she has done something good. Its all about the praise these days.

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Physically Kassie has been amazing in the last few months. She has taken off like crazy. She is now a bum scooter and travels all over the house sliding aroundon her bottom. Kassie still refuses to stand on her feet and bear and weight through them in an upright position. She used to not put weight through them at all though, but since the bum scooting she has had to learn to push with her feet which forces her to apply pressure. She also uses the right side of her body more spontaneously now (more the foot than the hand but progress is progress), as well as on demand.  Yeah Kassie!

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One response so far

Sep 05 2008

Bubble Bath Fun

Published by under Adventures,Daily

Who can resist two cute little girls in the tub?

The girls are both finally both stable enough that I can put them both in the tub rings so they can safely have baths together. Lena bears the brunt of Kassie’s incessant splashing but I think she likes it; she’s starting to get her back a little.  They are growing up too fast.

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4 responses so far

Sep 04 2008

We’re Going to be Famous

Published by under Adventures,Parenting

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Today we made a special trip to the Doctor’s office, for a photo shoot. Late last week our fabulous family doctor, Dr. Alanna Danilkewich,  called and asked if I would mind bringing the girls into the office to have thier picture taken for an advertisement.

Dr. Danilkewich works out of the Department of Family Medicine at the College of Medicine , University of Saskatchewan. They are recruiting new physicians to teach at the college. She thought of us when she was asked to have a young patient volunteer to be the “patient” in the advertisement. So there you have it … we are going to be famous.  I am not sure exactly were the photos will be used to advertise but the photographer said that the last time she took a photo like this the College used it “everywhere” . I guess we will see how it turns out. Regardless, we had fun.

On a side note, Dr. Danilkewich really warmed my heart today. When she introduced us to the photographer and the two residents that were with us, she raved about the girls like my parents do. She told everyone how they are miracles and have really beaten the odds, all the while beaming with pride.  

3 responses so far

Aug 24 2008

Peeper the Silkie Chicken

Published by under Country Life,Daily

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This summer Papa bought a buch of exotic chickens and other birds to come and live at our acerage. This little silkie chicken wasn’t big enough to live with the other chickens yet so he stayed inside with us for awhile. Silkie chickens are unique in several ways; they do not have normal feathers, theirs look like hair, they are also very docile chickens, they like to be handled and can make very good pets.

The girls really liked Peeper. However, after several attempts to intigrate him with the rest of the chickens (he escaped several times) we brought him back to the house seemingly healthy and he died while we were asleep, not sure why. He is now resting in our strawberry patch.

However, we will have to find more silkie chickens, the girls thought he was great. In fact it has come to our attention this summer that they love to be around all animals. Kassie gets very excited and vocal when she is around anything four legged, furry or feathered and Lena gives the biggest and best smiles to the animals. Both of the girls love to touch them. I am so gald they are not afraid, animals can be so therapeutic.

3 responses so far

Aug 23 2008

Sparkling Ears

Published by under Daily,Parenting

On Tuesday after hmmming and haaaaing about it for just about a year, we took the girls to get their ears pierced. They were troopers, cried a little more than I thought they would (Lena especially) but it had been a really long, hot day and no nap to speak of. So I am not sure if it was the trauma or the shear exhaustion that caused what tears there were (probably a combination).

Getting ready to get pretties in our ears:

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The piercer is great (she is the one that did my nose). I wouldn’t go to anyone else. She is a dental hygenist and is great about sterilization. After doing some reading I would never get pierced or let anyone close to me get pierced with a gun again. They are bad news.

Anyways the girls did great and they look extra adorable with thier big girl earrings though Papa is not happy with me, he thinks I should have waited (until they were old enough to be really scared and only let me do one).

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(the purple is a stain from the marker she used to mark the spot, it will wear off)

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They have grown, changed and excelled in so many ways this summer it is just amazing. They seem to impress us with something new or improved almost every day. I promise I will put together a full summary soon. I have so many summer pictures to share.

3 responses so far

Jul 26 2008

Fun in the Sun

Published by under Daily

A video of the girls having fun in the sun.

3 responses so far

Jul 18 2008

Disney Swing Set Princesses

Published by under Adventures,Parenting

Well, it finally arrived. A few weeks ago I ordered the girls the Disney Princess Swing Set from Sears. they love to swing in our arms. The stores here do not stock them so we had to wait for it to be shipped here. It arrived on Tuesday and we picked it up and set it up on Wednesday. (I could write a whole post on the set up and instructions alone). What was “supposed” to take approx 1 hour according to the instructions took well over 4 hours and there were two frustrated parents at the end. But it was all for a good cause. The girls love it, I am sure it will give them many years of summer fun in the sun. Next year’s backyard purchase… a play house.

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Oh, Aunty Leah, its time for a visit again, Kassie won’t keep her glasses on again.

One response so far

Jul 11 2008

Lovin’ Summer

Published by under Family,Twins

Sorry about being such a delinquent blogger but we have been enjoying the great summer weather. It has been fairly hot and dry here (except for the rain the last three days). We got the girls a paddling pool and it is a hit. Lena loves the water, always has. Kassie wasn’t too sure about it last year, and for about 2 seconds I thought the paddling pool might not go over so well but she loves it. She has perfected the art of spalshing with her hands and feet. Lena splashes with her hands but like everything else, Kassie dominates the action, making us all wet and barely letting Lena get a splash in.

It feels good to finally be able to do some “normal” kid things with the girls. I can’t wait for our Disney Princess Swing Set to come in.

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2 responses so far

Jun 13 2008

Disney Princess Chairs

Published by under Cerebral Palsy,Daily,Parenting

I am so proud of my big little girls! I bought them foam fuzzy arm chairs with the Disney princesses on them and THEY CAN SIT IN THEM! They love them. They look so grown up and they are so proud of themselves. Go girls!

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Oh and they actually watched some TV in them. Not that I am a big TV pusher but it would not be a bad thing if something or someone else could be their entertainment for a few minutes.

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5 responses so far

Jun 06 2008

Little People

Published by under Daily,Parenting,Preemies

I got a great deal of some Fisher Price Little People play sets. I was going to save them for the girls’ birthday but I decided not to. They needed some more advanced toys with doors to open and people and animals to pretend with etc. I saw some velcro fruit and veggies the other day, I think I will have to go back and get them. Some more Little People might be good too… since the girls seem to like them.

It’s funny but sort of sad. I feel like I of all people have been holding them back. We have been so caught up in appointments and therapy and “oh they will always be behind” crap that I have not been letting them just be little girls. It’s time we did some serious playing, pretending and coloring. You know, being kids.

The Saskatoon Children’s Festival is on this week, I think we might have to make a special trip to the city to play. Nana, when are you free to go to Kinsmen Park?

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2 responses so far

Jun 04 2008

Quadruplets?

Published by under Daily,Family,Twins

NO, I am not pregnant and definitely not with quadruplets.

I had to show off the rag dolls that my Aunt Linda made the girls for their Birthday/Christmas. They are old enough to enjoy them a little now. They are so cute. Both girls have a teddy bear and pajamas to match the ones their dolls have. We will treasure them forever.

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One response so far

May 30 2008

Catching Up

Published by under Daily,Health,Parenting

Oh Boy! The Month of May has been crazy around here. It started off not too bad. It took a turn for the worse when we took a short 3 day trip to Edmonton on the 7th and went down hill from there. Call it a coincidence or Lena hates Edmonton. We have only taken  the girls away from home twice, both times to Edmonton. The first time Lena became very ill with a shunt infection. After coming home we spent more than 5 weeks in the hospital battling a very nasty bug. You can read more about that ordeal starting here.  The second time, a few weeks ago, all was well when we left home. When we got to Edmonton the hotel had lost our reservation and as we discussed the matter with the hotel clerk, Lena started crying, hard. She never cries. We got a room and rushed her upstairs just in time for her to vomit all over me. Yeah, an excellent start to our trip.

Long story short, we had an awful “holiday” Lena was miserable to whole time. We even took her to the Children’s hospital one night to rule out a shunt issue (after last time I wasn’t taking chances). After 3 days of crying and general discomfort for all parties involved we came home and went straight to our hospital, where they know her.

May 7-10 Edmonton, crying and very upset when awake.

May 10 – Hospital to rule out shunt, nope, no shunt problem just a nasty virus.

May 11th (Mother’s day) – Lena breaks out in a body rash, back to the hospital (viral rash confirms last night’s diagnosis). Yep, I had my mother’s day dinner with my Mom in the ER – pizza.

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May 12th back to the hospital for repeat blood work, it wasn’t so great on the 10th – by now she seems to be a bit better, not so irritable. Blood work still sucks, they consider admitting her but decide to wait two more days.

May 14th Lena is great, had lots of sleep and is herself again, blood work comes back almost normal, I take a huge sigh of relief and boogie on out of the hospital.

May 13th Lena is great, Kassie is great we go to PT in the morning. By noon Lena is miserable again. Yeah!

May 14th Now desperate, I call every Dr. I can to find out why Lena is still miserable. We go to see our Neonatologist, Dr. Givelichian. Probably wasn’t done with the virus, too much too soon. Fluids and rest. That night she slept 17 hours, woke up happy and has been great ever since.

This takes us to the May long weekend in Canada. For Christmas I got tickets to see the Phantom of the Opera in Saskatoon on the 17th. I love musicals and was very much looking forward to the night out. With Lena sick, I wasn’t sure I would be able to go. She woke up great on Saturday the 17th and stayed that way. As promised by bestest friend Leah and Faith babysat so that Wayne and I could go out. The girls were upset when we left but were otherwise great for their babysitters and we did our best to relax.  Really I tried, I think I may have even succeeded for awhile.

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Side note: the Phantom is not bad but it is not the best musical I have ever seen. I enjoyed Miss Saigon and CATS much better.

The weekend also brought my birthday. I got to sleep all night long, and woke up to some very cute kids bearing gifts. Kassie was very excited to be part of the birthday action. Wayne and the girls bought me a beautiful white gold ring with three diamonds, one for each of them. I love it.

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Leah stayed the weekend and we had some good girl time visiting, planting the garden, baking cookies and she even cleaned out the chicken coop. (yeah I know she’s an angel) She really is great with the girls, she even got Kassie to wear her glasses. She now wears them more than she takes them off. Thanks Leah.

The girls have really done a lot of growing up this month. When I look at them they look so big, they definitely do not look like babies any more, they are toddlers now. Kassie wants to be into everything and she definitely has an opinion about things. She hates to be left alone and cries alligator tears whenever I have to leave the room and don’t bring her with me. Lena has made some great improvements too. She is expressing herself more and is making some great progress in the gross and fine motor departments. She pulls on the highchair handle to pull herself up and has started using her fingers to grab more. And for the drum roll…. she is very close to independent sitting. When she is not too tight she can now sit all by herself for a few moments, sometimes as long as a minute. Go Lena!

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3 responses so far

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