Monday, 29 September 2008
Drinking!!!
Ashley made some really nice progress today she managed to drink 5 oz of water from her sippy cup. This is real progress for her and I was thrilled that the cup was empty. She didn't dump it out either just keep taking sip after sip while on a walk to pick up her brothers after school. She been drinking for a little while now but usually just an 1 oz or maybe 2 but today she finished all 5 oz.
Saturday, 27 September 2008
Reptilla Zoo
This as been a very busy week my 8 year old was having a little trouble at school which had me more then a little distracted even from blogging. We sorted that out come Thursday and Friday was a Professional Development for the teachers which means no school for my boys. For some fun I took them over to Reptila a local zoo even though I'm not that big a fan of snakes and such. I was so surprised how big the Reptiles were that they had there. We are in Canada after all but they had Nile Crocodiles and American Alligators my god. I got my camera back in working order from Sony just in time for this visit. Here's the scary photos:
We all touched this snake it was creepy!!! We also got close and personal with a caimen and a large Iguna.
Monday, 22 September 2008
The girl can eat !!!
Today Ashley made me so happy following physio therapy this morning we were invited to a good friends to visit with her and her sweet baby. While we were there i was enjoying a yummy toasted bagel with homemade strawberry jam. I offered Ashley some and she really enjoyed it. She was really chewing and enjoying pieces of bagel i gave her piece 1" by 1/2" pieces that definitely needed to be chewed and she managed no problem and opened her mouth for one bite after another she ate at least 10 bites. Mommy was very impressed. I really see her eating progressing and just had to share.
Wednesday, 17 September 2008
Special Exposure Wednesday # 6
Well it's a week later and my camera is still here needing to be dropped off at Sony Canada for repair. I actually live about 20 minutes from their office but with nursery school and therapy there just isn't a day free to get there yet. I really miss photographing everything Ashley and her two brother do. Can a camera be such a necessity just as my laptop? I wonder what that says about me. She was awesome at physio on Monday she took a step on her own totally unsupported that would have been a priceless photo and OT was also fun today too. I'm left with some of more photos from her 1st year she sure was a cute baby i have to admit even if I'm more then a little biases.
Saturday, 13 September 2008
Chromosome 14q Deletion Syndrome
I've been getting a few questions about Ashley diagnosis and I thought I should write something about it and how it effects her. When Ashley was just 6 weeks old her blood work from genetics came back and told us that she was missing genetic material on the long arm of her 14th chromosome. We were told she has chromosome 14q interstitial deletion syndrome or 46, XX, del14(13q21q) to be more exact. Which means that has a small deletion of genes on her 14th chromosome. It also means she is extra special and a very unique lucky little girl.
At birth Ashley was born full term but only weighing 4lbs 9z she was adorable with red hair and blue eyes but started getting very sick shortly after birth. Her lungs had not developed and when born her heart was still bi-passing her lungs like she still was in the womb this was very scary stuff she admitted to the Neonatal Intensive Care Unit (NICU) at the Sick Children's Hospital in Toronto. The staff there were totally amazing they saved her little life many times she was on a oscillating ventilator which help to expand her lungs something she could not do on her own as soon as she arrived at the NICU they had to comatose her as her body needed to focus on breathing and she was to ill even use her digestive system or even move around that would use up to much energy. After many days of care her lungs were responding, she suffered a few complications from being there a small thrombosis or blood clot in her heart had formed and she also suffered a small stroke. The news of all these was almost too much for mommy and daddy to bear but we managed through some how Ashley was our strength she was so sweet and loving and we knew she had lots of life ahead of her two brothers to play with and a big family praying for her. Her lungs responded very well to the treatment and around 9 days she was off the ventilator and was allowed to wake up and move and poo. I remember how exciting it was that she could finally poo. I even remember her lifting her little hand above her head for the first time it was so exciting. Around six weeks we got the call that they had confirmed she had a rare interstitial deletion on chromosome 14q. That was devastating news which took me a long time to adsorb and accept. Ashley finally came home from hospital at 7 1/2 weeks on oxygen and stayed on oxygen for the next 14 months. In her first two years she was re-admitted many times back to Sickkids some stays were really long all of July and most of August in her first year you wonder if your ever coming home. When she was 3 months she had grown and her little lungs and heart had trouble keeping up with the oxygen her body required she was too sick to be at home and the docs wanted to run many tests including a cardiac catherdization and biopsy on her lungs this was pretty serious they were worried if she was strong enough to survive the procedure i knew she would and she did they were very pleased with what they found just very premature lungs they believe as though her lungs at birth were like a 24 week baby so just very premature and her heart was good she need more time for her lungs to develop.
Lucky for Ashley and many babies is lungs continue to grow and develop after birth until your 8 years old they believe. Ashley would need extra oxygen for awhile maybe a few years but her heart and lungs would get better with time.
Ashley came home again at 4 1/2 months but spent much of her first year in out of hospital fighting off colds, she had rsv, pneumonia, and even a urinary tract infection that all landed her in hospital for a week or two at a time. Slowly with time despite a rough first year she was getting stronger and her lungs were improving even her heart slowed down to a more acceptable pace. By the time Ashley was 14 months old she came off the oxygen day and night, except a few stays in the hospital for colds that following winter she has been doing really well breathing all on her own. No inhalers or oxygen needed.
Motor Skills:
Her chromosome deletion also means her development is slowed she needs lots of help from physio, occupational therapy to learn to move and play. She works really hard at this and has made wonderful progress with sitting, and standing. Now at 3 she is still unable to stand totally independently but is progressing towards that thanks to her CME therapy (physio). She also has learned to use her hands to pick up almost anything which is really amazing to mommy and daddy. She will continue to need PT for quite some time now to learn to walk, jump and run. She will need OT to learn to release objects better, write, draw and use utensil to eat.
Feeding:
Feeding has been a challenge for Ashley she did well in her first year tripled her weight but from one year to two years she gained no weight at all. Her doctors were very concerned and it was decided she needed a g-tube. A g-tube is a surgically placed tube which allows us to give her extra calories to boost her weight. It was a painful decision but necessary to allow her to have this placed. The surgery and recovery were painful for Ashley which was unusual and not expected but she managed to recover and it has been in for 17 months in that time we did a lot of learning she did some unlearning. Ashley gave up drinking once she had the tube that was disappointing but not unusual i learned as she just was not hungry we were pumping her with formula around the clock therefor quickly refused to eat or drink and within a month or so she was pretty much primarily tube feed. It was disappointing but she was gaining weight something that had not happened for over year prior to the tube.
She was just 16 pounds when the tube was inserted at 2 years old and now at 3 1/4 years old she is 21 pounds a nice increase and she back on the chart! Her doctors are pleased with this weight gain. She also now interested in eating and drinking again which is music to our ears we love to see her drinking from her cup eating blueberries and last week some pizza crust and today grill cheese. She started to bite and chew a little it is so wonderful. We are very thrilled with this progress.
Speech:
Speech is another big challenge for Ashley we know she has lots to say but it's so hard for her to get words out. She has been successful in saying many things a few times like hi, ouch, Mommy, no no no, "wuv you", yeah, yes and even an "I'm okay" she is always thrilled when these words come out just as we are. She learning to make choice through a picture communication system (PCS). We also teaching her sign language so if the words don't come she can still communicate with us some how.
Basically Ashely is a lot like other little three year olds she loves her school and enjoys seeing kids her age and getting their attention really pleases her. She loves painting, playing and circle time. She can even eat snacks now with her friends she is learning to use the potty and and I think she almost ready for a big girl bed. I hope to continue to help her in every way possible so that she can have a happy, fun childhood with a bright future ahead of her. She teaches me everyday to appreciate all the small things in life, and not to take anything for granted. I truly feel like the luckiest person in the world that I am her Mother.
At birth Ashley was born full term but only weighing 4lbs 9z she was adorable with red hair and blue eyes but started getting very sick shortly after birth. Her lungs had not developed and when born her heart was still bi-passing her lungs like she still was in the womb this was very scary stuff she admitted to the Neonatal Intensive Care Unit (NICU) at the Sick Children's Hospital in Toronto. The staff there were totally amazing they saved her little life many times she was on a oscillating ventilator which help to expand her lungs something she could not do on her own as soon as she arrived at the NICU they had to comatose her as her body needed to focus on breathing and she was to ill even use her digestive system or even move around that would use up to much energy. After many days of care her lungs were responding, she suffered a few complications from being there a small thrombosis or blood clot in her heart had formed and she also suffered a small stroke. The news of all these was almost too much for mommy and daddy to bear but we managed through some how Ashley was our strength she was so sweet and loving and we knew she had lots of life ahead of her two brothers to play with and a big family praying for her. Her lungs responded very well to the treatment and around 9 days she was off the ventilator and was allowed to wake up and move and poo. I remember how exciting it was that she could finally poo. I even remember her lifting her little hand above her head for the first time it was so exciting. Around six weeks we got the call that they had confirmed she had a rare interstitial deletion on chromosome 14q. That was devastating news which took me a long time to adsorb and accept. Ashley finally came home from hospital at 7 1/2 weeks on oxygen and stayed on oxygen for the next 14 months. In her first two years she was re-admitted many times back to Sickkids some stays were really long all of July and most of August in her first year you wonder if your ever coming home. When she was 3 months she had grown and her little lungs and heart had trouble keeping up with the oxygen her body required she was too sick to be at home and the docs wanted to run many tests including a cardiac catherdization and biopsy on her lungs this was pretty serious they were worried if she was strong enough to survive the procedure i knew she would and she did they were very pleased with what they found just very premature lungs they believe as though her lungs at birth were like a 24 week baby so just very premature and her heart was good she need more time for her lungs to develop.
Lucky for Ashley and many babies is lungs continue to grow and develop after birth until your 8 years old they believe. Ashley would need extra oxygen for awhile maybe a few years but her heart and lungs would get better with time.
Ashley came home again at 4 1/2 months but spent much of her first year in out of hospital fighting off colds, she had rsv, pneumonia, and even a urinary tract infection that all landed her in hospital for a week or two at a time. Slowly with time despite a rough first year she was getting stronger and her lungs were improving even her heart slowed down to a more acceptable pace. By the time Ashley was 14 months old she came off the oxygen day and night, except a few stays in the hospital for colds that following winter she has been doing really well breathing all on her own. No inhalers or oxygen needed.
Motor Skills:
Her chromosome deletion also means her development is slowed she needs lots of help from physio, occupational therapy to learn to move and play. She works really hard at this and has made wonderful progress with sitting, and standing. Now at 3 she is still unable to stand totally independently but is progressing towards that thanks to her CME therapy (physio). She also has learned to use her hands to pick up almost anything which is really amazing to mommy and daddy. She will continue to need PT for quite some time now to learn to walk, jump and run. She will need OT to learn to release objects better, write, draw and use utensil to eat.
Feeding:
Feeding has been a challenge for Ashley she did well in her first year tripled her weight but from one year to two years she gained no weight at all. Her doctors were very concerned and it was decided she needed a g-tube. A g-tube is a surgically placed tube which allows us to give her extra calories to boost her weight. It was a painful decision but necessary to allow her to have this placed. The surgery and recovery were painful for Ashley which was unusual and not expected but she managed to recover and it has been in for 17 months in that time we did a lot of learning she did some unlearning. Ashley gave up drinking once she had the tube that was disappointing but not unusual i learned as she just was not hungry we were pumping her with formula around the clock therefor quickly refused to eat or drink and within a month or so she was pretty much primarily tube feed. It was disappointing but she was gaining weight something that had not happened for over year prior to the tube.
She was just 16 pounds when the tube was inserted at 2 years old and now at 3 1/4 years old she is 21 pounds a nice increase and she back on the chart! Her doctors are pleased with this weight gain. She also now interested in eating and drinking again which is music to our ears we love to see her drinking from her cup eating blueberries and last week some pizza crust and today grill cheese. She started to bite and chew a little it is so wonderful. We are very thrilled with this progress.
Speech:
Speech is another big challenge for Ashley we know she has lots to say but it's so hard for her to get words out. She has been successful in saying many things a few times like hi, ouch, Mommy, no no no, "wuv you", yeah, yes and even an "I'm okay" she is always thrilled when these words come out just as we are. She learning to make choice through a picture communication system (PCS). We also teaching her sign language so if the words don't come she can still communicate with us some how.
Basically Ashely is a lot like other little three year olds she loves her school and enjoys seeing kids her age and getting their attention really pleases her. She loves painting, playing and circle time. She can even eat snacks now with her friends she is learning to use the potty and and I think she almost ready for a big girl bed. I hope to continue to help her in every way possible so that she can have a happy, fun childhood with a bright future ahead of her. She teaches me everyday to appreciate all the small things in life, and not to take anything for granted. I truly feel like the luckiest person in the world that I am her Mother.
Wednesday, 10 September 2008
Special Exposure Wednesday #5
I'm really missing my camera which is in bad need of repair and my ThinkPad it was property of my employer and since I resigned in July i had to return it this week. I guess i wasn't rushing to bring it back it was a really nice perk and now I'm back to my laptop from 2002 need i say more it's more then a little slow. However i did have some really nice old photos of Ashley as a little babe on the harddrive. I thought I'd share this week.
Ashley in Ottawa at 16 months and fresh off the Oxygen this was her first trip to visit her Grandparents in their home. I think we brought the Oxygen just in case for that trip. She now has been heathly and lucky enough to make many more trips to Ottawa for lots of fun. She even looks a little chubby here. 
Ashley during a short stay at home from the hospital that spring on her O2. She was three months old here:
Ashley in Ottawa at 16 months and fresh off the Oxygen this was her first trip to visit her Grandparents in their home. I think we brought the Oxygen just in case for that trip. She now has been heathly and lucky enough to make many more trips to Ottawa for lots of fun. She even looks a little chubby here. Friday, 5 September 2008
Next steps with PCS
Augmentative Communication in action at our house.
Today Laurissa came over to see Ashley she is from the Children's Treatment Network which is the rehabilitation network the government provides to help Ashley. Laurissa is a CDA(Communicative Disorders Assistant) and she is really great at what she does she set me up with all the PCS (picture communication system) we are using to allow Ashley to do choice making. She also spent time earlier this year showing me how to show Ashley how to form the P, B and M sounds and where i can put my fingers around her lips to help guide those sounds.
Today she brought a Mr Potato Head with all the parts and a duotag with pages of PECS of body parts, and another page with PECS of actions that can be completed with those body parts, like peekaboo for eyes, kiss for the mouth, jumping for the feet. We showed Ashley the PCS for the eyes then offered a choice of two body parts one in each hand and said Ashley pick up the eyes. She was successful 4 out of 5 times to select the body part requested. We placed the eyes on Mr Potato Head and showed her the PCS for Peekaboo and proceeded to have Mr Potato head play peekaboo with Ashley. Ashley enjoyed every minute of it and this activity helped Ashley to label PCS with body different body parts and learn PECS of various actions. If Ashley is going to learn to use a communication device she will need to learn lots of PCS and this was a very fun way that was enjoyable for her.
She also brought a balloon and a pump to blow up balloons and a sheet with all kinds of PCS for this activity. Ashley was all giggles when we let the balloon loose and it deflated while flying across the room. We showed her PCS for fun, more, blowing up balloon. She loved this too. Larissa talked to me about doing more role playing with Ashley such as with baby dolls feeding, sleeping, brushing her dolls teeth. Ashley needs more toys that are more typical of three year olds for pretend play. I think Santa will have a long list this year.
I only wish Laurissa could come more often she can only visit Ashley every 6 weeks are next appointment is late October.
Today Laurissa came over to see Ashley she is from the Children's Treatment Network which is the rehabilitation network the government provides to help Ashley. Laurissa is a CDA(Communicative Disorders Assistant) and she is really great at what she does she set me up with all the PCS (picture communication system) we are using to allow Ashley to do choice making. She also spent time earlier this year showing me how to show Ashley how to form the P, B and M sounds and where i can put my fingers around her lips to help guide those sounds.
Today she brought a Mr Potato Head with all the parts and a duotag with pages of PECS of body parts, and another page with PECS of actions that can be completed with those body parts, like peekaboo for eyes, kiss for the mouth, jumping for the feet. We showed Ashley the PCS for the eyes then offered a choice of two body parts one in each hand and said Ashley pick up the eyes. She was successful 4 out of 5 times to select the body part requested. We placed the eyes on Mr Potato Head and showed her the PCS for Peekaboo and proceeded to have Mr Potato head play peekaboo with Ashley. Ashley enjoyed every minute of it and this activity helped Ashley to label PCS with body different body parts and learn PECS of various actions. If Ashley is going to learn to use a communication device she will need to learn lots of PCS and this was a very fun way that was enjoyable for her.
She also brought a balloon and a pump to blow up balloons and a sheet with all kinds of PCS for this activity. Ashley was all giggles when we let the balloon loose and it deflated while flying across the room. We showed her PCS for fun, more, blowing up balloon. She loved this too. Larissa talked to me about doing more role playing with Ashley such as with baby dolls feeding, sleeping, brushing her dolls teeth. Ashley needs more toys that are more typical of three year olds for pretend play. I think Santa will have a long list this year.
I only wish Laurissa could come more often she can only visit Ashley every 6 weeks are next appointment is late October.
Special Pencils
First week of school is all done and both my boys received a special pencil from their teachers a reward for excellent behaviour all week. Damon told me he received his for being so nice all week only a small group of children in his class received this special reward.
James worked hard in class all week and was respectful to his peers and teachers a like. This is such an improvement compared to previous years where my oldest son teachers usually wanted a word with me after school within the first few days. Those words would always make me nervous. I can't be more pleased James is really maturing and is better a making positive choices and seems very determine to do the right thing. After school we are celebrating a close to the week with movies from blockbuster, popcorn and 7up. I love celebrating the little things with them.
James worked hard in class all week and was respectful to his peers and teachers a like. This is such an improvement compared to previous years where my oldest son teachers usually wanted a word with me after school within the first few days. Those words would always make me nervous. I can't be more pleased James is really maturing and is better a making positive choices and seems very determine to do the right thing. After school we are celebrating a close to the week with movies from blockbuster, popcorn and 7up. I love celebrating the little things with them.
Thursday, 4 September 2008
Day 2 at the Little School House
I'm so happy to report that Ashley's second day went wonderfully, no crying lots of playing, she made arts and crafts, played with the playdough and all the kids saw and came to join her. She loved the parachute play with pom poms. She ate some banana at snack time they served and shared her watermelon sticks with her new friends. She also did lots of walking from one activity to the next with assistance of course. The day was a big success YIPPEE!
Wednesday, 3 September 2008
Special Exposure Wednesday #4
Here's a look at occupational therapy at home this morning. Ashley fine motor skills are coming along so nicely she can really use her hands to pick up many different things, she can pick up her cup with one hand and turn it around to get the spout in her mounth (all by herself) and pass it from hand to hand. Way to go Ashley! Mommy is so proud of you.
Oh and the drinking too is a big accomplishment for my little one!!
Tuesday, 2 September 2008
Loud 1st day for little ears.
Well the first day is over and I'm happy to have all three home now. The new found free time went by very quickly for me.
Here's some photos of Ashley and Sarah at The Little School House. Ashley easily manged to pull her name tag off a few times really nice fine motor skills.
Here's some photos of Ashley and Sarah at The Little School House. Ashley easily manged to pull her name tag off a few times really nice fine motor skills.
Ashley was happy at school until the noise level raised above her comfort zone. She really not all that comfortable with noise despite living with two brothers. You would assume two boys are relatively loud but yelling isn't acceptable at this house so for the most part it is pretty quite here.
Sarah her nurse and aid at school told me she settles down quickly when the noise level did but as soon as it started up she was in tears. Groups of people clapping is one thing she is not really comfortable with. The kids clapped frequently and Sarah had to take Ashley out of the room a few times as she was getting really worked up, which leads to vomiting at times, not pretty. Lucky it didn't come to this. I'm sure Ashley will need a number of weeks to adjust to nursery school. Sarah and I are going to be patient and maybe I will practice some clapping with her brothers at home.
At the nursery school they only have a regular toilet i guess most 2 and 3 year olds don't need a smaller seat. Ashley was way too small for the toilet she tried it today and she could fall right in. I learned that i can bring a potty chair for her but have to bring it back and forth every time. I can't leave it there for some reason.. i guess for hygiene reason. I'll be carrying it in and out as well as her and her backpack which sounds silly to me but necessary i guess. I know this is a small problem though.
Damon had a great day loved his class and his teacher he has the same teacher as his brother did for grade one. James also likes his teacher and class a lot so i think everything went very well.
First Day of School
I just dropped all the kids off at school James grade 3, Damon grade 1 and Ashley is enjoying nursary school at the Little School House this morning. Ashley only there for 2 hours and 15 mins more then enough time for me to miss her. She was in good spirits well rested and happy to see the other kids.
What upset me this morning is my camera needs to be serviced the display screen stays black so i couldn't see if the photos I took turned out, and all my pictures have way too much sun . As I type this I'm on hold with Sony Canada to see if they can fix it asap I've been holding over 14 minutes already and getting more frustrated by the minute.
This was the best photo of the bunch, you can't really see the great big smiles and excited expressions.
What upset me this morning is my camera needs to be serviced the display screen stays black so i couldn't see if the photos I took turned out, and all my pictures have way too much sun . As I type this I'm on hold with Sony Canada to see if they can fix it asap I've been holding over 14 minutes already and getting more frustrated by the minute.
This was the best photo of the bunch, you can't really see the great big smiles and excited expressions.
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