God knows what 2012 brings...
2010
Friday, December 23, 2011
Happy Holidays! On a good note
Here's me and my brother photographed in a sleigh this year, for my first Christmas I was in a chimney!
God knows what 2012 brings...
2010
God knows what 2012 brings...
2010
My diet
A problematic matter with Max, as we learn and live the symptoms of Williams Syndrome.
When Max was born, he had terrible reflux and found it hard to get 'his wind up' He would cry because it hurt to burp. Tummy time was limited time, sitting up was hard to do, and also came late around 9 months. At 13 months he was beginning to crawl, with the reflux still a barrier, he didn't take his first steps until 18 months. That was thanks to early intervention and therapy help we have been given for Max. We are beginning to see little improvements every week. It's teaching us as his parents the extra steps we need to take to implement on a daily basis and really go back to basics' with our teaching.
Diet
We were feeding Max very small amounts of milk, even through nursing, I would give him only 3-4 oz a feed, every 3 hours during the day, because of the reflux. After 9 months of nursing, I transitioned to the Simulac formula bottles,they were 8oz bottles, we would still only give him around 4oz max per feed. At 13 months we switched the formula to whole milk. This is when I started to see a change to his bowl movements and struggle with constipation. We know the milk is a part of the cause, but the fat from the milk is good for him at the same time. A catch 22.
Next step, we took him to checked for allergies and was negative for all environmental and milk allergies. So he's not allergic to Milk and that leads us to believe he has a very sensitive digestive system.
This is the Williams piece, or missing piece we call it. Because of the sensativity in his system, we want to avoid Hypercalcemia.
Hypercalcemia has been reported for ∼15% of infants and children with WS. The hypercalcemia in infancy usually occurs in the first years of life, resolving in most cases by 4 years of age, but it may recur during puberty. The cause of the hypercalcemia is unknown. The hypercalcemia typically is mild and transient but occasionally can be severe and life-threatening.
This is also interesting, when I was pregnant with Max I had to go to the hospital at 32 weeks, I thought it may be an early labor, close, I had developed a kidney stone, (We named him pebble :) they said from eating too much calcium. Another coincidence with WS.We try to encourage Max to drink a lot of water and prune juice, fiber bread, peaches and other fruits... He's probably the only kid on the block who drinks and likes prune juice! Lately, I have been giving him a little peppermint tea and use chamomile tea for his gums/teething pain.
Today, we continue to give Max whole milk because we want him to have the min daily calcium intake. 15-20oz a day. Probably equivalent to one bowl of cereal. He will sometimes have 3oz in the morning if he wakes up early and we want him to sleep longer! and 5-6oz before his nap and then nighttime, before bed another 5-6oz.
In moderations, only a little cheese, yogurt, orange juice etc. Almost everything we eat contains calcium. Max still is on Gerber stage 2 and 3 veggies and fruits. I like these because I don't always have time to whip up home made, so these are perfect with a slice of bread, crackers. For hot food snacks he likes spaghetti'os, soup, egg and toast. For dinner in the evening we give him what we eat, salmon a lot of times, chicken, turkey, spaghetti, green beans and mash potatoes.
The pediatrician recently recommended to try fiber drop supplements from the drugstore.
If anyone out there has a child that has the same difficultly, I would really like to learn of your experience and routine. It breaks our heart every time we see Max hurting and stresses himself out, his heart def doesn't benefit from it.
Photo's
Occasionally he has a few treats, here is a collection of Max's favorites with food
Love's peas!
When Max was born, he had terrible reflux and found it hard to get 'his wind up' He would cry because it hurt to burp. Tummy time was limited time, sitting up was hard to do, and also came late around 9 months. At 13 months he was beginning to crawl, with the reflux still a barrier, he didn't take his first steps until 18 months. That was thanks to early intervention and therapy help we have been given for Max. We are beginning to see little improvements every week. It's teaching us as his parents the extra steps we need to take to implement on a daily basis and really go back to basics' with our teaching.
Diet
We were feeding Max very small amounts of milk, even through nursing, I would give him only 3-4 oz a feed, every 3 hours during the day, because of the reflux. After 9 months of nursing, I transitioned to the Simulac formula bottles,they were 8oz bottles, we would still only give him around 4oz max per feed. At 13 months we switched the formula to whole milk. This is when I started to see a change to his bowl movements and struggle with constipation. We know the milk is a part of the cause, but the fat from the milk is good for him at the same time. A catch 22.
Next step, we took him to checked for allergies and was negative for all environmental and milk allergies. So he's not allergic to Milk and that leads us to believe he has a very sensitive digestive system.
This is the Williams piece, or missing piece we call it. Because of the sensativity in his system, we want to avoid Hypercalcemia.
Hypercalcemia has been reported for ∼15% of infants and children with WS. The hypercalcemia in infancy usually occurs in the first years of life, resolving in most cases by 4 years of age, but it may recur during puberty. The cause of the hypercalcemia is unknown. The hypercalcemia typically is mild and transient but occasionally can be severe and life-threatening.
This is also interesting, when I was pregnant with Max I had to go to the hospital at 32 weeks, I thought it may be an early labor, close, I had developed a kidney stone, (We named him pebble :) they said from eating too much calcium. Another coincidence with WS.
Today, we continue to give Max whole milk because we want him to have the min daily calcium intake. 15-20oz a day. Probably equivalent to one bowl of cereal. He will sometimes have 3oz in the morning if he wakes up early and we want him to sleep longer! and 5-6oz before his nap and then nighttime, before bed another 5-6oz.
In moderations, only a little cheese, yogurt, orange juice etc. Almost everything we eat contains calcium. Max still is on Gerber stage 2 and 3 veggies and fruits. I like these because I don't always have time to whip up home made, so these are perfect with a slice of bread, crackers. For hot food snacks he likes spaghetti'os, soup, egg and toast. For dinner in the evening we give him what we eat, salmon a lot of times, chicken, turkey, spaghetti, green beans and mash potatoes.
The pediatrician recently recommended to try fiber drop supplements from the drugstore.
If anyone out there has a child that has the same difficultly, I would really like to learn of your experience and routine. It breaks our heart every time we see Max hurting and stresses himself out, his heart def doesn't benefit from it.
Photo's
Occasionally he has a few treats, here is a collection of Max's favorites with food
Love's peas!
Farley's rusks...
Serving breakfast...
Dinners out..haha
Dinner dates...
Can't leave out the 1st Birthday cake...
& loves biting pizza crust...
Thursday, December 22, 2011
Skidamarink!
Max sits and watches "super simple songs" on YOUTUBE, I use my laptop computer and we do this together twice a day for 15-20mins whilst we are in the kitchen, he is in his highchair, I am cooking dinner or he is snacking. On TV, Max likes Yo Gabba Gabba for the music they always play. Not forgetting his #1 favorite Elmo's World.
I think music will be a big part of Max's life. I am encouraging this early. It's funny as maternal instincts go, I'd actually played my boom box to my belly when he was inside. I'd play 'Sedona spa' before bed. Now I find myself speaking to Max in song a lot of times! I repeat words to him a thousand times for repetition!
I plan to enroll Max, in a program in the Spring, at 'Kindermusik' for his age group. It's about a 20 week class, every Saturday.
"Music is very closely linked with language. Some people believe that we may have started to sing before we started to speak"
The song in the link below if watched, sticks in your mind all day, which is actually really not a bad thing to sing!
Skidamarink, dink dink... I love you!
http://www.youtube.com/watch?v=7vPzg7VLUsY
I think music will be a big part of Max's life. I am encouraging this early. It's funny as maternal instincts go, I'd actually played my boom box to my belly when he was inside. I'd play 'Sedona spa' before bed. Now I find myself speaking to Max in song a lot of times! I repeat words to him a thousand times for repetition!
I plan to enroll Max, in a program in the Spring, at 'Kindermusik' for his age group. It's about a 20 week class, every Saturday.
"Music is very closely linked with language. Some people believe that we may have started to sing before we started to speak"
The song in the link below if watched, sticks in your mind all day, which is actually really not a bad thing to sing!
Skidamarink, dink dink... I love you!
http://www.youtube.com/watch?v=7vPzg7VLUsY
Saturday, December 17, 2011
Hosting my first WSA event
On January 21, 2012. We plan to spread a little love!
We are inviting babies and children to our event in Collegeville, PA Their pictures will be taken in and around a custom built whimsical "house of sweets" to raise money for my cause.
This is a unique fun thing and we are busy putting it all together for it all to come together.
http://www.mandykeepphotography.com/mk_preview_for_sweet_hearts_project.pdf
We are inviting babies and children to our event in Collegeville, PA Their pictures will be taken in and around a custom built whimsical "house of sweets" to raise money for my cause.
This is a unique fun thing and we are busy putting it all together for it all to come together.
Monday, December 12, 2011
Friday, December 9, 2011
My therapy
Max currently has 3 therapists for 1 hour each week, who we have become to know and love for helping Max along. He has Pam, who's is Special Instructor, Tina for Occupational and Anthony is his Physical Therapist.
Below are some of the best practices they each recommend for us to work on with Max.
For the first and second quarter so far;
SI
We love Pam, she is terrific with Max, very fun, outgoing and clear. I learn a lot from her! She will sing songs to him all the time and it's paying off, he's starting saying 'row row row' Now, when I am playing with Max my voice often sounds like Pam's now, she is an excellent role model for Max to have. She visits Max on Tuesday's.
OT
Tina is terrific too! She usually visits after Anthony comes and just in time for snack time. Tina sometimes teaches Max to eat with a spoon or fork, drink from a cup without a lid, and usually gets food all over her!
Max has learned so many things from her, being that this is an important area for Max to work. We are thankful for Tina. She may make a post in the blog later on.
PT (stands for pain and torture for Max!)
Poor Anthony, he has a tough time getting Max happy to work out. In the beginning, before Max was walking he was doubling his steps every week. It was amazing to see the speedy improvements because of Anthony's help. I think in a matter of 3 weeks Max was up and walking about . Now that Max is walking, Anthony is continuing to work on strengthening his core and introducing other exercises, using a seat, holding a 3lb ball and teaching him to squat down. Max doesn't enjoy the work outs very much but it's definitely paying off.
Below are some of the best practices they each recommend for us to work on with Max.
For the first and second quarter so far;
SI
We love Pam, she is terrific with Max, very fun, outgoing and clear. I learn a lot from her! She will sing songs to him all the time and it's paying off, he's starting saying 'row row row' Now, when I am playing with Max my voice often sounds like Pam's now, she is an excellent role model for Max to have. She visits Max on Tuesday's.
- Make requests during daily routines ( e.g Do you want more puzzle pieces, snacks, blocks, drink, are you all done?
- Put a sign to as many words as you can when talking to Max
- Continue to give Max something to bite on, redirect when he slaps, hits, bites etc
- Introduce - flutes, bubbles, microphones - find at a dollar store
- Download nursery rhymes
- Putting 2 actions together, putting blocks in truck then "Go"!
- Continue to encourage him to use basic signs "all done" "More" "Eat" etc.
- Playing back and forth games,use exaggerated hand movements for "Go!"
- Use toothbrush, electric best/fingers to massage cheeks and lips to help wake up his mouth, this will make him more aware of his mouth
- Practice "where is?" cup, baby, body parts etc. Can also do this when reading books.
- When outside, use sights, sounds and smells
- Encourage Max to start reaching, pointing to what he wants.
- Place preferred objects out of reach and encourage him to imitate you and give light physical prompt if needed.
- Continue to focus on comprehension skills when @ home / outside (there's the car, tree, flowers etc.)
OT
Tina is terrific too! She usually visits after Anthony comes and just in time for snack time. Tina sometimes teaches Max to eat with a spoon or fork, drink from a cup without a lid, and usually gets food all over her!
Max has learned so many things from her, being that this is an important area for Max to work. We are thankful for Tina. She may make a post in the blog later on.
- Have Max attempt drinking from cup without lid
- Encourage use of spoon/fork
- Have Max play with cups in the bathtub (pouring water in and out of them)
- Continue to encourage to open boxes and containers
- Have Max squeeze a washcloth and demonstrate washing face or belly
- Encourage coloring
- Prop to sit/stand for fine motor tasks/block play
- Continue to encourage cup drinking and use of spoon
- Have Max manipulate toys by placing toys in tube or box to retrieve
- Continue encouraging Max to sit/stand vs. lay down to play with toys
- Push/pull activities
- Encourage Max to lift larger items with some weight to them (e.g. Pillows, containers filled with blocks)
- Standing at the wall to play with crayons on paper OR sticky notes for stability challenges.
- Explore new objects/activities with varying textures
PT (stands for pain and torture for Max!)
Poor Anthony, he has a tough time getting Max happy to work out. In the beginning, before Max was walking he was doubling his steps every week. It was amazing to see the speedy improvements because of Anthony's help. I think in a matter of 3 weeks Max was up and walking about . Now that Max is walking, Anthony is continuing to work on strengthening his core and introducing other exercises, using a seat, holding a 3lb ball and teaching him to squat down. Max doesn't enjoy the work outs very much but it's definitely paying off.
- Run with Max with both hands held and one hand held
- Keep backing Max up a little every time he walks to you
- Let Max crawl up the steps, help him crawl down. Help him put Left foot up every couple of steps.
- Keep Max on his feet as much as possible (walk with one or both hands holding push toy)
- Do exercises on the ball (sitting, on belly, sit ups)
- Do some wheel barrow walk
- Help Max stand up by getting to his hands and feet, pushing up from there
- See if Max will crawl down the bottom 5 steps on his own
- Hold a snack or something he wants just off the floor, so Max squats down to get it. Lift it back up so he stands up.
Wednesday, December 7, 2011
A gift from God
Yes you are.
Max is the sunshine of our lives and we love him very dearly. We have our run in's and I do my best to manage everything he needs and the frustration part. Majority of the time he is a happy go-lucky little boy. A few problems with constipation and it kills us everytime he's crying over it.
Raising a child with Williams is no burden. You do everything you can to be a better parent, to understand it best you can and try to fix and try to make things better.
We believe, Jim and I that Max was given a brother to help him, protect him and love him. We are blessed to have the both of them.
Max is the sunshine of our lives and we love him very dearly. We have our run in's and I do my best to manage everything he needs and the frustration part. Majority of the time he is a happy go-lucky little boy. A few problems with constipation and it kills us everytime he's crying over it.
Raising a child with Williams is no burden. You do everything you can to be a better parent, to understand it best you can and try to fix and try to make things better.
We believe, Jim and I that Max was given a brother to help him, protect him and love him. We are blessed to have the both of them.
My friends with WS
Some wonderful and inspiring comments I read... (Pictures in the enclosed link below)
"My boy brings sunshine to my life everyday and all those he meets. There is no purer love in the world!"
"There really is something so pure and magical about them"
"My Brother Is The Sunshine of My Life!"
"Thank you for saying that it is beautiful, i love having Williams syndrome to"
"I have to say, Williams Syndrome changed my life."
More here...
http://www.facebook.com/#!/media/set/?set=a.10150091816926824.273762.309265546823&type=3
"My boy brings sunshine to my life everyday and all those he meets. There is no purer love in the world!"
"There really is something so pure and magical about them"
"My Brother Is The Sunshine of My Life!"
"Thank you for saying that it is beautiful, i love having Williams syndrome to"
"I have to say, Williams Syndrome changed my life."
More here...
http://www.facebook.com/#!/media/set/?set=a.10150091816926824.273762.309265546823&type=3
Tuesday, December 6, 2011
"A gift of perseverance"
I recently was given Max's astrology chart by a good family friend. It was VERY interesting and insightful. It actually gave me a lot of hope. Max was born an Aries, very energetic indeed. My thought was, if we learned of his Aries personality traits, and then the traits from Williams, we can begin to understand him better as a person and be able to help him along.
ARIES He will always be affectionately demonstrative
WILLIAMS loquacious, affectionate, charming, open, and gentle
Max will always be attracted to people who offer peace and tranquility and will shy away from crowds and loud people.
He will always give what he can and whatever he does or gives is given with love
Max can inspire other people
He will be eager to explore and develop all of his talents and capabilities. Max has the character and resilience of a true survivor.
ARIES Music could become an important part of Max's life. He could show an interest, appreciation and talent in this area early in his life. He also possesses a high degree of artistic talent.
WILLIAMS individuals with WS can also tend to demonstrate a love of music
Max's lucky day is Tuesday
Lucky numbers 1 & 9 (another coincendence, his birthdate!)
"Max came with a gift of perseverence. He picked the right parents so he will always feel and know you love him. Because of Gage's tolerant and kind nature, he will always be there for Max to guide and support him"
ARIES He will always be affectionately demonstrative
WILLIAMS loquacious, affectionate, charming, open, and gentle
Max will always be attracted to people who offer peace and tranquility and will shy away from crowds and loud people.
He will always give what he can and whatever he does or gives is given with love
Max can inspire other people
He will be eager to explore and develop all of his talents and capabilities. Max has the character and resilience of a true survivor.
ARIES Music could become an important part of Max's life. He could show an interest, appreciation and talent in this area early in his life. He also possesses a high degree of artistic talent.
WILLIAMS individuals with WS can also tend to demonstrate a love of music
Max's lucky day is Tuesday
Lucky numbers 1 & 9 (another coincendence, his birthdate!)
"Max came with a gift of perseverence. He picked the right parents so he will always feel and know you love him. Because of Gage's tolerant and kind nature, he will always be there for Max to guide and support him"
Thursday, December 1, 2011
Coincidences
We have to believe it's in God's plan that Max was born with WS. We love that our child wants to hug us all the time and it's so warming to feel his embrace. We love that he's energetic and trys to make you laugh, to get a reaction from you. As we are learning the realities involved, seeing his unique qualities, our own skills blossom. Although his learning may be steady, he is aware of everything around him. Max definitly has the love and affinity for rhythm and music. For instance, he is very fond of bouncing whilst hitting his piano and just today, I was running the hoover and he was imating the sound of it!
We don't know what to expect and what lies ahead, we just have to take one day at a time, do the best we can, we are thankful we found out early so we can be proactive, and we are grateful to have the support from the therapists.
There are so many coincidences since we learned of WS, which tells us things do happen for a reason and the people we meet and who are in our lives, make us better people.
We don't know what to expect and what lies ahead, we just have to take one day at a time, do the best we can, we are thankful we found out early so we can be proactive, and we are grateful to have the support from the therapists.
There are so many coincidences since we learned of WS, which tells us things do happen for a reason and the people we meet and who are in our lives, make us better people.
Wednesday, November 30, 2011
I like...
There's not a lot Max doesn't like, besides being told "No" like most kids.
I thought it would be funny to share some of these, in no particular order - here's a snapshot of his personality;
Max likes...
OPENING DOORS
Likes the attention!
Teddy, our cat, and it's his favorite word.
To bounce,
Hugging,
Pulling his socks off,
Using his feet,
TURNING PAGES of books.
Twinkle twinkle little star,
Banging on his toy piano,
The telephone,
Mum's computer,
Taking things out and putting things in,
Being outside,
Green beans,
Figuring out how to escape beyond the fencing,
Taking food out of his mouth, looking at it, and putting it back in,
Dropping food from his highchair for Teddy,
His Animal farmhouse toy,
Sesame Street
& MUSIC
Elmo,
Yo Gabba Gabba,
Signing "more",
Hide and seek,
The shower,
Balloons,
Prune Juice,
Milk,
Watching us cook dinner,
Peaches,
Squeezing his brothers arm & hand,
Biting, ... at the moment,
and lastly, he loves to sleep!
I thought it would be funny to share some of these, in no particular order - here's a snapshot of his personality;
Max likes...
OPENING DOORS
Likes the attention!
Teddy, our cat, and it's his favorite word.
To bounce,
Hugging,
Pulling his socks off,
Using his feet,
TURNING PAGES of books.
Twinkle twinkle little star,
Banging on his toy piano,
The telephone,
Mum's computer,
Taking things out and putting things in,
Being outside,
Green beans,
Figuring out how to escape beyond the fencing,
Taking food out of his mouth, looking at it, and putting it back in,
Dropping food from his highchair for Teddy,
His Animal farmhouse toy,
Sesame Street
& MUSIC
Elmo,
Yo Gabba Gabba,
Signing "more",
Hide and seek,
The shower,
Balloons,
Prune Juice,
Milk,
Watching us cook dinner,
Peaches,
Squeezing his brothers arm & hand,
Biting, ... at the moment,
and lastly, he loves to sleep!
Tuesday, November 29, 2011
Milestones
Born April 19,2010
I had a pretty healthy pregnancy with Max, despite a kidney stone around the 31st week. I had eaten too much calcium and the build up caused the stone. I was 9 days over my due date and was scheduled to be induced. During labor, Max's heart rate was fluctuating up and down so I was rushed to have an Emergency C Section. It was a very scary experience but all was well. He weighed 6llbs 6oz, not quite full term they said, maybe around 36 weeks or so? he was very wrinkly and covered in thick vernix. The low birth weight was probably from the Williams. He had a moderate level of jaundice by the 4th day and was sent home with a belly blanket. He had no trouble feeding/nursing but suffered with a lot of reflux and very colicky. He slept like a log at night, I had him co-sleep with me for the first 6 months. Because of the reflux, he didn't like to be on his belly and lift his head too much, crawling came late too, around 12 months. Max was diagnosed with WS by the FISH test in July, (at 15 months) so we were proactive and contacted Early Intervention/Physical Therapy and Max is walking around today, at 18 months. That was our Goal!
A couple weeks old
3 months
6 months
9 months
1 Year!
16 months
18 months
The Beginning
Like yesterday, I will never forget the 3 month well visit to the pediatrician's office, with a head full of questions about our concerns with vaccinations. She examined Max top to bottom, ear to ear and eye to eye then she listened to his heart and told me she could hear a faint murmur. My concerns about vaccines dropped to the bottom of the my list. She reassured me that sometimes baby's are born with little holes, or have valve abnormalities in the heart and the murmur could be nothing to worry about. She referred us to Cardiology to get it checked out. This was the beginning of our Journey with Max and learning of Williams Syndrome.
Max was diagnosed with Williams in July of this year, when he was 15 months old. After follow-up at Cardiology, they did a local testing/ultrasound type exam and they told us it was a valve issue and to visit again in 6 months at Nemours where they could do a thorough echo exam. The results of his heart condition was mild and follow-up again in 6 months. Both me and my Husband were positively optimistic things were OK. The next Nemours echo visit, in May, I was by myself with Max and I was able to get him to go to sleep without them sedating him. They were able to get a good look and get accurate readings. Being I was 4 months pregnant, I was emotional as is, thinking positively everything was good and his heart condition still mild the Cardiologist told me what she suspected was a valve problem is an Supravalvular Aortic stenosis and the condition is connected to Williams Syndrome? To any mother who is told there is something wrong with their baby, your heart melts. She did her best to explain it and draw a picture, being new to the news, naturally, I was in denial and thought "it can be fixed and everything will be OK" Leaving the Hospital room that day, the sincere, heartfelt look and hug the Cardiologist gave me, I now know why she did...
Max was diagnosed with Williams in July of this year, when he was 15 months old. After follow-up at Cardiology, they did a local testing/ultrasound type exam and they told us it was a valve issue and to visit again in 6 months at Nemours where they could do a thorough echo exam. The results of his heart condition was mild and follow-up again in 6 months. Both me and my Husband were positively optimistic things were OK. The next Nemours echo visit, in May, I was by myself with Max and I was able to get him to go to sleep without them sedating him. They were able to get a good look and get accurate readings. Being I was 4 months pregnant, I was emotional as is, thinking positively everything was good and his heart condition still mild the Cardiologist told me what she suspected was a valve problem is an Supravalvular Aortic stenosis and the condition is connected to Williams Syndrome? To any mother who is told there is something wrong with their baby, your heart melts. She did her best to explain it and draw a picture, being new to the news, naturally, I was in denial and thought "it can be fixed and everything will be OK" Leaving the Hospital room that day, the sincere, heartfelt look and hug the Cardiologist gave me, I now know why she did...
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