Jan 31, 2010
Jan 30, 2010
No Hill Too High
This is one of the songs that I sing with Chloe....
It was so long ago But I remember when I was wishing on those stars, yeah And late late at night Sitting on my bed My mother said Sing that song that goes
No hill too high No road too long 'Cause we overcome
You build me up When I fall down Now we can fly, fly
Into the blue The beautiful sky We can renew The possible high
Then you came along And I'd been hurt before And I did not know what to trust And you took my hand And standing in the wings You taught me how to sing that song that goes
No hill too high No road too long 'Cause we overcome
You build me up When I fall down Now we can fly, fly
Into the blue The beautiful sky We can renew The possible high
So slowly, I know we Will climb the ladder so we Live with the bright stars and the moon
No hill too high No road too long 'Cause we overcome
You build me up When I fall down Now we can fly, fly
Into the blue The beautiful sky We can renew The possible high
Then you came along And I'd been hurt before And I did not know what to trust And you took my hand And standing in the wings You taught me how to sing that song that goes
No hill too high No road too long 'Cause we overcome
You build me up When I fall down Now we can fly, fly
Into the blue The beautiful sky We can renew The possible high
So slowly, I know we Will climb the ladder so we Live with the bright stars and the moon
Jan 29, 2010
Fun Toys for Special Needs Children
I've been looking around for some new games for Chloe. I think these are fantastic and am putting them on our wish list!
Etch a Sketch Freestyle:
It's Etch A Sketch with a twist! You can draw with the fun Freestyle controller, that doesn't require fine motor skills to operate. Create lines, loops, circles and curly-Qs! Like the original Etch A Sketch, you can shake to erase!Crazy Bubbles:
Build basic 3-D shapes to dip into soap solution and create amazing bubbles. Full color instructions make bubble-sculpting a breeze. Kids might need a little help, but they'll love it!
72 parts: 12 white nodes, 12 each of 3 lengths blue struts, 4 each of 3 lengths yellow struts and 4 each of 3 lengths red struts, and step-by-step color instructions packed in a convenient plastic jar. Intructions include a bubble recipe using ordinary dishwashing soap (not included).
Lumin Disk:
According to Junior's mom of Adaptations 4 Kidz, this is a perfect toy for children with limited mobility. It is extremely sensitive to sound and also responds to touch.
Glo Doodle:
Though it comes with a little pen to use on it you can also just use your fingers. Any marks glow. Junior doesn't have any fine motor skills but even him pressing his hand into it leaves a glowing hand print. You can set it for one of three colors.
Block Play - People With Differing Abilities:
Made of extra-tough vinyl, the dolls represent a variety of ages, ethnicities and genders…all with super-realistic details and adaptive equipment—from leg braces to a hearing aid.
Jan 28, 2010
What Defines Me Is My Determination
Today's guest post is written by a wonderfully inspirational young lady, Erin Breedlove. I am completely blown away by her blog, Empower People, Change Lives. I often joke that Austin will probably grow up to be a doctor because he has such an extensive medical background. As you will read Erin's dream is to do just that, I have no doubt that her drive and determination will take her all the way to the top.
Without further ado:
Without further ado:
As a college student with cerebral palsy, I find that there are certain words, often used to describe those with disabilities, that are derogatory in terms of the way that they describe people like me and unlike me, the ones that have worked so diligently to get to where they are today.
Handicapped implies that there is a figurative “cap” on the things that students with extra challenges can achieve and perform. The truth is, though, that there aren’t any limitations on anyone. The only limits that are set are the ones that you set for yourself. For instance, I will graduate from college as a music therapist and will obtain a board certification and a certification in neurologic music therapy. Upon graduation, I will hopefully attend Johns Hopkins University School of Medicine to obtain my MD in Physical Medicine and Rehabilitation so that I can assist others in achieving the maximum level of independence and the highest quality of life possible.
By default, I expend more energy by nine o’clock in the morning as someone without my challenges might by nine o’clock in the evening. Every day, my muscles are fighting with themselves. They all think that they have a job to do when only one muscle or limb of my body should be exerting energy. Because I am a college student and my classes are in different buildings, I need to have the energy to transport myself from building to building, which is heavily aided by the fact that both buildings that house my classes are adjacent to the dormitory building. Even before I think about transitioning from one building to the next, I must wake, get dressed, put on my shoes, makeup, and brush my hair and teeth. Nightly, my routine consists of relaxation, homework, preparing for the next day, dinner, and shower. Though it seems quite structured, I have learned which things work for me. For instance, Facebook and Twitter are things that I use to wind down during the day and to maintain energy levels. I find things that are easy and practical for me. I can access Twitter and Facebook on my Blackberry, so the issue of carrying the laptop when you’re waiting for class is just not a big issue. Blogging has also helped me, in recent days, to accommodate the fact that I do need social interaction while getting cognitive stimulations through the articles and thought-provoking stories that you always hear in association with the community of people with disabilities. Now, I will have an even greater impact on the way that people with disabilities and other injuries and conditions live and thrive throughout the course of their injuries and side effects. Handicapped? I think not!
Disabled implies that an individual is not “adequately able” to perform a given task. While the individual may not be able to complete the task in the same manner that individuals without impairments might be able, the task is, in fact, one that is completed. Therefore, full credit is deserved. For example, when hanging clothes on hangers, I lay the hanger on a flat surface to clip pants or hang shirts. Different process to get there. Same result.
The word disabled has many meanings to many people, but I have often been surprised by the fact that the Americans with Disabilities Act doesn’t have a section in which it is addressed as to which terminology is generally user-friendly and acceptable. You’ve all seen the “Campaign to End the R-Word” groups online, and personally, I believe disabled should be at the very top of this list as well. Because I’m disabled doesn’t mean that I have less entitlement to goods and services in the USA, so why should it even be used? My favorite alternative for the “r-word” has to be “developmentally progressing,” which implies that the individual isn’t quite where they need to be…just yet. They will get there. Where there’s a will, there’s a way. I am comforted by the fact that when I apply to medical school, they will not be permitted to turn me away because of my disability, and for those who have or work with younger children, you might encounter situations in which children are under the impression that they will be discriminated on the basis of their disability. It is vital that you ensure that they understand that in 2010, that should not and will not be the case. In college, the discrimination, if you will, rarely happens on our campus, but it did for the student who was told he couldn’t live in the dorms because of his challenges. At the college-level, you have so many classes with so many different people that no one remembers that you weren’t in the class taking the test with the rest of the class because you had extended testing time; I feel that public elementary, middle, and high schools should make a conscious effort at blending other students in with students who may have challenges, even beyond the basics of inclusion.
It doesn’t take a word to let your child know his or her challenges. It takes a day in his or her shoes for him or her to show you his or her challenges.
Jan 27, 2010
Hunter's Story
My name is Chrystal Wagner. I have a wonderful husband and two beautiful children. Hunter is 4 ½ years old and Caitlin is 2 years old. We have lived in Lehi, Utah for 4 years now. Now to our story-
We had tried for a year to get pregnant with our first. After much frustration we turned to the doctor to do some fertility testing. Meanwhile we decided to start the adoption process just in case. Everything showed up fine with me but my husband ended up having a problem that only needed surgery to fix. Within six months I was finally pregnant and we were elated. My pregnancy went well and I was very healthy. I went all the way to my due date before going into labor. This is where the story starts to take a turn. I was in labor for something like 36 hours all said and done. When my contractions got close together we went to the hospital. Unfortunately I was not progressing. They kept sending me home and telling me to try and relax. Finally the following evening my husband called and said he was bringing me to the hospital and that they better admit me. After about 15 hours of labor, I was only dialated to a 2 ½. I wasn’t progressing but my contractions were really bad (all back labor). To sum it all up, I should have had a C-Section. I ended up on an epideral all night and had problems with my blood pressure which in turn put my son in distress. He was finally born the next morning. The doctor used forceps to pull him into the birth canal, but then I delivered him the rest of the way. He was too big for me and I ended up with 4th degree tearing. Not a fun first time experience!! He weighed in at 7lbs. 13oz. and was 20 ¼ inches long. He had a full head of hair and was just beautiful. He had some minor breathing issues at first so they took him to the NICU. I was able to go and get him from the NICU hours later.
Hunter did fine all day other than having a really high pitched cry. We were definitely not ready for what was about to unfold. Later on in the day they took Hunter to get his first bath. My husband went with to take pictures. As they were bathing him my husband noticed that his eyes were jumping (nystagmus), and he became alarmed. He told the nurse that it didn’t look normal and before he knew it the NICU team was there taking my sweet baby away again. They did an ultrasound that night and found grey spots on his brain. They told us they weren’t sure, but that they thought it might be cancer. We were devastated. The next day they ran a CT Scan and found a Occipital Lobe Fracture (from the forceps). This had caused residual bleeding and they thought that the swelling could be why his eyes were jumping. Hunter was in the NICU for the next 5 days. Other than the fracture we thought everything was fine. Once we got him home we learned differently. We had him home a little over a week when he started displaying seizure-like episodes. We called the pediatrician and he said to bring him right down. The doctor was able to see what we were talking about and immediately sent us to the PICU. Hunter had an EEG ran and an MRI. The EEG came back normal and the MRI showed residual bleeding on the front of his brain (forehead). At this point they still thought it was all from the fracture. Hunter’s problems continued and after a 24 hour EEG and other tests we still didn’t have any answers. We decided to head to Utah and see someone at Primary Children’s Medical Center. We showed them video of Hunter’s episodes and they had no idea what it was. At 5 months old, Hunter was diagnosed with Laryngomalasia which he needed surgery for. About a month later we noticed Hunter not using his right arm. We got very worried and immediately called the neurologist. We traveled once again to Salt Lake City for another visit. Dr. Lloyd (our neurologist) consulted with Dr. Swaboda about all of Hunter’s symptoms. After putting everything together they came to a diagnosis. Hunter had Alternating Hemiplegia of Childhood. We were fortunate that Dr. Swaboda was the one consulted about our son because she is actually the expert and one of the only neurologists researching Alternating Hemiplegia of Childhood. Hunter was 8 months old when diagnosed. What a blessing to be diagnosed as early as he was!
16 months oldIt was such a relief to finally have a diagnosis. I now had a direction to go in to helping my son. AHC (Alternating Hemiplegia of Childhood) is a very rare disease (1 in 1 million) and the cause is unknown. There are less than 250 worldwide cases. There are a wide range of symptoms with this disease. Most of the kids with AHC display seizure-like episodes early on that seem to get better as they get older. They are all very sensitive to their environment, i.e. wind, water, cold temperatures, light, loud noises, unfamiliar people/places, and irregular eye movement or nystagmus. Later on the children start to display paralysis symptoms. The paralysis comes and goes and can be one side (meaning 1 arm and leg) or full body (bilateral). Most of the AHC children are very delayed and have speech problems. On the severe end some don’t ever walk or talk. There is also the chance of developing a seizure disorder as they get older.
They started Hunter on Topomax hoping to get the seizure-like episodes under control. We immediately started Early Intervention to help with his delay. He continued to work with therapist through EI until he turned 3 years old. Nine months ago we made the hard decision to finally get Hunter a g-tube. He gradually stopped eating and even fought his bottle. Since then, he has gained 8 pounds and is a lot stronger. We believe that this has had a great deal to do with his current progress. In the last 6 months, Hunter has started getting into and out of sitting by himself, pulling to kneeling, and on occasion he has pulled to standing. He is very active and we are hoping that he will eventually walk. He doesn’t talk (we believe this is something that has to do with the Topomax). He currently gets PT, OT, ST, and Special Needs Preschool all in-home.
Hunter is a happy little boy that brings joy to everyone he meets. He loves music and so we watch a lot of Barney, Wiggles, and High School Musical. He also loves sports, football being his absolute favorite. He is very delayed, but we love him just the same. I love his smile-it just lights up a room!! We get comments about his pretty blue eyes all the time.
3 Years OldSo our journey to this point hasn’t gone without its struggles. I just take it day by day, trying to give Hunter everything he needs. My advice to other parents dealing with any kind of diagnosis is to be an aggressive advocate for your child. Don’t let doctors tell you that they are “developmentally delayed” with no diagnosis. I believe that is cop out. Having a special needs child has changed my life. It has made me dig deep down to realize what is really important. Hunter is a HUGE blessing to us. We cherish everyday with him and love him for who he is. My advice for those needing support: reach out to other special needs parents (they always understand what you are going through to some degree). I have also followed a few blogs that always have inspirational things to help me. Above all l would mention that my faith in family and the support and love of others is what has got me to this point.
4 Years OldJan 26, 2010
Try This Tuesday: Ways To Live Beneath Your Means
Raising children is expensive. Raising special needs children is more expensive -- a lot more expensive. Here are a few ideas that might help lighten your burden, taken from the book, "Debt Proof Your Marriage," by Mary Hunt. I'm going to commit to a few of the ideas, hopefully you can find that some of these ideas will help you as well!
Shop With Cash. When you make a purchase with cash, you will find it harder to let go. Checks and plastic are stand-ins for money and that's the problem. It's too convenient. Statistically you will spend 30% less over time if you pay cash.
Toss the Catalogs. Mail-order catalogs are the greatest spending temptation known to man. Shred them, they make good packing material.
Get Free Checking. Have you looked at what you spend to access your own money? Many credit unions offer free checking with few, if any, conditions.
Buy Checks Direct. Don't buy checks from your bank, even if you have a free account. Go to checksinthemail or checksunlimited or look in the advertising slicks in the Sunday paper. You will find ads for check printing companies with specials for first-time orders.
Call Your Insurance Companies. Call your insurance companies and prod your agent to help you find discounts. Perhaps your youthful drivers qualify for good-grade discounts, or you may have moved to a new zip code or can get multi-line discounts. Let him/her know that you are shopping rates, then do it!
Play Games With Your Money. Here's one: don't spend coins. Period. If your bill is $4.-2, give the checker a $5. At the end of each day put all of your change in a jar or drawer. I have one client that pays for his complete Christmas this way.
Become Fee Phobic. Don't pay $1.50 at the ATM when you can walk two blocks to your own bank. Refuse to stay in a hotel that charges a $4 connectivity fee. Don't accept a credit card that has an annual fee. Before buying an airline ticket, inquire about hidden fees (some airlines charge up to $20 to issue paper tickets versus e-tickets). Beware everywhere of Gotcha Fees.
Bargain ISP's. Some people pay $24 or more per month for dial-up Internet Access. I thought the Internet was "free". Networld (a local ISP) charges $8.25 per month on an annual contract. Love AOL? Go to walmart.com and click on Internet Service and get it for $9.94 a month. netzero and juno offer ten hours of service per month free. Be sure and check for local access numbers to reduce access costs.
Secret Codes. Most online marchants provide a place during checkout to enter a promotional code. Type it in and your total amount is automatically adjusted. It might give you free shipping. Robert's Crafts is one that we use locally for 40-50% discounts on single item purchases. Go to currentcodes, coolsavings, dealhunting, etc to find the discount codes. Promotional codes are distributed by retailers to improve sales.
Know Your Bulks. Just because you buy at a warehouse, larger sizes are not always cheaper per serving. Know your unit costs. Check out the Dry Pack Canning for great quality and low prices.
Get Supermarket Savvy. Super markets are planned to grab you. They are the most impulsive place on earth. They try to get you to buy things that are not planned. Size of the aisles, music playing, smells from the bakery, and others are planned to entice you to buy. Your Defense: shop with cash. Carry only the amount you have decided ahead of time to spend. Shop with a list. If you see a bargain too good to pass up, come back later to get it.
Grocery Shop Less Often. If you shop every week, stretch it out to eight days. Next week make it nine. Before you know it you will be using what you have on hand and shopping every two weeks. Your bill might be a little higher, but not double.
Try Store Brands. Chain stores that have their own brand names do not have their own manufacturers. They pick quality that represents their store and put their label on the product. 80% of the cost of food in your supermarket goes for marketing and advertising. Store brands require less of that. Experiment and try different brands. Another hint: There are only five major turkey processing plants in the US. There are a gazillion brands. They are all from the same place. Go for the cheapest one you can find.
Match coupons with sales. If you can match manufacturer's coupons with sales, you maximize the savings. by themselves they are not worth much.
Buy Cheap Shampoo. All shampoo is 80-90% water. Store brands or salon brands only contain 9-19% detergent wiht just a few drops of fragrance and additives. Shampoo detergets: ammonium lauryl sulfate - very harsh; ammonium laureth sulfate - harsh; sodium lauryl sulfate (sls) - still harsh; sodium laureth sulfate (sles) - mild, great choice; TEA lauryl sulfate - gentle, good choice; TEA laureth sulfate - gentle, also a good choice. Buy the cheapest one you can find. Baby shampoo is great for babies, but is way too gentle for adult hair.
Stock Up When It's Cheap. most major grocery chains work on a twelve-week cycle. That means that most things go on sale every twelve weeks. Wait for the sale and buy enough o carry you over. The grocery store is the alst place you want to get caught paying full price.
Find the Library. Libraries lend more than books. Look for videos, DVD's, even character cake pans! Check with your library, and even if they don't have the cake pans, suggest them. Stop buying books that you only read once. But please, no overdue fees.
Liquidate. Look the your stuff. I mean the attic, basement, cupboards, closets, and garage. You've got a lot of stuff. Perhaps now would be a good time to turn some of that stuff into cash. If it is not grandma's vintage sterling silver, get rid of it. sell it through local classifieds, garage sales, or internet auction.
Buy Used, Late Model, Domestic. There is nothing as expensive as a new car. The cheapest way to own a car is to buy a late model, used, domestic car with cash. Don't dismiss the thought so quickly. You can do this. You start with the best clunker you can pay cash for. Then start making payments to yourself of say $200 per month. Soon you will be able to see your clunker, probably for nearly what you paid for it and put that with what you have paid to yourself adn buya better car. Keep paying yoruself until you can afford an even better car. When you have gotten up the point you have enough to buy a new car for say $25,000 that will be worth $20,000 when you drive it off of the lot, you won't want the new car. You will see the value in paying cash for a late model, used, domestic car.
Empty the Trunk & Fill the Tires. The heavier your car, the harder your engine has to work. Give up making your trunk a mini storage unit. All you should have in there is a spare tire and some safety equipment. You will fill up less often. When you do fill up, check the tires and keep the air at the optimum psi rating. These two tactics will improve your mileage by about 10%.
Stop Shopping. Do you find yourself wandering around malls and bargain centers looking for bargains? Stop doing that! When you need something, find what you need and buy it. Then leave. That is called "planned spending" and is light-years from shopping till you drop.
Free Fitness. Most people who sign up for fitness centers spend $20-30 per montha nd often do not use the privileges. If you do, God Bless you. If you cannot afford that, or choose not to spend the money, don't worry. ou have an ideal fitness opportunity for free. It's called your legs and the great outdoors. Start walking!
Expect Satisfaction. When something does not fit, doesn't operate, doesn't stay together, don't throw it away. Take it back! Expect to be a satisfied customer.
Do It Yourself. It is easy to call a housekeeping service or agree to pay more for installation. But come on. If you can do some of those thigns yourself, or learn how, you should. Just think of the savings and the fact you will know it is done right.
Learn to Cut Hair. Anyone with a little patience and willingness to learn can perform hair trims to increase the time between professional cuts and can also learn to cut kids' hair. For an investment of about $25 you can save up to 50% of your annual till for a savings of $500 or more per year.
Turn Down/Up the Thermostat Two Degrees. In the winter, lower your thermostat by just two degrees and in the summer increase it by two degrees. Experts tell us this will reduce your costs by 5-10% annually.
Shop With Cash. When you make a purchase with cash, you will find it harder to let go. Checks and plastic are stand-ins for money and that's the problem. It's too convenient. Statistically you will spend 30% less over time if you pay cash.
Toss the Catalogs. Mail-order catalogs are the greatest spending temptation known to man. Shred them, they make good packing material.
Get Free Checking. Have you looked at what you spend to access your own money? Many credit unions offer free checking with few, if any, conditions.
Buy Checks Direct. Don't buy checks from your bank, even if you have a free account. Go to checksinthemail or checksunlimited or look in the advertising slicks in the Sunday paper. You will find ads for check printing companies with specials for first-time orders.
Call Your Insurance Companies. Call your insurance companies and prod your agent to help you find discounts. Perhaps your youthful drivers qualify for good-grade discounts, or you may have moved to a new zip code or can get multi-line discounts. Let him/her know that you are shopping rates, then do it!
Play Games With Your Money. Here's one: don't spend coins. Period. If your bill is $4.-2, give the checker a $5. At the end of each day put all of your change in a jar or drawer. I have one client that pays for his complete Christmas this way.
Become Fee Phobic. Don't pay $1.50 at the ATM when you can walk two blocks to your own bank. Refuse to stay in a hotel that charges a $4 connectivity fee. Don't accept a credit card that has an annual fee. Before buying an airline ticket, inquire about hidden fees (some airlines charge up to $20 to issue paper tickets versus e-tickets). Beware everywhere of Gotcha Fees.
Bargain ISP's. Some people pay $24 or more per month for dial-up Internet Access. I thought the Internet was "free". Networld (a local ISP) charges $8.25 per month on an annual contract. Love AOL? Go to walmart.com and click on Internet Service and get it for $9.94 a month. netzero and juno offer ten hours of service per month free. Be sure and check for local access numbers to reduce access costs.
Secret Codes. Most online marchants provide a place during checkout to enter a promotional code. Type it in and your total amount is automatically adjusted. It might give you free shipping. Robert's Crafts is one that we use locally for 40-50% discounts on single item purchases. Go to currentcodes, coolsavings, dealhunting, etc to find the discount codes. Promotional codes are distributed by retailers to improve sales.
Know Your Bulks. Just because you buy at a warehouse, larger sizes are not always cheaper per serving. Know your unit costs. Check out the Dry Pack Canning for great quality and low prices.
Get Supermarket Savvy. Super markets are planned to grab you. They are the most impulsive place on earth. They try to get you to buy things that are not planned. Size of the aisles, music playing, smells from the bakery, and others are planned to entice you to buy. Your Defense: shop with cash. Carry only the amount you have decided ahead of time to spend. Shop with a list. If you see a bargain too good to pass up, come back later to get it.
Grocery Shop Less Often. If you shop every week, stretch it out to eight days. Next week make it nine. Before you know it you will be using what you have on hand and shopping every two weeks. Your bill might be a little higher, but not double.
Try Store Brands. Chain stores that have their own brand names do not have their own manufacturers. They pick quality that represents their store and put their label on the product. 80% of the cost of food in your supermarket goes for marketing and advertising. Store brands require less of that. Experiment and try different brands. Another hint: There are only five major turkey processing plants in the US. There are a gazillion brands. They are all from the same place. Go for the cheapest one you can find.
Match coupons with sales. If you can match manufacturer's coupons with sales, you maximize the savings. by themselves they are not worth much.
Buy Cheap Shampoo. All shampoo is 80-90% water. Store brands or salon brands only contain 9-19% detergent wiht just a few drops of fragrance and additives. Shampoo detergets: ammonium lauryl sulfate - very harsh; ammonium laureth sulfate - harsh; sodium lauryl sulfate (sls) - still harsh; sodium laureth sulfate (sles) - mild, great choice; TEA lauryl sulfate - gentle, good choice; TEA laureth sulfate - gentle, also a good choice. Buy the cheapest one you can find. Baby shampoo is great for babies, but is way too gentle for adult hair.
Stock Up When It's Cheap. most major grocery chains work on a twelve-week cycle. That means that most things go on sale every twelve weeks. Wait for the sale and buy enough o carry you over. The grocery store is the alst place you want to get caught paying full price.
Find the Library. Libraries lend more than books. Look for videos, DVD's, even character cake pans! Check with your library, and even if they don't have the cake pans, suggest them. Stop buying books that you only read once. But please, no overdue fees.
Liquidate. Look the your stuff. I mean the attic, basement, cupboards, closets, and garage. You've got a lot of stuff. Perhaps now would be a good time to turn some of that stuff into cash. If it is not grandma's vintage sterling silver, get rid of it. sell it through local classifieds, garage sales, or internet auction.
Buy Used, Late Model, Domestic. There is nothing as expensive as a new car. The cheapest way to own a car is to buy a late model, used, domestic car with cash. Don't dismiss the thought so quickly. You can do this. You start with the best clunker you can pay cash for. Then start making payments to yourself of say $200 per month. Soon you will be able to see your clunker, probably for nearly what you paid for it and put that with what you have paid to yourself adn buya better car. Keep paying yoruself until you can afford an even better car. When you have gotten up the point you have enough to buy a new car for say $25,000 that will be worth $20,000 when you drive it off of the lot, you won't want the new car. You will see the value in paying cash for a late model, used, domestic car.
Empty the Trunk & Fill the Tires. The heavier your car, the harder your engine has to work. Give up making your trunk a mini storage unit. All you should have in there is a spare tire and some safety equipment. You will fill up less often. When you do fill up, check the tires and keep the air at the optimum psi rating. These two tactics will improve your mileage by about 10%.
Stop Shopping. Do you find yourself wandering around malls and bargain centers looking for bargains? Stop doing that! When you need something, find what you need and buy it. Then leave. That is called "planned spending" and is light-years from shopping till you drop.
Free Fitness. Most people who sign up for fitness centers spend $20-30 per montha nd often do not use the privileges. If you do, God Bless you. If you cannot afford that, or choose not to spend the money, don't worry. ou have an ideal fitness opportunity for free. It's called your legs and the great outdoors. Start walking!
Expect Satisfaction. When something does not fit, doesn't operate, doesn't stay together, don't throw it away. Take it back! Expect to be a satisfied customer.
Do It Yourself. It is easy to call a housekeeping service or agree to pay more for installation. But come on. If you can do some of those thigns yourself, or learn how, you should. Just think of the savings and the fact you will know it is done right.
Learn to Cut Hair. Anyone with a little patience and willingness to learn can perform hair trims to increase the time between professional cuts and can also learn to cut kids' hair. For an investment of about $25 you can save up to 50% of your annual till for a savings of $500 or more per year.
Turn Down/Up the Thermostat Two Degrees. In the winter, lower your thermostat by just two degrees and in the summer increase it by two degrees. Experts tell us this will reduce your costs by 5-10% annually.
Jan 25, 2010
Make Your Day Monday: Ice Princess
an article by Karen Lambert of The Standard Examiner.
When Karina Dyches skated at "Winter Wonderland on Ice," her mother, coach and many in the audience cried. Then the crowds gave her a standing ovation.
The 7-year-old with cerebral palsy had wanted to learn to ice skate since attending the Christmas show at the George S. Eccles Ice Center three years ago. But since she uses a walker, her mother felt she couldn't join the Learn-to-Skate classes offered to other kids.
Kenna Dyches looked online for information about a Special Olympics program for her daughter, but the program no longer existed.
After watching the Christmas show last year, Karina again expressed a desire to skate. This time, her mom e-mailed the skating school director and learned a coach would provide private lessons. Kenna has faithfully driven her daughter to lesson after lesson.
At her first lessonw ith coach Becca Anderson, Karina stood on the ice with her walker, her skates slipped and she failed to propel herself forward.
"Becca had to push me that day," Karina remembers.
Then at the end of the class, Anderson picked her up, left the walker behind and carried her quickly around the rink.
"She just let her head back and her mouth was just open and it was like it was the best day of her life," Anderson said. "It was so sweet."
At that first elsson just two months ago, Karina learned she could perform at the Christmas program she'd attended every year. Kenna said her daughter looked ecstatic.
Anderson said her biggest concern was whether she could understand Karina because the girl's speech is affected by her disorder. So, Anderson called her own mom, a special education teacher, who suggested Anderson focus on using a few words over and over. Anderson also had Karina wear a helmet to protect against falls, another concern.
The first several weeks Karina couldn't even move on the ice.
Then her dad came to one of her practices.
"She just took off," Anderson said.
Ever since then, Karina has been pushing her walker while skating around ont he ice.
"She has a lot of fun and works very hard and when she's done she's very tired," Keene said.
Anderson said she eventually learned to understand most things Larina said. Just a few weeks ago, the 7-year-old seemed ready to begin skating without a helmet. In addition, Anderson noticed Karina had learned to stand more upright with her walker and has a little better fine motor control.
Before long, it was time for the Christmas performance where 32 adults and children performed. karina said she was excited but nervous. When it was her turn, her coach came out ont he edge of the ice so her student could see her.
It was to be a duet - not because Karina had difficulty learning the part, Anderson said, but because her disability limited how high she could lift her legs, and a partner mirrored and accented her performance.
At the performance, her mom, dad, three brothers and baby sister sat in the audience to support her, along with grandparents and two aunts and their families.
Then the 7-year-old skated with her walker and award-winning skater Sydney Longhurst, eliciting tears and a standing ovation.
"That was the loudest anyone cheered," said her 5-year-old brother, Trevor. "They were like, 'That was the best one ever' because it was really loud. It hurt my ears."
Dianne Liebes, an employee at the Eccles Ice Center, said she was touched - partly because she has a niece who was born years ago with cerebral palsy, when fewer services were available.
"I've never seen such a happy little girl (as Karina) and her coach is wonderful with her," Liebes said. "Friday night she was in her glory."
Kenna credits her daughter's can-do attitude.
"She knows she has challenges and things are harder for her than for other people," said Karina's mom, "but she just believes in herself and does things. She didn't see the other skaters, and say, 'I wish I could do that.' She just believes she can."
When Karina Dyches skated at "Winter Wonderland on Ice," her mother, coach and many in the audience cried. Then the crowds gave her a standing ovation.
The 7-year-old with cerebral palsy had wanted to learn to ice skate since attending the Christmas show at the George S. Eccles Ice Center three years ago. But since she uses a walker, her mother felt she couldn't join the Learn-to-Skate classes offered to other kids.
Kenna Dyches looked online for information about a Special Olympics program for her daughter, but the program no longer existed.
After watching the Christmas show last year, Karina again expressed a desire to skate. This time, her mom e-mailed the skating school director and learned a coach would provide private lessons. Kenna has faithfully driven her daughter to lesson after lesson.
At her first lessonw ith coach Becca Anderson, Karina stood on the ice with her walker, her skates slipped and she failed to propel herself forward.
"Becca had to push me that day," Karina remembers.
Then at the end of the class, Anderson picked her up, left the walker behind and carried her quickly around the rink.
"She just let her head back and her mouth was just open and it was like it was the best day of her life," Anderson said. "It was so sweet."
At that first elsson just two months ago, Karina learned she could perform at the Christmas program she'd attended every year. Kenna said her daughter looked ecstatic.
Anderson said her biggest concern was whether she could understand Karina because the girl's speech is affected by her disorder. So, Anderson called her own mom, a special education teacher, who suggested Anderson focus on using a few words over and over. Anderson also had Karina wear a helmet to protect against falls, another concern.
The first several weeks Karina couldn't even move on the ice.
Then her dad came to one of her practices.
"She just took off," Anderson said.
Ever since then, Karina has been pushing her walker while skating around ont he ice.
"She has a lot of fun and works very hard and when she's done she's very tired," Keene said.
Anderson said she eventually learned to understand most things Larina said. Just a few weeks ago, the 7-year-old seemed ready to begin skating without a helmet. In addition, Anderson noticed Karina had learned to stand more upright with her walker and has a little better fine motor control.
Before long, it was time for the Christmas performance where 32 adults and children performed. karina said she was excited but nervous. When it was her turn, her coach came out ont he edge of the ice so her student could see her.
It was to be a duet - not because Karina had difficulty learning the part, Anderson said, but because her disability limited how high she could lift her legs, and a partner mirrored and accented her performance.
At the performance, her mom, dad, three brothers and baby sister sat in the audience to support her, along with grandparents and two aunts and their families.
Then the 7-year-old skated with her walker and award-winning skater Sydney Longhurst, eliciting tears and a standing ovation.
"That was the loudest anyone cheered," said her 5-year-old brother, Trevor. "They were like, 'That was the best one ever' because it was really loud. It hurt my ears."
Dianne Liebes, an employee at the Eccles Ice Center, said she was touched - partly because she has a niece who was born years ago with cerebral palsy, when fewer services were available.
"I've never seen such a happy little girl (as Karina) and her coach is wonderful with her," Liebes said. "Friday night she was in her glory."
Kenna credits her daughter's can-do attitude.
"She knows she has challenges and things are harder for her than for other people," said Karina's mom, "but she just believes in herself and does things. She didn't see the other skaters, and say, 'I wish I could do that.' She just believes she can."
Jan 24, 2010
Where Does My Help Come From?
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
Psalm 121:1-4
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
Psalm 121:1-4
Jan 23, 2010
Lift Me Up
A beautiful song and performance by Christina Aguilera for Hope For Haiti Now.
So the pain begins / as the music fades / and I’m left here with /with more than I can take -- if you lift me up / just get me through this night / i know i’ll rest tomorrow / and i’ll be strong enough to try -- when the sky clears / and all is said and done / i will realize /that we all need someone -- if you lift me up / just get me through this night / i know i’llrest tomorrow / and I’ll be strong enough to try -- so when you see me crashing / and there’s nowhere left to fall / will you lift me even higher / to rise above this all /if you lift me up / said if you lift me up /said if you lift me up / will it be higher / when you see me crashing / and theres nowhere left to fall / will you lift me even higher / to rise above this all /if you lift me up / said if you lift me up / if you lift me up /just get me through this night.
So the pain begins / as the music fades / and I’m left here with /with more than I can take -- if you lift me up / just get me through this night / i know i’ll rest tomorrow / and i’ll be strong enough to try -- when the sky clears / and all is said and done / i will realize /that we all need someone -- if you lift me up / just get me through this night / i know i’llrest tomorrow / and I’ll be strong enough to try -- so when you see me crashing / and there’s nowhere left to fall / will you lift me even higher / to rise above this all /if you lift me up / said if you lift me up /said if you lift me up / will it be higher / when you see me crashing / and theres nowhere left to fall / will you lift me even higher / to rise above this all /if you lift me up / said if you lift me up / if you lift me up /just get me through this night.
Jan 22, 2010
Velcro Catch Ball
I love this idea from Make & Takes/Craftzine. It looks fun and affordable, and I think it is perfect for children of all abilities! I'm definitely going to do this with Chloe! Here are the details....
What you'll need:
Winter knit gloves and/or hat (the cheap kind)
Velcro with sticky back circles are best
Plastic round balls ping pong balls or Wiffle balls
Directions:
Place velcro stickers onto each plastic ball. You'll only be using the hard "hook" half of the velcro (we'll have to come up with another use for the fuzzy, soft half). Try to place them evenly. I used 6 circular velcro stickers on each ball; I wanted to make sure my daughter could catch it, so the more velcro the better.
Now it's time to play catch. Only use one glove at a time. One pair of gloves will be enough for 2 people to play catch. One gloved hand can catch the velcro ball and one bare hand can pull it off and throw it back.
Jan 21, 2010
Perspective
Perspective really is quite amazing!
We've been doing HBOT with Emma and she has finished 8 "dives" already of the 40 total planned. For each dive, it requires us to drive 1 hour 45 min. in the car to the place, 1 hour in the chamber, feeding, diapering, etc. before we get back into the car and drive another 1 hr. 45 min. home. This has caused our already long days to seem longer.
Today and tomorrow we do not have a dive. Emma is participating in her normal therapy schedule this week before we take a two week break from her regular schedule to complete 20 HBOT dives. That means we went to the hospital for PT and AV therapy this morning and she'll have OT tonight resulting in sort-of free time from 11am - 4pm! It's amazing to me how much time it seems I've just gained to my day without traveling to/from HBOT treatments and it's really just what we would normally do on a typical Wednesday.
Before I thought Wed. was one of the hardest mornings of the week - getting the girls up, Julia to school and Emma to AV by 9am takes quite a bit of effort! But today I flew threw the day and feel like I now have some time to spare. Not much has changed except for my perspective on time. And that led me to think about how my perspective has changed on other things.
Like children. Before we had children we had an idea of what it would be like to be parents and how we would handle a variety of situations that I saw other parents in with some less than cooperative children. Ummmmm......hello???? Really? Our expert parenting ideas changed drastically once we actually had a child of our own. I think this is typical for most parents, so I'm not going to add much to this.
Like deafness. When we first found out Emma was deaf we were heartbroken. But, as time went on and everything unfolded I now think that deafness isn't so bad at all on the spectrum of things that can challenge your child and that if Emma was only deaf how easy things would be. When I talk with other parents with children who are deaf without other issues I know how hard they think they have it, but I just think that it sounds so easy. Of course I also talk with parents whose children are much more involved than Emma and I'm sure they think we have it easy. Again, perspective.
Like cerebral palsy. This is a hard one for me to articulate how my perspective has changed. The most striking change has been in my attitude. I do not take any movement, sound or milestone for granted. I celebrate each and every one and pray each and every day for total healing for Emma so that life can be easier.
Like support. Everything seems so much easier when you have support from others. They say it takes a village to raise a child, so just imagine what it takes to raise a child with special needs. Unless you are raising one I really don't think that you can fully understand what it is like, how little free time there really is available in a day.
Like doctors. I used to think they were experts on what is going on, but now know that they know some things really well but that most often what is going on doesn't fall into a nice neat little category. So, they are make educated guesses on what is possible, what will work, and how to do things. The good ones are up front about it and really listen to you. I found out it's best to do your own homework, do your own research, and go in asking pertinent questions instead of looking for someone to guide you through the process. When I was in grad school the first thing they taught us was when the professor was talking, they were presenting their version of events and you should really question what they are leaving out instead of what they are including. After all, class has a start and end time and can only cover so much and what is covered is what the professor thinks is important but you are missing out on the big picture if you don't do your own research and come prepared to ask questions. This is a valuable lesson and one that carries over into the medical community!
I could say a lot more on this matter, but for now I'm done and I'm going to go make good use of the time I have before Emma wakes up and we go pick Julia up for school.
We've been doing HBOT with Emma and she has finished 8 "dives" already of the 40 total planned. For each dive, it requires us to drive 1 hour 45 min. in the car to the place, 1 hour in the chamber, feeding, diapering, etc. before we get back into the car and drive another 1 hr. 45 min. home. This has caused our already long days to seem longer.
Today and tomorrow we do not have a dive. Emma is participating in her normal therapy schedule this week before we take a two week break from her regular schedule to complete 20 HBOT dives. That means we went to the hospital for PT and AV therapy this morning and she'll have OT tonight resulting in sort-of free time from 11am - 4pm! It's amazing to me how much time it seems I've just gained to my day without traveling to/from HBOT treatments and it's really just what we would normally do on a typical Wednesday.
Before I thought Wed. was one of the hardest mornings of the week - getting the girls up, Julia to school and Emma to AV by 9am takes quite a bit of effort! But today I flew threw the day and feel like I now have some time to spare. Not much has changed except for my perspective on time. And that led me to think about how my perspective has changed on other things.
Like children. Before we had children we had an idea of what it would be like to be parents and how we would handle a variety of situations that I saw other parents in with some less than cooperative children. Ummmmm......hello???? Really? Our expert parenting ideas changed drastically once we actually had a child of our own. I think this is typical for most parents, so I'm not going to add much to this.
Like deafness. When we first found out Emma was deaf we were heartbroken. But, as time went on and everything unfolded I now think that deafness isn't so bad at all on the spectrum of things that can challenge your child and that if Emma was only deaf how easy things would be. When I talk with other parents with children who are deaf without other issues I know how hard they think they have it, but I just think that it sounds so easy. Of course I also talk with parents whose children are much more involved than Emma and I'm sure they think we have it easy. Again, perspective.
Like cerebral palsy. This is a hard one for me to articulate how my perspective has changed. The most striking change has been in my attitude. I do not take any movement, sound or milestone for granted. I celebrate each and every one and pray each and every day for total healing for Emma so that life can be easier.
Like support. Everything seems so much easier when you have support from others. They say it takes a village to raise a child, so just imagine what it takes to raise a child with special needs. Unless you are raising one I really don't think that you can fully understand what it is like, how little free time there really is available in a day.
Like doctors. I used to think they were experts on what is going on, but now know that they know some things really well but that most often what is going on doesn't fall into a nice neat little category. So, they are make educated guesses on what is possible, what will work, and how to do things. The good ones are up front about it and really listen to you. I found out it's best to do your own homework, do your own research, and go in asking pertinent questions instead of looking for someone to guide you through the process. When I was in grad school the first thing they taught us was when the professor was talking, they were presenting their version of events and you should really question what they are leaving out instead of what they are including. After all, class has a start and end time and can only cover so much and what is covered is what the professor thinks is important but you are missing out on the big picture if you don't do your own research and come prepared to ask questions. This is a valuable lesson and one that carries over into the medical community!
I could say a lot more on this matter, but for now I'm done and I'm going to go make good use of the time I have before Emma wakes up and we go pick Julia up for school.
Jan 20, 2010
Unexpected Lessons
a beautiful story about a beautiful girl named Oia Lee by her mother, Mo.
Better grab a coffee...
Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee (pronounced E-ah). When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.
Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.
Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.
I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”
My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.
I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.
As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?
Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:
“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.
Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.
The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.
That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.
Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.
And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.
The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.
So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.
Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.
Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!
Flash forward now a little over a year...early November 2009. We went for our scheduled 6 month check up with Oia's neurologist which brought a change to Oia's cause of Cerebral Palsy. Here is how that appointment unfolded:
I'll start by saying that Dr. T was so impressed to see Oia moving as well as she was and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.
Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.
That was not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, that news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe that was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.
To date, she is acting more and more like a 'typical' 2 year old; with some opinion and sass yet so loving and patient. She is our greatest gift in more ways than I care to count. She is perfect just the way she is and continues to show us through her eyes what it's like to really live with joy in our hearts. Thanks for following our story.
Better grab a coffee...
Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee (pronounced E-ah). When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.
Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.
Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.
I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”
My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.
I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.
As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?
Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:
“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.
Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.
The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.
That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.
Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.
And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.
The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.
So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.
Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.
Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!
Flash forward now a little over a year...early November 2009. We went for our scheduled 6 month check up with Oia's neurologist which brought a change to Oia's cause of Cerebral Palsy. Here is how that appointment unfolded:
I'll start by saying that Dr. T was so impressed to see Oia moving as well as she was and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.
Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.
That was not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, that news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe that was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.
To date, she is acting more and more like a 'typical' 2 year old; with some opinion and sass yet so loving and patient. She is our greatest gift in more ways than I care to count. She is perfect just the way she is and continues to show us through her eyes what it's like to really live with joy in our hearts. Thanks for following our story.
Jan 19, 2010
Special Needs Marriage
A few thoughts on special needs marriage.
From April:
From Beth:
We all have a plan for ourselves. For our life.
When there is a kink in the plan, it stinks.
But, that's life. It's unpredictable.
I know this, you know this. Anyone who doesn't... is a turd.
Here's the deal, though, when a kink, a sizable kink, happens to you, it's hard to swallow. It's tough to accept, even when the rational side of your brains says, "Simmer down, kinks are to be expected."
Kinks change you. Even when you don't want them to. Even when you fought your hardest to not let them weild their poisin.
In the aftermath of Betsy's diagnosis/prognosis, I went through the normal sadness. Then I dusted it off, and went into proactive mode. In hindsight, I think I only got my stuff together for her and anything concerning her. I really let everything else go down the crapper.
After almost 5 years, I thought I was okay. I was in a place of acceptance and positivity. And, in a lot of ways I still am. If it was just Betsy and me, it would be a cakewalk. The problem is that there is more to consider. 3 other kids. A husband. A family. Somewhere along the line, I haven't considered them enough.
Jake and I are bickering over the stupidest things, the kids are always yelling at each other, the boys are fighting more than usual. The energy in our home is gray, and I'm really trying to keep it from fading into black. I mean, I certainly wouldn't want to be around us right now, so, I can't expect other people to want to.
I wake up every morning and tell myself that today is the day to turn it around. To right the wrongs, to repair the damage. But, 2-3 hours into the day, and it all goes amuck.
I don't want you all to think it's all Nanny 9-1-1 around here or anything, but it's not far off. I'm using my maternal radar and have spotted a small blip on the screen and want to take it out before it becomes a massive bleep. I would really like to avoid Supernanny, at all costs.
I love my family.
Seeing that sentence, it just doesn't seem like enough. I would sacrifice myself for my children and their happiness. I am crazy about my husband, he is truly my soulmate. So, what happened? How did we become a group of people that just live together and, occasionally, feel like a family? We may smile as we walk past each other, make friendly bantar, we still eat dinner together nightly, and sometimes, in brief moments find ourselves just being. Together. As it should be, and as it used to be all the time. But, it's NOT like it used to be. At least, not as often as it should be.
I am to blame. I firmly believe that the mother is the glue of the family. "When momma ain't happy, ain't no one happy" is the most truthful little tidbit around. Remember that.
I know that we will overcome. We are strong like that. Grebes Rule! Everyone has rough patches. I never thought I'd encounter one like this at 31, but then, there's that whole kink thing, ya know?
I have the utmost admiration for families who have been through worse and made it; trauma, terminal spousal or childhood illness, or, heaven help them, loss of a child or spouse. I now know why divorce rate is so high among families who encounter major kinks. In our own situation with having a child with special needs, the divorce rate is twice as high. With it already being 41% for first marriages in the US (that is staggering), I refuse, REFUSE, to be included in the 82% failure rate for couples like Jake and I. NOT an option.
Incidentally, this post was VERY difficult for me to write (through clydesdale sized tears), but therapeutic, and much needed. I hope it dispells any and all thoughts by anyone who thinks that things are always peachy-keen around here, or that I PRETEND that they are perfect. Either way you slice, things are not.
Despite all of it, I am very pleased with all that God has graciously given me. I am blessed over and over in ways too numerous to count. And, my situational sadness aside, I am generally content. Does that make sense? I am happy with who my children are, and happy that, even in difficulty, I have Jake to lean on. I am happy to have the parents and sister that I have, and grateful for the in-laws that I have, too.
I just need a little work. And, with all the support I can muster, from my family, from you, and mostly, from God, I will be reinstated to who I was before. Before I let the kink change me. I am amazed that even now, people look to me for advice and solice. It is encouraging and helpful to have that. To know that I am not a complete wash up. That I still have sense AND sensibility.
I have to always remember that God's plans transcends any we have for ourselves.
From Kristina:
Chris and I talked about this but we don't really see that having a child with special needs really puts that much extra stress on the marriage. We think going from 1 to 2 children has its own stress!
When pushed, we think that adding in the extra cost of a special needs child (in our case, lower income since I'm now at home and the added expense of non-insurance covered out of pocket medical expenses) is the most challenging. When money is tight, stress can be around the corner. Also, we have sometimes disagreed on how to handle some situations and make ourselves talk it out and not take any action until we both can agree on a path forward.
We also have both taken up getting more active - Chris by running and me by starting Spinning classes - to help burn off stress and get some time away from home. We also take advantage of any opportunity to have a date night and try and make sure that happens at least 2x/month. I think it's both of these things that have helped us minimized the impact of raising two children, one with special needs and one without. So far, it's really worked!
From Tara:
I believe ALL marriages have peaks and valleys. I believe special needs marriages have steeper mountains and deeper pit falls. I believe when a special needs couple was blessed with their child, they were also blessed with a life that was out of the ordinary. I believe having a special needs child forces us as a couple to dig to a deeper place within ourselves - remember who we are as individuals and as a couple. We have been forced to strengthen ourselves just to make it up the next steep hill. It is hard, it is fun, it is a bit of an extreme sport really. But just as I wouldn't trade Chloe for anything in the world, I also wouldn't trade the opportunity to grow within myself and grow as a couple with my amazing companion through this crazy ride. Our marriage has special needs, and making sure those needs are met is our call. We can't change it or wish it away. We have to get creative, be more patient, be more kind, remember why we fell in love, and enjoy those beautiful peaks when they come our way!
Please share your thoughts as well!
From April:
Having a child with challenges can create many tender times in a marriage. The following are just a few simple ways that my husband and I try to stay connected in the midst of our busy day to day lives coupled with times of medical uncertainty:
* Between work, church responsibilities and medical appointments, my husband and I often find that our time together is limited. However, an unexpected blessing from our late night hours with Caleb is that we are usually able to end our day with some quiet time together. No matter how late my husband gets home, I'm usually still up with Caleb and we have an hour to reconnect before we go to bed. The lack of sleep is worth that little window of time together.
* Because we are quite home bound with our special needs son, our friends have often brought "date night" to us! They'll pick up food at a restaurant and bring it over to our home so that we can have a date night with friends, without having to leave the house!
* When I have a day of hospital appointments with Caleb, sometimes my husband is able to take time off of work to come along. I love these times because we have a chance to visit in the car, figure out how to best meet Caleb's needs, and have a "date" in the hospital cafeteria.
* When we find a moment to pray together our hearts are "knit together in unity and love" as we try to best meet the needs of our family. Heavenly Father truly blesses us in tender ways when we ask him for his help and guidance.
* Being parents to a child with challenges can be tender. We live lives that most couples will never really understand. Between Hospital visits, follow up appointments, therapy, insurance battles, it can be hard to find time just to be a "couple." It's easy to get bogged down with questions, equipment, and worry. I know that when we try to find a few moments every day to re connect with each other and with Heavenly Father, we will feel more unified in love as we continually strive to strengthen marriage and family!From Beth:
We all have a plan for ourselves. For our life.
When there is a kink in the plan, it stinks.
But, that's life. It's unpredictable.
I know this, you know this. Anyone who doesn't... is a turd.
Here's the deal, though, when a kink, a sizable kink, happens to you, it's hard to swallow. It's tough to accept, even when the rational side of your brains says, "Simmer down, kinks are to be expected."
Kinks change you. Even when you don't want them to. Even when you fought your hardest to not let them weild their poisin.
In the aftermath of Betsy's diagnosis/prognosis, I went through the normal sadness. Then I dusted it off, and went into proactive mode. In hindsight, I think I only got my stuff together for her and anything concerning her. I really let everything else go down the crapper.
After almost 5 years, I thought I was okay. I was in a place of acceptance and positivity. And, in a lot of ways I still am. If it was just Betsy and me, it would be a cakewalk. The problem is that there is more to consider. 3 other kids. A husband. A family. Somewhere along the line, I haven't considered them enough.
Jake and I are bickering over the stupidest things, the kids are always yelling at each other, the boys are fighting more than usual. The energy in our home is gray, and I'm really trying to keep it from fading into black. I mean, I certainly wouldn't want to be around us right now, so, I can't expect other people to want to.
I wake up every morning and tell myself that today is the day to turn it around. To right the wrongs, to repair the damage. But, 2-3 hours into the day, and it all goes amuck.
I don't want you all to think it's all Nanny 9-1-1 around here or anything, but it's not far off. I'm using my maternal radar and have spotted a small blip on the screen and want to take it out before it becomes a massive bleep. I would really like to avoid Supernanny, at all costs.
I love my family.
Seeing that sentence, it just doesn't seem like enough. I would sacrifice myself for my children and their happiness. I am crazy about my husband, he is truly my soulmate. So, what happened? How did we become a group of people that just live together and, occasionally, feel like a family? We may smile as we walk past each other, make friendly bantar, we still eat dinner together nightly, and sometimes, in brief moments find ourselves just being. Together. As it should be, and as it used to be all the time. But, it's NOT like it used to be. At least, not as often as it should be.
I am to blame. I firmly believe that the mother is the glue of the family. "When momma ain't happy, ain't no one happy" is the most truthful little tidbit around. Remember that.
I know that we will overcome. We are strong like that. Grebes Rule! Everyone has rough patches. I never thought I'd encounter one like this at 31, but then, there's that whole kink thing, ya know?
I have the utmost admiration for families who have been through worse and made it; trauma, terminal spousal or childhood illness, or, heaven help them, loss of a child or spouse. I now know why divorce rate is so high among families who encounter major kinks. In our own situation with having a child with special needs, the divorce rate is twice as high. With it already being 41% for first marriages in the US (that is staggering), I refuse, REFUSE, to be included in the 82% failure rate for couples like Jake and I. NOT an option.
Incidentally, this post was VERY difficult for me to write (through clydesdale sized tears), but therapeutic, and much needed. I hope it dispells any and all thoughts by anyone who thinks that things are always peachy-keen around here, or that I PRETEND that they are perfect. Either way you slice, things are not.
Despite all of it, I am very pleased with all that God has graciously given me. I am blessed over and over in ways too numerous to count. And, my situational sadness aside, I am generally content. Does that make sense? I am happy with who my children are, and happy that, even in difficulty, I have Jake to lean on. I am happy to have the parents and sister that I have, and grateful for the in-laws that I have, too.
I just need a little work. And, with all the support I can muster, from my family, from you, and mostly, from God, I will be reinstated to who I was before. Before I let the kink change me. I am amazed that even now, people look to me for advice and solice. It is encouraging and helpful to have that. To know that I am not a complete wash up. That I still have sense AND sensibility.
I have to always remember that God's plans transcends any we have for ourselves.
From Kristina:
Chris and I talked about this but we don't really see that having a child with special needs really puts that much extra stress on the marriage. We think going from 1 to 2 children has its own stress!
When pushed, we think that adding in the extra cost of a special needs child (in our case, lower income since I'm now at home and the added expense of non-insurance covered out of pocket medical expenses) is the most challenging. When money is tight, stress can be around the corner. Also, we have sometimes disagreed on how to handle some situations and make ourselves talk it out and not take any action until we both can agree on a path forward.
We also have both taken up getting more active - Chris by running and me by starting Spinning classes - to help burn off stress and get some time away from home. We also take advantage of any opportunity to have a date night and try and make sure that happens at least 2x/month. I think it's both of these things that have helped us minimized the impact of raising two children, one with special needs and one without. So far, it's really worked!
From Tara:
I believe ALL marriages have peaks and valleys. I believe special needs marriages have steeper mountains and deeper pit falls. I believe when a special needs couple was blessed with their child, they were also blessed with a life that was out of the ordinary. I believe having a special needs child forces us as a couple to dig to a deeper place within ourselves - remember who we are as individuals and as a couple. We have been forced to strengthen ourselves just to make it up the next steep hill. It is hard, it is fun, it is a bit of an extreme sport really. But just as I wouldn't trade Chloe for anything in the world, I also wouldn't trade the opportunity to grow within myself and grow as a couple with my amazing companion through this crazy ride. Our marriage has special needs, and making sure those needs are met is our call. We can't change it or wish it away. We have to get creative, be more patient, be more kind, remember why we fell in love, and enjoy those beautiful peaks when they come our way!
Please share your thoughts as well!
Jan 18, 2010
Make Your Day Monday: Do What You CAN Do
For the past two years, 24-year-old Elsha Stockseth of South Weber, Utah, has used her tech-savvy talents to design and sell holiday cards to her friends and family.
All the proceeds from her sales are then donated to support a cause Elsha feels passionately about: clean water in Africa. While many of Elsha's peers share this passion, very few have gone to the lengths Elsha has gone to in creating each card. Below, Elsha tells her story....
I am writing to you about a project I did this year and last year to raise money for the African Well Fund (via Africare).
I am 24 years old but only weigh 34 pounds because I have muscular dystrophy. When I was in high school I was able to paint and draw, but in the past few years my arms quit working. My family was able to find a head mouse for me, which is a device that looks like a digital camera that hooks to the top of my notebook computer screen and picks up signal from a reflective dot that I wear on my forehead. I have been able to do my artwork using this device and the Photoshop software.
For the past two years I have designed Christmas cards and sold them to friends and family. Part of the proceeds I collect have been sent to the African Well Fund so I can help people who are less fortunate than me. I believe water is essential in sustaining life and everyone should have access to clean useable water.
I hope my small efforts will aid those who don't have water close by, in obtaining renewable sources of water to make their lives better.
Last year I sold about 1,000 cards and was able to contribute $105 to the African Well Fund. This year I did a little better and sold about 1,600 cards and will be contributing about $450 to the fund. When the printer who is making my cards this year found out about the purpose of my project, he helped by contributing to the cost of the cards and I was able to contribute more money.
— Elsha Stockseth
"The Biggest Little U2 Fan in the World"
From Africare helps Africa.
You can find more about Elsha's inspiring charity by visiting her web site.
Jan 17, 2010
I Asked God
I asked God to take away my pain.
God said, No.
It is not for me to take away,
but for you to give it up.
I asked God to make my handicapped child whole.
God said, No.
Her spirit is whole,
her body was only temporary.
I asked God to grant me patience.
God said, No.
Patience is a by-product of tribulations;
it isn't granted, it is earned.
I asked God to give me happiness.
God said, No.
I give you blessings;
Happiness is up to you.
I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares
and brings you closer to me.
I asked God to make my spirit grow.
God said, No.
You must grow on your own,
but I will prune you to make you fruitful.
I asked for all things that I might enjoy life.
God said, No.
I will give you life so that
you may enjoy all things.
I asked God to help me LOVE others,
as much as he loves me.
God said... Ahhhh,
finally you have the idea.
Author Unknown
Jan 15, 2010
Painting All By Myself
A friend had sent me an article about helping your child find a way to independently do artwork no matter what their disability. Some kids use their feet and some hold a brush in their mouth. Well it suddenly hit me that Junior uses his head switch for toys and his computer so why not use his head for painting(one of those duh, why did I not think of this years ago moments). I put a couple holes in a length of elastic and some velcro on the ends then we put it around Junior's head. The hard part was the brush itself, it needed to be long enough so Junior was not getting his face in the paint. We ended up taking the insides out of a marker then sticking a paint brush into one end a a length of flexible plastic tubing into the other.
Junior was turning his head to either side to move the brush, I was not helping. He also would stop and holler for me to get him a new color. I was so excited watching him(yes the tears were rolling), especially when I gave him a new color and he moved the brush to the other side of the paper to use it.
Junior loves doing art projects but for the most part they are all hand over hand. He doesn't mind that and still has a blast. Today though he was more proud than I have ever seen him of something he has made. When he was all finished he just sat and looked at it and would then bust out in a grin.
Jan 14, 2010
Click to Help End SMA
Between January 15th and January 22nd, Chase Community Giving is allowing supporters to determine which charity will be given $1 million to support their cause.
PLEASE submit your vote this week by going HERE. If you would like more information or more ideas on how you can help, please go to Gwendolyn's blog HERE.
We are asking you to support the Gwendolyn Strong Foundation. Any money donated to that foundation will go to finding the cure to end SMA, Spinal Muscular Atrophy. Although there is currently no cure, research is getting close to finding treatment.
- SMA -- Spinal Muscular Atrophy -- KILLS more young children than ANY other inherited disease -- 50% die by their 1st birthday, 90% by their 2nd.
- 1 in 40 people UNKNOWINGLY carries the SMA gene -- few have any known family history.
- SMA is degenerative and terminal. Although born healthy, babies eventually lose the ability to walk, sit, eat, breathe, and even swallow. The mind is NEVER impacted and children with SMA are bright and social.
- There is currently NO treatment and NO cure, but there is HOPE!
- The National Institutes of Health (NIH) coined SMA as the disease "CLOSEST to TREATMENT".
- Researchers say a CURE is possible in a few years -- IF given adequate funding.
- SMA is considered a "model" disease and many scientist believe it is a "gateway" to answers for countless other diseases, including: ALS/Lou Gehrig's, spinal cord injury, Alzheimer's, Parkinson's, the muscular dystrophies, and even some forms of cancer.
- Find out more about SMA by watching this video.
PLEASE submit your vote this week by going HERE. If you would like more information or more ideas on how you can help, please go to Gwendolyn's blog HERE.
Jan 13, 2010
Meet Noah
by Annissa of My Unique Flowers and A Page in My Book.
I found out the news, which we waited to hear for 5 years, that I was pregnant on July 6th 2001. I was so excited, worried, scared and in shock!! But that baby could not have been more loved, and more wanted, from that day on. We fought for that baby, and we were going to do everything we could to keep it!
We had the routine AFP test done in the end of September. I had done it with our first son, and it had come back normal, I expected nothing less from it this time. Also, figuring that if it came back with something wrong, they would call before my appointment.?
I went in for my routine appointment - and got the shocking news. The AFP test had come back with a DOUBLE positive! A 1:165 chance for Downs Syndrome and a 1:98 chance for Spina Bifida - how it could come back with both, I don't know, but it did. We decided to have an amino done to find out for sure what was wrong.... and get the side benefit of finding out if it was a boy or a girl.
We went in for it on October 16th, and ended up not getting it because my Doctor was doing an emergency c-section. So, we ended up having it on the 19th.?? We went in on the 30th, the day before Halloween, to find out the results. I was scared, but yet I wasn't. I knew everything was going to be fine, no matter what. We got in there, and he told us the baby didn't have Downs or SB, but something called Mosaic Trisomy 16. I didn't expect it, but in a way, it didn't really shock me either. Then he said "Oh, and by the way, it's a boy!".... I came home and started doing some homework - and was scared when I found nothing on it. And then I found the DOC16 site, and my salvation in knowledge!!
It was an interesting pregnancy - with lots of little things going on. The baby's fluid was low, and the placenta small and obviously not doing it's job because the baby was very small for it's gestational age. If it wasn't for the support of my family, friends, doctor and Karen - I don't know how I would have made it through all the unknowns. Even though we were asked, there was no way we would "terminate" our pregnancy with our miracle baby. We heard his heartbeat for the first time when he was 6 1/2 weeks - he was so beautiful on the ultrasounds - and he even waved and smiled at us on the ultrasounds. And everytime he kicked, it was a reminder, "Hey, I'm here! I'm ok!!"
On January 28th I went in for a NST (non-stress test) and my blood pressure was up. I was having contractions, and the baby had a heart deceleration. I was told to take it very easy and to come back the following morning for another one. So, on the 29th, I dropped my son, Calahan, off at school and then headed to the DRs. I thought it would be the same as the day before - my 1/2 hour to hour appointment taking another 3 hours. I never expected what happened... my blood pressure was very high, and our baby had A LOT of heart decelerations. My DR sent me straight to the hospital after giving me the first shot to help mature the baby's lungs. I was very scared, but hoping to go home.
But I never did. I spent the rest of the week in the hospital, on the fetal monitor 24 hours a day, getting my blood pressure checked very often, and watching the baby's heartbeat drop again and again. I had developed Pre-eclampsia quickly, the baby was having more heart decelerations, and there were a lot of other little red flags going up - stressing it was time to get him out, before something happened. The last straw was the amino done on the 31st of January, when the fluid had come out a pale yellow, instead of clear.?
The morning of February 1st, my Doctor told me that he was no longer giving me the choice of staying or going to the high risk hospital 2 hours away, with the much better NICU - I was going. I wouldn't deliver that day - they would probably do more tests, including another amino.??
I arrived in Marshfield sometime before noon. Whisked away into Labor and Delivery, and then set up on the monitor, given an ultrasound and they took blood. Then the team of Doctors came in, and told us. "We are going to deliver you TODAY!"
Noah Alexander was born at 3:45pm on February 1st, 2002. He came in weighing 1 lb 12.2 oz and was 13 3/4 inches long.
My pregnancy had ended at 33 weeks, he was 7 weeks early. We didn't even know he was out - they didn't even let him attempt to cry. And we didn't see him until hours later. But everyone came in, telling us how beautiful he was. All I wanted, was to hear him cry!
Noah spent 6 1/2 weeks in the NICU in Marshfield, WI. Mom spent that amount of time at the Ronald McDonald House. I can't praise both enough. Even though we had good and bad days, hard and easy ones, it ended up turning into home away from home.?
Noah started breathing on his own at 36 hours old, and I heard him cry that day. He had/has minor problems - but no one knows if they are because of the MT16 or if they are because he was a preemie. He has a heart murmur, 2 holes in his upper chambers, and 1 in the lower. He has an umbilical and groin hernia. He had an enlarged right Kidney. He has a condition called a hypospadious - where the urethra is on the underside of his penis and not the tip. He also has a "natural circumcision." He had a little excess fluid on his brain, but nothing that was causing damage and we were later told that it was a "variation of normal." His eyesight is really good, except that his left pupil is egg shaped (currently) instead of round. We were told this would probably fix itself in time. His hearing is questionable, he passed on the right, but not on the left. We are still, currently going through testing on that. Most of the times I would only hear the DR tell me, for report in the morning, "Well, we're just waiting for him to grow!" They did testing on his placenta, and blood after he was born. The placenta contained 100% MT16, and the blood contained 0%. We are still waiting on his skin graph.
Despite all those little things, he is so beautiful and wonderful, and I thank God everyday for my perfect little baby! He came home on March 18th, the day after his St. Patrick's Day due date. He came home weighing 3 lbs 10 oz. He ended up back in the NICU for 5 days due to a cold. But we are back home now, and he is doing wonderfully!! He's growing everyday, thankfully, and he's being closely watched. Currently (4-4-02) he is 4 lbs 6 oz. And just barely fitting into preemie clothes. I have high hopes for his future, and him.
Update November 2003
It's been about a year and a half since Noah's story left off. He's now 21 months, 17lbs 8oz and just shy of 30 inches. He's had trouble gaining/maintaining weight. But regardless, he keeps moving up in diaper and clothes sizes so something must be happening!
Medically he's doing amazingly well. He still has his heart murmur, although sometimes faint or hard to catch, he's being re-checked in a little over a year. His cardiologist was giving him until he was 3 for it to close up, and if not we may have to discuss surgery. His umbilical hernia he had healed on it's own. The groin hernia he had repaired in July of 2002, and he not only had it on one side, but both sides. He healed wonderfully from that. His Hypospadious was repaired in March of 2003, which also went well, and he healed fine from with no complications. He has an extra little dimple at the top of his behind, and they've seemed to always be concerned about that. First they had mentioned a form of Spina Bifida, and then ruled that out, and the newest thing was they thought the end of the spinal cord was wrapped around his pelvis in some way.
Neurologically he's still having some issues. He still seems to have some problems that were present at birth, but nothing really that they are concerned about. Except they believed, since the back of his head is flat, and he was born like that, that he may have had some premature fusing of the sutures in his skull. So he had to go through MRIs, CT scans and Ultrasounds. So they checked his skull and his spine with those, and found out his spine is fine. His skull is starting to fuse together in the front (forehead area) but not the back. They don't seem to be overly concerned about this, but want to keep a close eye on him. Hearing we still aren't sure on, but we know he hears fine, and he's talking so we assume there isn't anything wrong. He did have a lot of fluid build up, and small ear canals until recently and that may have something to do with the numerous failed tests he had. He only had one he passed, and he was put out completely for that one. Now his ears have cleared up and he hasn't gotten an ear infection for 6 months (he was getting them every other month and was on the verge of tubes), so we'll see when he goes back for yet another hearing test. We did get his skin graph back, from the MT16 testing, and it had 3 out of 30 cells with the extra 3ed chromosome. Not that anyone knows what this means, but it is what it is. The amino was 3 out of 10 cells it was present in, I believe. The placenta was 100% MT16 and the Cord Blood was 0.
Now beyond the medical things, he's a smart spunky little boy with an attitude to boot, despite his small size! He's just begun to walk 4 weeks ago, and he's got a vocabulary of around 30 words! He finally got 4 teeth since July and is finally starting to eat better. We had problems in the eating area, and continue to, but they aren't as bad. (Gagging Reflex mostly) He has been getting physical therapy for a little over a year now and started Speech Therapy early this year, and thrives in both. His Physical Therapist calls him the highlight of her week! Everyone is so amazed by this little boy who is so endearing and precious, that not many in the medical community would have thought would be was advanced and wonderfully healthy (not to mention alive) as he is! I can just look at him, still, and be amazed to tears by him! It started out as a scary journey, but has been a blessing of a miracle who has touched many people. Things might not be easy at times, and hurdles maybe high, but in the end - it was ALL worth it!
Update January 2005
Noah is now almost 3 years old (in only 2 weeks) and is doing very very well! He is about 23 lbs and 34 inches at 35 months. He has gone through a lot this past year, even though it has been a relatively quite year. He's had a lot of testing done due to the neurological questions (still basically the same questions as before), and his vomiting issues. He vomits during the day if the taste or texture of a food doesn't agree with him, or if he starts crying very hard around the time of his eating, which we basically associate with his oral sensitivity issues. The time we can't seem to figure out, that he's going through the testing for, is when he wakes up 2 hours after he falls asleep and vomits. After he gets it out - and everything is cleaned up - he falls right back to sleep. We've recently discovered - the past few weeks - that Noah usually has an asthma attack after the vomiting, so he is back on the nebulizer treatments. It use to happen a few times a week, and now happens maybe twice a month. Testing hasn't revealed anything concrete at this point in time. Hearing - he still has issues, although he is now passing tests. They are thinking he's got some hearing loss on his left side, specifically 2 tones, one high and one low - not really in the range of everyday life.
He is walking, running, trying to jump - and coming very close to an actual jump, he goes up and down stairs, he cannot open doors but he's almost there…he's even done summersaults on a few occasions. He's a normal, typical 2 year old. He's been in Physical Therapy for over 2 1/2 years, Speech Therapy for 2 years, and Occupational Therapy for about 7 months or so. He's doing so well in all of them, he may not qualify for Early Special Needs Education, which is wonderful news - but we want him to get all the help he can. His speech is our main concern at the moment. When he talks, it's still pretty mumbled - words blended into one another, or just plain baby gibberish. Mom and Dad, and people who deal with him on an overall frequent basis can understand him 75% of the time, otherwise you need an interpreter. He will be starting Headstart in the fall of 2005 if he gets in Early Education or not around his third birthday.
Overall he is doing so amazingly well!! He's healthy, he's happy, he's an INTELLIGENT little boy!! His big word of the last few months is Dinosaur! He also says his pleases and thank you, and he has a very very large vocabulary! He'll let you know if he is bored and wants to do something else! He loves his toys (Little People mostly) and his friend (Blues Clues, Elmo, Dora & Boots, Pooh Bear, Scooby Doo, and several others!) His newest obsession is Spider Man, or Peter Parker as he says! He loves reading with Mommy, and playing games on the computer! He likes to color and play outside on his big swing set! He loves to do it all! If his size is any sort of hindrance, he asks for help! He's determined to find a way to do what his 9 year old brother is doing! He is stubborn and temperamental - but if he wasn't, he wouldn't be doing so well - so we cannot fault him for it. Almost 3 years after his birth, and he is still as big of a miracle as he was the day he was born, and before!
April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure.
Read more about Noah and his amazing journey here.
I found out the news, which we waited to hear for 5 years, that I was pregnant on July 6th 2001. I was so excited, worried, scared and in shock!! But that baby could not have been more loved, and more wanted, from that day on. We fought for that baby, and we were going to do everything we could to keep it!
We had the routine AFP test done in the end of September. I had done it with our first son, and it had come back normal, I expected nothing less from it this time. Also, figuring that if it came back with something wrong, they would call before my appointment.?
I went in for my routine appointment - and got the shocking news. The AFP test had come back with a DOUBLE positive! A 1:165 chance for Downs Syndrome and a 1:98 chance for Spina Bifida - how it could come back with both, I don't know, but it did. We decided to have an amino done to find out for sure what was wrong.... and get the side benefit of finding out if it was a boy or a girl.
We went in for it on October 16th, and ended up not getting it because my Doctor was doing an emergency c-section. So, we ended up having it on the 19th.?? We went in on the 30th, the day before Halloween, to find out the results. I was scared, but yet I wasn't. I knew everything was going to be fine, no matter what. We got in there, and he told us the baby didn't have Downs or SB, but something called Mosaic Trisomy 16. I didn't expect it, but in a way, it didn't really shock me either. Then he said "Oh, and by the way, it's a boy!".... I came home and started doing some homework - and was scared when I found nothing on it. And then I found the DOC16 site, and my salvation in knowledge!!
It was an interesting pregnancy - with lots of little things going on. The baby's fluid was low, and the placenta small and obviously not doing it's job because the baby was very small for it's gestational age. If it wasn't for the support of my family, friends, doctor and Karen - I don't know how I would have made it through all the unknowns. Even though we were asked, there was no way we would "terminate" our pregnancy with our miracle baby. We heard his heartbeat for the first time when he was 6 1/2 weeks - he was so beautiful on the ultrasounds - and he even waved and smiled at us on the ultrasounds. And everytime he kicked, it was a reminder, "Hey, I'm here! I'm ok!!"
On January 28th I went in for a NST (non-stress test) and my blood pressure was up. I was having contractions, and the baby had a heart deceleration. I was told to take it very easy and to come back the following morning for another one. So, on the 29th, I dropped my son, Calahan, off at school and then headed to the DRs. I thought it would be the same as the day before - my 1/2 hour to hour appointment taking another 3 hours. I never expected what happened... my blood pressure was very high, and our baby had A LOT of heart decelerations. My DR sent me straight to the hospital after giving me the first shot to help mature the baby's lungs. I was very scared, but hoping to go home.
But I never did. I spent the rest of the week in the hospital, on the fetal monitor 24 hours a day, getting my blood pressure checked very often, and watching the baby's heartbeat drop again and again. I had developed Pre-eclampsia quickly, the baby was having more heart decelerations, and there were a lot of other little red flags going up - stressing it was time to get him out, before something happened. The last straw was the amino done on the 31st of January, when the fluid had come out a pale yellow, instead of clear.?
The morning of February 1st, my Doctor told me that he was no longer giving me the choice of staying or going to the high risk hospital 2 hours away, with the much better NICU - I was going. I wouldn't deliver that day - they would probably do more tests, including another amino.??
I arrived in Marshfield sometime before noon. Whisked away into Labor and Delivery, and then set up on the monitor, given an ultrasound and they took blood. Then the team of Doctors came in, and told us. "We are going to deliver you TODAY!"
Noah Alexander was born at 3:45pm on February 1st, 2002. He came in weighing 1 lb 12.2 oz and was 13 3/4 inches long.
My pregnancy had ended at 33 weeks, he was 7 weeks early. We didn't even know he was out - they didn't even let him attempt to cry. And we didn't see him until hours later. But everyone came in, telling us how beautiful he was. All I wanted, was to hear him cry!
Noah spent 6 1/2 weeks in the NICU in Marshfield, WI. Mom spent that amount of time at the Ronald McDonald House. I can't praise both enough. Even though we had good and bad days, hard and easy ones, it ended up turning into home away from home.?
Noah started breathing on his own at 36 hours old, and I heard him cry that day. He had/has minor problems - but no one knows if they are because of the MT16 or if they are because he was a preemie. He has a heart murmur, 2 holes in his upper chambers, and 1 in the lower. He has an umbilical and groin hernia. He had an enlarged right Kidney. He has a condition called a hypospadious - where the urethra is on the underside of his penis and not the tip. He also has a "natural circumcision." He had a little excess fluid on his brain, but nothing that was causing damage and we were later told that it was a "variation of normal." His eyesight is really good, except that his left pupil is egg shaped (currently) instead of round. We were told this would probably fix itself in time. His hearing is questionable, he passed on the right, but not on the left. We are still, currently going through testing on that. Most of the times I would only hear the DR tell me, for report in the morning, "Well, we're just waiting for him to grow!" They did testing on his placenta, and blood after he was born. The placenta contained 100% MT16, and the blood contained 0%. We are still waiting on his skin graph.
Despite all those little things, he is so beautiful and wonderful, and I thank God everyday for my perfect little baby! He came home on March 18th, the day after his St. Patrick's Day due date. He came home weighing 3 lbs 10 oz. He ended up back in the NICU for 5 days due to a cold. But we are back home now, and he is doing wonderfully!! He's growing everyday, thankfully, and he's being closely watched. Currently (4-4-02) he is 4 lbs 6 oz. And just barely fitting into preemie clothes. I have high hopes for his future, and him.
Update November 2003
It's been about a year and a half since Noah's story left off. He's now 21 months, 17lbs 8oz and just shy of 30 inches. He's had trouble gaining/maintaining weight. But regardless, he keeps moving up in diaper and clothes sizes so something must be happening!
Medically he's doing amazingly well. He still has his heart murmur, although sometimes faint or hard to catch, he's being re-checked in a little over a year. His cardiologist was giving him until he was 3 for it to close up, and if not we may have to discuss surgery. His umbilical hernia he had healed on it's own. The groin hernia he had repaired in July of 2002, and he not only had it on one side, but both sides. He healed wonderfully from that. His Hypospadious was repaired in March of 2003, which also went well, and he healed fine from with no complications. He has an extra little dimple at the top of his behind, and they've seemed to always be concerned about that. First they had mentioned a form of Spina Bifida, and then ruled that out, and the newest thing was they thought the end of the spinal cord was wrapped around his pelvis in some way.
Neurologically he's still having some issues. He still seems to have some problems that were present at birth, but nothing really that they are concerned about. Except they believed, since the back of his head is flat, and he was born like that, that he may have had some premature fusing of the sutures in his skull. So he had to go through MRIs, CT scans and Ultrasounds. So they checked his skull and his spine with those, and found out his spine is fine. His skull is starting to fuse together in the front (forehead area) but not the back. They don't seem to be overly concerned about this, but want to keep a close eye on him. Hearing we still aren't sure on, but we know he hears fine, and he's talking so we assume there isn't anything wrong. He did have a lot of fluid build up, and small ear canals until recently and that may have something to do with the numerous failed tests he had. He only had one he passed, and he was put out completely for that one. Now his ears have cleared up and he hasn't gotten an ear infection for 6 months (he was getting them every other month and was on the verge of tubes), so we'll see when he goes back for yet another hearing test. We did get his skin graph back, from the MT16 testing, and it had 3 out of 30 cells with the extra 3ed chromosome. Not that anyone knows what this means, but it is what it is. The amino was 3 out of 10 cells it was present in, I believe. The placenta was 100% MT16 and the Cord Blood was 0.
Now beyond the medical things, he's a smart spunky little boy with an attitude to boot, despite his small size! He's just begun to walk 4 weeks ago, and he's got a vocabulary of around 30 words! He finally got 4 teeth since July and is finally starting to eat better. We had problems in the eating area, and continue to, but they aren't as bad. (Gagging Reflex mostly) He has been getting physical therapy for a little over a year now and started Speech Therapy early this year, and thrives in both. His Physical Therapist calls him the highlight of her week! Everyone is so amazed by this little boy who is so endearing and precious, that not many in the medical community would have thought would be was advanced and wonderfully healthy (not to mention alive) as he is! I can just look at him, still, and be amazed to tears by him! It started out as a scary journey, but has been a blessing of a miracle who has touched many people. Things might not be easy at times, and hurdles maybe high, but in the end - it was ALL worth it!
Update January 2005
Noah is now almost 3 years old (in only 2 weeks) and is doing very very well! He is about 23 lbs and 34 inches at 35 months. He has gone through a lot this past year, even though it has been a relatively quite year. He's had a lot of testing done due to the neurological questions (still basically the same questions as before), and his vomiting issues. He vomits during the day if the taste or texture of a food doesn't agree with him, or if he starts crying very hard around the time of his eating, which we basically associate with his oral sensitivity issues. The time we can't seem to figure out, that he's going through the testing for, is when he wakes up 2 hours after he falls asleep and vomits. After he gets it out - and everything is cleaned up - he falls right back to sleep. We've recently discovered - the past few weeks - that Noah usually has an asthma attack after the vomiting, so he is back on the nebulizer treatments. It use to happen a few times a week, and now happens maybe twice a month. Testing hasn't revealed anything concrete at this point in time. Hearing - he still has issues, although he is now passing tests. They are thinking he's got some hearing loss on his left side, specifically 2 tones, one high and one low - not really in the range of everyday life.
He is walking, running, trying to jump - and coming very close to an actual jump, he goes up and down stairs, he cannot open doors but he's almost there…he's even done summersaults on a few occasions. He's a normal, typical 2 year old. He's been in Physical Therapy for over 2 1/2 years, Speech Therapy for 2 years, and Occupational Therapy for about 7 months or so. He's doing so well in all of them, he may not qualify for Early Special Needs Education, which is wonderful news - but we want him to get all the help he can. His speech is our main concern at the moment. When he talks, it's still pretty mumbled - words blended into one another, or just plain baby gibberish. Mom and Dad, and people who deal with him on an overall frequent basis can understand him 75% of the time, otherwise you need an interpreter. He will be starting Headstart in the fall of 2005 if he gets in Early Education or not around his third birthday.
Overall he is doing so amazingly well!! He's healthy, he's happy, he's an INTELLIGENT little boy!! His big word of the last few months is Dinosaur! He also says his pleases and thank you, and he has a very very large vocabulary! He'll let you know if he is bored and wants to do something else! He loves his toys (Little People mostly) and his friend (Blues Clues, Elmo, Dora & Boots, Pooh Bear, Scooby Doo, and several others!) His newest obsession is Spider Man, or Peter Parker as he says! He loves reading with Mommy, and playing games on the computer! He likes to color and play outside on his big swing set! He loves to do it all! If his size is any sort of hindrance, he asks for help! He's determined to find a way to do what his 9 year old brother is doing! He is stubborn and temperamental - but if he wasn't, he wouldn't be doing so well - so we cannot fault him for it. Almost 3 years after his birth, and he is still as big of a miracle as he was the day he was born, and before!
April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure.
Read more about Noah and his amazing journey here.
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