So Noel and I went for our pre- appointment consultation yesterday before we start our intensive treatment in a few weeks. Im so happy to see how far Noel has come, her school and teachers are really making the difference in her life. Noel knows how to drink out of a cup now with some help and also self feed hand over hand. At the feeding clinic we are going to work on chewing, textures and self feeding, I know the two weeks we will be there will be a lot of hard work for Noel but she can do it and we will get thru it one day at a time and hopefully be able to eat more balanced meals.
It is an oldie but a goodie and one that every parent with a special needs child should read and take to heart.
Welcome to Holland by Emily Perk Kingsley published 1987
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Cleanlogic Bath and Body Care sent me several different soaps to try and I must admit, it was love at first sight. Cleanlogic’s Soap and Sponge combo is an awesome concept with the soap and sponge built right together no more dirty wash cloths hanging in the shower for days and less bacteria. I was nervous at first about getting it wet because like other products I have tried they seem to disintegrate quickly, Cleanlogics soap comes wrapped in plastic inside its own protective case to keep it clean and guarded.
I have to say this is the best soap Ive ever used my skin feels clean, nourished and healthy. The Cleanlogic soap sponge is gentle enough to use directly on your skin and rough enough to exfoliate dead skin cells away with each use. Its made of natural ingredients and extracts to give you a sensory experience. The scents are Cucumber Melon, Lavender and Peach Berry I have to say that the Cucumber Melon is my favorite.
Cleanlogic also has another mission besides making your skin feel and look great, they have created the Inspiration Foundation an non-profit organization supporting individuals with disabilities, the goal is to empower and enable disabled individuals to live their lives to the fullest.
On every soap, body wash and lotion is braille ” because there are great people who can read it.” I was so happy to see braille on a product that is used everyday, we definitely need more brands that are willing to support the blind and disabled community because they are people too.
To find out more about Cleanlogic check out there website here
Psychologists use DSM codes to diagnose conditions. In the revised DSM-5, dyslexia no longer has a diagnostic code of its own.
The latest revision, which now omits the term dyslexia, is a significant step backward. This omission will:
• perpetuate the lack of recognition and understanding of dyslexia
• contribute to delays in diagnosis and treatment
Concerned? Sign the petitionhttp://www.ipetitions.com/petition/include-dyslexia-in-dsm-5/
Retinopathy of prematurity (ROP), is a possibly blinding disorder of the eyes that targets premature babies. Typically, babies whom are born before the 31 week mark of gestation, and weigh around 2 and ¾ pounds, are affected. If the baby is born even more premature, they have a larger chance of developing ROP. ROP commonly affects both of the eyes, and is a very common cause of sight loss in kids. It can eventually lead to blindness. Not every premature baby born will have ROP.
Roughly 14,000 to 16,000 premature infants are born with ROP each year in the United States alone. About 90% of all these cases are classified as the mildest form of the disorder, which does not require treatment to fix. The disorder will improve and there will be no lasting damage in these cases. However, over 1,000 of these infants will be born with ROP that will be bad enough to require medical treatment. Legal blindness from ROP affects about 400 to 600 of these babies each year. ROP is classified in 5 different stages. Stage 1 is mild, going up to Stage 5, severe.
The cause of ROP starts with the growth of abnormal blood vessels. These blood vessels then spread through the retina, and are so fragile they can leak. While they spread, they can pull the retina out of its normal position, causing a detachment. This is the main factor in babies that are born with ROP and experience visual problems and blindness. Since retinal blood vessels generally takes up to the 9 months gestation in the womb to complete growing, a premature baby will stop the normal vessel growth. The retinas edges will then be deprived of the oxygen and nutrients they need to fully develop. Breakthroughs in science have concluded the retina will look for other parts of the retina they can find nourishment from, causing new vessels to grow, this time abnormally. These are too fragile and can bleed, which leads to the retinal scarring.
There is treatment for ROP, including both laser therapy and cryotherapy. Each treatment essentially destroys the retinas peripheral areas, which then stops or reverses the abnormally growing blood vessels. Laser therapy is conducted by burning away the periphery area, while cyrotherapy involves freezing the surface of the eye. Both treatments will inevitable destroy some of the patients side vision. This is done so that the most important part of the vision, the area that looks forward, can be saved. These surgeries will only be considered for babies who are in Stage 3 of ROP. Doctors do not yet know what side effects, if any, can occur long term.
Babies who are born with ROP will be more likely to have certain vision problems later in their life. This may include myopia, which is commonly known as nearsightedness and can be corrected with prescription eyeglasses. Crossed eyes and lazy eyes may also develop later, and glaucoma may also be an issue later in life. Luckily, these conditions are easily treated by an experienced optometrist.
Have any of you discovered Pinterest? Addicting to say the least, I can look thru there for hours on end and never seem to find the end.
So I found a Pin it to Win it contest and I took a chance and I entered, it was from www.visitbuckscounty.com and they had several different things you could win, I happened to win four tickets to Sesame Place. Im tickled to death about this because my girls have not really been out and about much, its hard when you have two that have lung disease and get sick very easily and then one that is fine but is on lock down because of the other two.
So this is going to be a great opportunity for us as a family to get away and do something extra special for the kids. I received an email today from the contest and they have decided since we live so far they are going to give us a $100 gas card and a one night stay at Holiday Inn Express and upgrade our tickets to 2 days.
What a blessing this is, God truly does work in your life if you believe and not worry about how things will happen. Ive been worrying so much about how I would take Noel to the feeding clinic that any and all leave I would accumulate would go to her trip, which I had to cancel because I could not come up with the time or money. I think I could swing two weeks but we will still need help with bills, but Im so blessed to know that we have a vacation for the kids now. They deserve it, they may act out and not listen at times but its all about growing up and testing the waters they have been on lock down for 4 years, they fought hard to be where they are today. Im going to fight hard to give them everything that I can.
Hello everyone , Im transitioning my old blog to the new wordpress blog so hang in there as I learn this new site and I will have lots of info to come.