Thursday, February 23, 2012

Angel Gowns by Michelle

I have never been married myself but for those of you who have and are wondering what to do with your wedding dress -- this is a worthy cause to donate it to. This precious lady, who has worked in the NICU for a decade, decided to cut up her wedding dress and make preemie sized "angel gowns" for those who didn't make it home. If we had lost my daughter way back then, I would have loved knowing something like this was available to me.

You can find her page here or on Facebook at Angel Gowns by Michelle.

Wednesday, February 22, 2012

SN kiddo whose family lost everything in a house fire - please help if you can!

The family of a 4 year old special needs little girl named Monica needs your help! Her family lost everything to a house fire this past Friday. They need clothing/shoe donations and myself and Analeigh's physical therapist, Kerry, are accepting monetary donations as well. Please visit the ChipIn page to read details regarding the kids' sizes and to donate.

Thank you all so much for any help you can give to this family!

Free Samples from NeoTech

I just discovered, through someone in a Facebook group I'm in, that you can order FREE samples from NeoTech. You can get things like NeoTech Little Suckers, a suction caddy, trach ties (pink, blue, Hawiian or cammo), pulse ox probe wraps, etc. You don't even pay shipping!

Check out and order your FREE samples today! I don't know about you guys but these are all things we already use but don't get a whole lot of, if any.

My Sisters (borrowed from a friend)

♥ For my SN mommies, also known as my sisters! I don't know what I would do without you guys!! ♥ This a long one, but good! :) Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You're my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. 

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations and blood tests. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changes. Something wasn't quite right. Then we found ourselves mothers of children with special needs. 

We are united, we sisters, regardless of the diversity of our children's special needs. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology and psychiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have learned to deal with the rest of the world, even if it means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and re read them during our toughest hours. 

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front door on Halloween, and we have found ways to help our deaf children form words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. 

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in like knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands and together, we special mothers and our special children, reach for the stars. 

♥ Author Unknown

Tuesday, January 24, 2012

Tubie Friends

My daughter received a tubie friend from this wonderful organization. You can request one for your tube-fed child or for your child who will be having a feeding tube placed soon by contacting them at If you don't have a tube fed child, you can help support this wonderful organization by donating via PayPal (see details on their Facebook page). They also accept donations like feeding tubes (G, GJ, etc) and supplies.

Here is a picture of my daughter, Analeigh, with her new tubie friend (who we have not yet named lol).

I just love that there are people out there who can come up with these wonderful ideas and share them with the rest of us! I am excited by our Tubie Friend because it will also serve as a great teaching tool for my son Jayden as he grows up! If you can, please help support them and their cause in whatever way you can!

Thank you!

Sunday, January 15, 2012

Tripp Made His Trip to Heaven... Read & Learn about EB in his honor!

This morning I followed a link to this blog (posted by a friend) and was not prepared for what I saw/read. Up until this morning, I had never heard of Tripp or the rare disease he suffered from called Epidermolysis Bullosa (EB). This sweet little boy passed away yesterday at 2-1/2 years old after a painful fight. God Bless him and his awesome mommy. I hope you all read his story (with a box of tissues, of course) and educate yourselves about EB so that you may spread the word and help raise awareness. You can click the link above and it will take you straight to the blog. I borrowed an excerpt from the blog to tell you a little about EB...

 About Junctional Epidermolysis Bullosa

Junctional EB
What is the cause of Junctional EB?
Through research it is now known that mutations in the genes encoding alpha 6, beta 4 integrin, collagen XVII or one of the three chains of Laminin 5 contribute to defects in the formation of hemidesmosomes or anchoring filaments.
Defects within any of those components of the skin allows for the separation of tissue and blister formation whenever there is friction or trauma to an area. In many instances blistering can occur spontaneously.
There are three major sub-types of Junctional EB. Herlitz, non-Herlitz and Junctional EB with associated Pyloric Atresia. Though Junctional EB is considered a non-scarring form of EB, tightening and thinning of the skin does occur. In many instances residual atrophic scarring occurs.
How is Junctional EB Inherited?
JEB is an autosomal recessive condition. This means both parents are healthy carriers. Healthy carriers are non-symptomatic and will never develop the illness. When each parent has a copy of the altered gene, there is a 25% or 1 in 4 chance the child will be affected by Junctional EB. Unfortunately, there is no test to detect carriers for JEB. We are made aware that the parents are carriers after the child is born.
Junctional Herlitz EB:
Junctional Herlitz EB is a very severe form of EB. These infants often die during infancy due to overwhelming infection (sepsis), malnutrition, dehydration, electrolyte imbalance or complications resulting from blistering in the respiratory, gastrointestinal or genitourinary tract.
Some babies develop a hoarse cry and breathing difficulties which indicates internal involvement as well. These infants often fail to gain weight. These are usually symptoms of the severe form of Junctional EB.
Blistering is usually present at birth, however, there have been instances of infants being discharged to home, with a small blister on the finger or lip. After they are home, the blistering becomes more apparent warranting a visit to the physician. Skin blistering and ulcerations can occur spontaneously on the arms, hands, finger tips, back of the head, neck, shoulders, trunk, buttocks, legs and feet and toes (generalized distribution). Nails may be ulcerated or dystrophic. Warmer climates can exacerbate blistering. Blistering is noted on perioral (around the mouth) and mucosal surfaces as well. Oral lesions may affect eating causing weight loss.
Electron microscopic evaluation of the structure of the skin in a patient affected with JEB-H usually shows skin separation in the lamina lucida within the basement membrane zone. Absent or reduced amounts of hemidesmosomes may also be apparent.
Junctional Herlitz EB mutations are present on the genes encoding one of the three chains of Laminin 5.
Junctional non-Herlitz EB:
Generalized blistering and mucosal involvement may be evident at birth or soon after. Blistering may be mild to severe. Erosions on finger and toenails, nail dystrophy or absence of nails may be evident. Erosions and loss of hair (alopecia) upon the scalp may occur. Granulation tissue around mouth and nares may be seen. There may be some scarring and thinning of the skin on affected areas (atrophic scarring). Warmer climates can exacerbate blistering. Though laryngeal involvement (hoarse cry) may be experienced in early infancy, respiratory distress is a rare occurrence in this type of Junctional EB.
The infant may suffer complications such as infection, dehydration, electrolyte imbalances, respiratory, gastrointestinal, and/or genitourinary tract involvement. These complications may lead to death.
Electron microscopic evaluation of the structure of skin in a patient affected with JEB-nH shows skin separation at the level of the lamina lucida of the basement membrane zone. Variable appearance of hemidesmosomes may be visualized as well.
JEB-nH mutations usually involve the genes encoding type XVII collagen also called (BP 180 ). Occasionally mutations in laminin 5 are seen.
We are not sure if Tripp has Herlitz or non-Herlitz. The biopsies were inconclusive.
Read more about EB at

Monday, January 9, 2012

Some Useful Information

I have stumbled upon a couple of Facebook groups I would like to tell you all about. The first is for parents with kids who have Cerebral Palsy and currently has 2564 members. I imagine that it offers a wealth of support and information for parents who are raising kids with CP. You can ask to join at!/groups/CerebralPalsyInfo/.

The second group I'd like to mention to you all is called Mito Wish Upon a Star and is centered around kids with Mitochondrial Disease. It's not exactly a support group but is more like Special Gifts for Special Needs. Sponsors send gifts of all kinds (including gift cards) to kiddos/families of children affected by Mitochondrial Disease. You can ask to join the group if you are a Mito parent or want to become a sponsor. They are currently accepting volunteers to send birthday cards to the children and their siblings each month. You can ask to join at

A lot of you reading this are probably already members, but if you aren't and you are a parent/care giver of a special needs child, you can also join one or more of the following groups:

2. Kids with Vents Facebook Group @
4. Loving A Miracle - Special Parents Supporting Each Other @
5. Trach mommies, Trach babies & Trach buddies! @

These are all groups that I am a part of (with the exception of the CP group) and enjoy participating in. I hope you all find some support in them as well.