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 http://www.facebook.com/tubiefriends. 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!

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

Click Here to Read Courtney & Tripp's Blog

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 www.debra.org

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 http://www.facebook.com/groups/CerebralPalsyInfo/#!/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 http://www.facebook.com/groups/mitowishuponastar/.

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:

1. SN Parents @ http://www.facebook.com/groups/167964243217779/

2. Kids with Vents Facebook Group @ http://www.facebook.com/groups/kidswithvents/

3. Tracheostomy @ http://www.facebook.com/groups/63417059663/

4. Loving A Miracle - Special Parents Supporting Each Other @ http://www.facebook.com/groups/lovingamiracleismoving/

5. Trach mommies, Trach babies & Trach buddies! @ http://www.facebook.com/groups/alltrachs/

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.

Special Gifts for Special Needs - Prayer Page Now on Facebook

*Photo courtesy of Nicole M. Tuttle

 

Prayer requests submitted using the form on this blog will be added to the new sister page for Special Gifts for Special needs which can be found at http://www.facebook.com/pages/Special-Gifts-for-Special-Needs-Prayer-Page/180631645367374. As soon as we get enough fans, the address will change because Facebook will then allow me to choose a username for the page (5 more "likes" to go). Check this page periodically so you are aware of which kids need prayer. I ask whoever is willing to pray for these kids and also encourage you to add them to your local church's prayer list or prayer group. 

I thank each and every one of you for all your support, whether it be with sponsoring a special needs child, submitting your child's information so we can do something nice for them, or praying for these kids who desperately need it.

Special Needs Resources/ The M.O.R.G.A.N. Project

I ran across a link to the webpage for The M.O.R.G.A.N. Project and thought I would share it with you all. If you have a special needs child who needs certain adaptive equipment that insurance will not cover and you cannot afford, check them out! They are an official non-profit organization accepting donations as well... so if you don't need anything from them, please donate to help someone who does! I borrowed some information from their website at http://themorganproject.org/index.html that I have posted below for you to read.

ABOUT US

HISTORY
The M.O.R.G.A.N. Project is a 501(c)(3) non-profit organization, established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and because we do not use our charitable contributions for salaries, 100% of our proceeds go towards meeting our goals.

Robert & Kristen feel honored to have been chosen to be the loving and caring parents of this very special, heaven-sent child. But most importantly, they also feel that it is their privilege to do so.

AIM
First and foremost, we must recognize that it takes a special person/parent to take on the responsibilities of caring for a special-needs child, whether your own child, a foster child, or adopted child.  However, it takes an extremely exceptional   person/parent to recognize that it is our privilege, not just our obligation, to be loving caretakers to these very special Heaven-sent angels, and make their lives as rewarding and comfortable as possible.

The M.O.R.G.A.N. Project was established to help these amazing people do just that!  

MISSION
"Working together to promote awareness and support of parents caring for their special-needs children, and to enhance the quality of life for these special families."

Our Mission is to provide support to parents/caregivers and act as a reference source for information, financial resources, used equipment exchanges, research and clinical studies, support groups, web links, etc. This will be done in the form of creating an interactive website, and monthly newsletters.

To try to consolidate, and then disseminate, all the available information tools available to caregivers, from sources such as the internet, newsletters, parenting organizations, support groups, etc. There is a lot of information out there, but it takes so much time to search for it that most caregivers just don’t have the time to spare to look for needed assistance on their own. We would like to put together a newsletter that would be a source of information for parents/caregivers to help them help their children.

To make small individual grants (products & services only) to parents/caregivers of special children for travel expenses to attend medical conferences that they would not otherwise be able to afford to attend. No parent/caregiver, or their family for that matter, should have to “bleed” in order to give their child the opportunity to be evaluated by experts, and to seek the support of other families in the same situation.

To make small individual grants (products & services only) to parents/caregivers of special children, for things like positional seating, adaptive car seats, durable medical equipment not covered by Medicaid or Insurance, and other non-covered items that would make caring for these children easier on the parent/caregiver and help to improve their quality of life.

PRIMARY GOAL
Our primary goal right now is to aggressively seek corporate sponsors, large donors and dedicated volunteers in order to become a viable organization, make valuable connections & tap resources in our community, and to continue to raise funds in order to provide the goals of The M.O.R.G.A.N. Project.

Please .... won't you consider helping?

The Top 5 Things a Special Needs Parent/Care Giver Might Want For Christmas

I read a post on Facebook earlier about 10 things a special needs mom might want for Christmas and thought of my own list... here it goes.

The top 5 things a special needs parent/care giver might want for Christmas that is guaranteed not to come wrapped in pretty packaging underneath the Christmas tree...

#5 - Someone to help carry the burden. It's easy for a special needs parent/care giver to feel alone in their journey with their special needs child. It's extremely difficult to feel like you're the only one who worries about scheduling and attending doctors' appointments,  refilling a long list of medications, fighting with insurance or DME companies over supplies, worrying about how you're going to pay for therapies/treatments your child needs and whether or not your child will wake up another day when you lay down to sleep.

#4 - Alone time. In the craziness of all those dreaded hospital/doctors' trips, sometimes you just need a break from all the worry and pain. No beeping alarms, no breathing treatments, medications to give, positioning to do, bills to fret over. Just you with nothing to do, nowhere to be and no one to take care of. An hour of peace and quiet.

#3 - Understanding. I know from experience how it feels like no one really understands. You crave people who can actually relate to you and don't look at you like you've lost your mind when you excitedly tell them how your 5 year old ate a cracker by mouth without throwing it up. You know, people who know a little something about kids who aren't "normal" and don't do things on a "normal" schedule.

#2 - To see a smile on the face of your child, to hear him/her laugh or make a single sound. Us special needs parents/care givers know just how precious these things are because a lot of us never get them, or once did but no longer do. You hope and pray for this one little thing that so many others take for granted because if you could just see/hear your child, you could have hope for one more day.

#1 - A miracle. Wouldn't it be nice to wake up one day, any day, to discover your child has finally received that miracle you've been desperately hoping and praying for? That miracle cure that makes all the pain and sadness go away? I know I would give anything in the world if my daughter could just get that miracle!

I'm sure you all have your own list of things you might want for Christmas that doesn't come in pretty packaging and that you're sure not to find under your tree this year. Share these things and I'll post them here!

Our Story

My daughter, Analeigh Rain, was born 14 weeks prematurely due to a premature rupture of membranes when I was 26 weeks along in my pregnancy. She was diagnosed with Chronic Lung Disease shortly after birth and at 4 months of age, a tracheotomy was performed due to respiratory failure. She was placed on full ventilator and oxygen support and finally came home after spending the first 6 months of her life in the NICU at Clear Lake Regional Medical Center in Webster, TX. Soon after coming home, Analeigh began to thrive. She was bottle fed, learning to sit up with minimal support, was able to roll over from her back to stomach, babbled despite the trach, played with her toys, smiled and was learning to crawl. She was also being weaned on her oxygen and ventilator settings. She was a normal, happy baby with the exception of the trach and vent.

At 9 months of age, the unimaginable happened. After a typical day and an evening feeding, Analeigh became suddenly agitated. Her nurse tried consoling her but was unable to determine what was wrong. Her dad went into her room to check on her and almost immediately, she turned blue and stopped breathing. They put her in the crib and began CPR immediately but it quickly became evident that help was needed. I called 911 and during the ten minutes or so it took for paramedics to arrive, the nurse and I continued to perform CPR to no avail. She had no pulse, no life in her. Paramedics took over CPR efforts and moved her to the ambulance in our driveway. Another twenty minutes or so went by and we were told she was being transported to Children’s Memorial Hermann in Houston via life-flight and we should leave immediately to meet the transport team at the hospital.

Upon reaching the hospital, we learned that they lost her again during transport for approximately 5 more minutes but had since stabilized her. As soon as we were allowed to see her, it was evident to me that something was seriously wrong. My baby girl was no longer the same. She was non-responsive to any stimuli and we soon learned that she had suffered massive brain damage as a result of the prolonged lack of oxygen to the brain.

Analeigh is now 20 months old and has many new medical problems she did not have before. She had surgery to have a feeding tube inserted into her abdominal wall because she could no longer be bottle fed. She is now on many medications to treat seizures, high muscle tone, high blood pressure, severe acid reflux and has to undergo regular physical therapy and also vision therapy as she now suffers from Cortical Vision Impairment (CVI). She may never have the ability to eat, walk, speak or be without the trach and ventilator.

So, where is the upside to all of this, you might be wondering? Prior to Analeigh’s birth, I was ignorant to the plight of “special needs” children. Since then, my eyes have been opened and I started wondering what I could do for other kids and their parents facing journeys similar to ours. And so, the Facebook group called Special Gifts for Special Needs was born. Our group’s mission is to provide a simple handmade gift accompanied by a card with words of encouragement to special needs children all over the United States and even in the United Kingdom. Since the day the group was established on December 5, 2011, approximately 50 children have been accepted into the group and sponsored by an individual. With no requirements such as income, diagnosis, severity of diagnosis or any other limiting factor, the group’s goal is simply to provide love and support to these beautiful, amazing and inspirational children and their families.

To date, we have kids with a broad range of diagnoses ranging from ADHD to Spinal Muscular Atrophy (SMA) Type 1 which is terminal. Children with SMA are usually diagnosed around the age of 6 months with a life expectancy of a mere 2 years. Their stories will not only break your heart but open your eyes as well. Some of the kids, such as my daughter, are completely unaware of the gifts and cards they receive in the mail. Their parents, however, are not. These parents are overwhelmed with the knowledge that each new day could be the last their child ever sees and they are desperate, hurting, and in need of someone to reach out to them and let them know that someone cares. While the gifts are handmade and sent to the children, just the simple thought brings a parent to tears. I know this, because I am one of them. The group is just as much for the parents as it is for the kids.

It is my hope that we can one day become an official non-profit organization but we cannot do it on our own. The group currently consists of 50 members/sponsors with the same number of children registered. My dream and goal for this group is to reach as many special needs children and families as possible and warm their hearts with the knowledge that someone is actually listening, someone sees their struggle and it matters. In order to do this, we need more donors and sponsors. I am hoping to find an attorney who will donate their time and resources to helping us become an official non-profit organization and individuals who are willing to donate their time and money to putting smiles on the faces of these hurting people. This is not merely a “Secret Santa” kind of thing. This is our life as parents of these amazing children, our dream to connect with other parents on a similar path, and our hope for the brightest future we can possibly give them.