Medically Fragile Door Sign by Love For Everly

September 3, 2015 By in Special Needs Friendly Products Tags: , , , , , , , 3 Comments
Medically Fragile Door Sign by Love For Everly

It was brought to my attention there is a beautiful hanging sign for only $12.00 at Love for Everly’s Etsy Shop. No printing is required, and the proceeds go toward the cause detailed below. I know a large portion of you don’t actually want to have something professionally printed. This is a nice alternative. As you’ll see when you visit, there are options for a baby boy, baby girl, young boy, young girl, and multiple children.

My daughter, Everly Marie Hopkins, was born with Trisomy 18, a complex and mostly fatal genetic condition. This chromosomal disorder affected every part of her body making her a prime candidate for infection, illness and early death. Any small sickness carried by someone else could potentially be life-threatening for her tiny body. In a desire to protect my daughter, I placed a specially designed sign on our front door alerting and/or reminding potential visitors of her fragility. I hunted high and low for a sign such as this but to no avail and thus had to commission a custom sign be made. Thus, came the inspiration for our sign…to politely but stylishly share how careful we must be around our medically fragile babies and children. If someone you love or know has a condition that requires extra care and barriers at times (like cold and flu season), this sign is the perfect choice!

Continue reading →

Why My Child Doesn’t “Look” Like They have Special Needs

September 3, 2015 By in Noonan Syndrome-Like Disorder Tags: , , , , , Leave a comment

I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.

Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.

Source: Why My Child Doesn’t “Look” Like They have Special Needs

Generously Donated Signs for Medically Fragile Children

September 2, 2015 By in Special Needs Friendly Products Tags: , , , , , , , , 18 Comments
Generously Donated Signs for Medically Fragile Children

In response to the recent flurry of discussion around how to keep our special needs children well, one of the moms in our support group graciously agreed to donate printable signs for medically fragile children. I asked for a name to credit, and the creator generously declined.

Continue reading →

4 Reasons Special Needs Kids Can’t Afford to be Sick and How to Help

September 1, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , , , Leave a comment

We, as special needs parents, spend a lot of time fighting off illness. It’s difficult to explain to friends and family members what’s necessary to keep our kids well, and what they can do to help. I’ve listed a few common reasons special needs kids just can’t afford illness, as well as what friends and family can do to help in each case.

Continue reading →

Special Needs and Toddler Sleep

August 30, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , 2 Comments

It’s extremely common for children to have sleep difficulties. There are so many things that make the little ones too uncomfortable to sleep. Teething, growth spurts, and even learning new skills can tip the balance between a restful night’s sleep and a restless one. Unfortunately, sometimes for special needs kids there’s more complication than normal getting your child to rest. Further muddying the water, your child may not be able to communicate what’s wrong. What do you do? The best you can, and that’s really all there is to do.

Continue reading →

Acceptance and Your Child’s Illness

August 28, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , Leave a comment

There are five stages of grief in the Kübler-Ross model. I’ve sourced the stages from Wikipedia.org and shortened them where appropriate.

  1. Denial — The first reactions is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
  2. Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
  3. Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. Other times, they will use anything valuable against another human agency to extend or prolong the life. People facing less serious trauma can bargain or seek compromise.
  4. Depression — “I’m so sad, why bother with anything?” […] During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
  5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future […] this state […] typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Continue reading →

The Difficulties of Being a Parent to a Child with Hypotonia

August 26, 2015 By in hypotonia, Noonan Syndrome-Like Disorder Tags: , , , , , , , , , , Leave a comment

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

Continue reading →

Information to Share with Family Members and Friends

August 25, 2015 By in Feeding Tube Tags: , , , , , , Leave a comment

Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.

Continue reading →

10 Signs You’re a Parent of a Tubie

August 23, 2015 By in Humor Tags: , , , , , , , 6 Comments

Thought some of you moms (and dads) would enjoy this. Please share it with others that need a smile.

  1. Some sounds will wake you out of a dead sleep and will probably continue to do so for a long long time, if not the rest of your life. The high pitched beeping of a medical grade pump, for instance.
  2. When you have to give medication to a child without a feeding tube, or they have a belly full of gas. You won’t really wish they have a feeding tube, but you’ll think for at least a brief moment you would be able to help them a lot more if they did.
  3. The idea of dropping your child off at daycare is foreign to you. If you leave your child with anyone, they’ve gone through at least several days of training to make sure the caregiver isn’t going to cause an emergency room visit.
  4. You don’t wait more than an hour to be seen in the emergency room, because if it’s not something the doctor would be willing to call ahead for you can take care of it yourself at home.
  5. You already know what’s wrong with your child when you take them to the hospital, but the hospital is the only place that can do the things you need done fast enough to prevent your child from developing complications.
  6. It’s no longer surprising when someone implies you’re a bad parent. “Obvious,” solutions for your child’s complex medical problem seem to flow from everywhere. Clearly all of the therapists and specialists you’ve been seeing for years are incompetent and have no idea what they’re doing. They couldn’t have possibly suggested these, “obvious,” solutions when you first started seeing them. It’s not like your child’s medical professionals have experience with these types of problems or anything.
  7. You know immediately whether or not a doctor or resident has read your child’s chart as soon as they walk in the room. They’d look a lot more terrified if they had.
  8. If an elective admission has to be pushed from June to July you ask to be called if there are any cancellations in June or to take care of it in September.
  9. By the end of the year, you haven’t had to pay out of pocket for medical services for at least three months, and for some as many as eleven.
  10. People tell you they don’t think they could ever handle the things you’ve been through with your child’s medical problems. You look at them like they’re crazy, because you can’t imagine anyone doing anything differently. There’s way too much love in your heart for that little angel to let them suffer a minute more than necessary.

Becoming a Medical Mom

August 21, 2015 By in Book Announcements Tags: , , , , , Leave a comment

It’s about time to unveil the cover art and title of my book, “Becoming a Medical Mom.” I’m still working on the second draft, with plans to finish at the end of this month and start on the final draft beginning in September. I’m planning to release mid-October assuming nothing comes up with my son’s health which prevents me from finishing on time. Once it gets closer to the deadline, probably when I’m on my final draft, I’ll announce when the book is available for pre-order. I’m looking into getting print copies, but the primary publication format will be kindle e-book.

cover_pen small