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YOUR MEDICALLY FRAGILE CHILD AND EMERGENCIES…..ARE YOU PREPARED?
You cannot prepare yourself for every scenario at every moment in time (although many of us try). But, there are a few things that might lessen the stress and have the process run a bit more smoothly. It’s the reality of having a medically fragile child. Sometimes his or her condition becomes unstable and we are left with no choice but to dial 911. Some calls will be very sudden and preparation is impossible. In other situations, there there may be events leading up to the call that allow you a bit of time to prepare. Tips for being prepared for medical emergencies with your medically fragile child 1. Medical…
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My favorite children’s hospitals, doctors and medical suppliers in the Philadelphia metro region
Are you new to the Philadelphia area or looking for the right pediatric hospital, doctor or other medical service provider? If so, you are in the right place! I navigated pediatric care in the Philly area for eight years and I’m going to give you my cheat sheet of my favorite people. You may or may not end up utilizing their services, but at least it’s a starting point. You will notice that this is not a comprehensive list of providers in each category. There is a reason for that. I am only including providers and services that I would recommend to another parent. Anyone that I do not have…
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CHILD CARE HELP FOR SPECIAL NEEDS CHILDREN
Finding child care for any child is never a simple task. If you add your child’s special needs into the mix your options are suddenly…..well, are there even options out there? Those of us with medically fragile children know that with the constantly fluctuating health status and numerous doctor and therapy appointments going to work can be very challenging. Sometimes even finding a window of opportunity to leave the house to buy groceries is tricky. Whom can we leave our child with? We might be able to train a family member to stay with our child for a quick errand, but what if no family is nearby? Our need for…
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Adaptive Clothing – The Onesie
Where to find onesies/bodysuits for special needs children Life is easy when your child is young and various types of clothing can be found in typical cute children’s clothing stores (well, ok, life is never easy with a special needs child but you’ll see what I mean with respect to this topic when your child is older). Many of you know that once your child passes the age of 24 months some of the baby/toddler clothing we all take for granted is nowhere to be found. One of these items is a high-value item in our household, the famous ONESIE !!!!! We absolutely cannot survive without onesies. So you can…
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How to Create a Medical Summary for Your Child for Doctors and Hospitals
You’ve been waiting for that well-known specialist appointment for your child you scheduled three months earlier. Since you’ve waited so long to have your child seen by the specialist, why not get the most bang for your buck out of the visit? I mentioned this in a previous post for new parents, but I will reiterate it here. If you hand the basics about your child to the doctor in an organized manner, there is no doubt you will have a more productive visit. Remember those initial patient intake forms you often have to complete on arrival at the appointments before you see the doctor? Wouldn’t it be nice just…
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Favorite Adaptive Products
In my journey with our son, I’ve come across a variety of products after trial and error and when something works, I’m excited to share it with other parents! Every child is different so the products below may or may not work for your child but I’d like to share my experience with them. I am giving you my honest opinion about the products below and will not post any products I have not tried with our son on this page. This post does contain some affiliate links but my goal is to inform you about the product and give you a link you can quickly take a look at…
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Adaptive Equipment 101 (for Non-Ambulatory Children)
Equipment overload!! If your child is not able to walk, chances are that his/her physical therapist has suggested, or even tried, a variety adaptive equipment. There are so many types of adaptive equipment and at times it can really feel like your home has been invaded by all of them. So what is each piece of equipment for and what does it look like? 1. Adaptive Activity Chair Activity Chairs are used for children who may have inadequate head or trunk control, are unable to sit up on their own or cannot sit in a regular chair for a variety of other reasons. They can be customized with headrests, lateral trunk supports,…
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Wheelchair for Your Young Child – How do you choose the right one?
If your young child is unable to walk yet or has a permanent disability you may be using a baby/toddler stroller to get them around. Our son had poor trunk control and was unable to sit up on his own until the age of three. I was always looking at the latest strollers wondering if it would have just a little more support than our current one. I thought, “If it did, we may not ultimately have to get a wheelchair”. We ended up going through a variety of strollers. Eventually, our son became to tall to comfortably sit in any of them and we came to terms with the…
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Transitioning from Early intervention to Preschool
Just when you finally became comfortable with having therapists and teachers in and out of your home…it’s time to transition to preschool services!! Time certainly does fly, doesn’t it? Depending on your state this may be called “Preschool” or “3-5 services” or something else depending on which state you live in. In many states it is mandatory that these services take place in a school-based setting and other states may have options to extend home services for this age group (3 – 5 years old). Your early intervention team will help guide you through this process but it’s helpful to do your homework if you can. Around six months before…
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Your first IEP meeting
Tips for surviving your first IEP meeting You may be receiving early intervention services, or maybe you just learned your child hasn’t reached a particular milestone yet. In any case, developing an appropriate IEP (Individualized Education Plan) for your child can seem complicated. Here are some tips to help you prepare and make the process flow smoother. The IEP meeting date should be convenient for you, the parent(s). You are a major player in this game so the meeting date/time should take your schedule into account. Remember, if your child has multiple therapists/teachers finding a convenient time for all of them to meet can be tricky so if your schedule…
