All About Therapy - Part 1

This world I now live in with a special needs child includes hours and hours of therapy appointments.  Zachary's first therapy session began when he was 4 months old. He was teeny tiny and the muscles in Zachary's body were so limp and that he could not even hold up his head.

We started weekly therapy sessions a couple of years before we even knew if or what syndrome Zachary may have had. What we did know was that things just weren't right.

Zachary is now 2 months away from turning 6 years old. Together, he and I have attended over 68 months of therapy. That's 292 weeks of therapy sessions and we're talking at least 3 appointments a week so that's a guaranteed 876 appointments. But wait! There were 2 rounds of intensive therapy where he was attending 7 sessions a week plus the other 2 a week so 9 sessions PER WEEK. Then there's the in-home therapy we did for a while. After doing a little math, our little man and I have together attended around 1,000 hours of therapy appointments in his almost 6 years. The crazy thing is, we're just getting started! I'm sure there's thousands of appointments to come in the next 6+ years.

I do that math not to make you sound impressed, but to let those of you who walk this same path know that you're not alone! If you're on a similar journey, you know that as a parent we'll do whatever it takes to help our kids grow and progress - even if it is sitting in an uncomfortable chair for several hours every single week. It's SO worth it!

Therapy appointments are fun, stressful, amazing, eye-opening, bring smiles, and bring tears. Zachary is stubborn, wants to do everything his way, would prefer not to be told to work hard or be pushed or stretched to learn new things, has a scream that can fill the entire therapy clinic, and a giggle that when it creeps into a therapy session will make tears of joy well up in my eyes.

Therapists are amazing people. They've become our friends, support system, biggest cheerleaders, and advocates for our children. Our therapists may make our little ones cry at times but it's all for pushing them to be better, stronger, comprehend more, speak better, eat more, and react to situations better. The list is long.

If you are a therapist of any kind, you are a super hero. If you have been one of Zachary's therapists you are a ROCKSTAR and have more patience than I can begin to describe!

Therapists see the best in our kiddos, seeing the potential when a tired mom has no faith left that even more progress can be made. 

During our Special Needs Life Hacks Webinar this week, Melissa and I talked therapy. There's so much to cover when it comes to therapy that we divided this topic into 3 parts. In our first episode we shared our therapy stories and about the different types of services our kids get. You can watch below or check out the Special Needs Life Hacks YouTube channel for the therapy video and previous episodes.

In the next 2 episodes, we'll share a glimpse into what exactly therapy has looked like for each of our different cases and try to cover many of the little details that are involved. Finally, in the 3rd session we'll chat about some of the heart level things that come up as a mom who is constantly taking her child to and from appointments. We'll even throw in our sanity savers to maybe help you too survive the therapy mayhem!

After spending 1,000 hours in a therapy clinic, I have a few "life hacks" I'd like to present to the hospital board. I think recliners for the parents and a coffee bar sound glorious! Can I get an Amen?!

How to Organize Medical Supplies and Equipment

Once again this is a topic I knew absolutely nothing about a short couple of years ago. I had no idea there were medical supply companies or that needed supplies would get delivered to your door. I also had no clue HOW MANY supplies were required to take care of one child.

Zachary receives deliveries each month from 3 different medical suppliers. The biggest delivery we receive are the supplies for his g-tube feedings. Boxes and boxes of formula, feeding bags, tube extensions, gauze, syringes, and more fill the closet in Zachary's bedroom. 

The second delivery arriving usually a week later is boxes of diapers, diaper liners, bed underpads, and diaper cream. What an AMAZING blessing! Typically when your special needs child turns 3 or 4 insurance will pay for diapers and diapering supplies. Zachary's pediatrician got the ball rolling the prescription for these.

Growth hormone is usually the final delivery each month. The medicine arrives on ice packs along with the needed needles and alcohol prep pads.

I'm guessing I'm not the only one who find's it super easy to bring the delivery boxes in the house and then get busy with the rest of the daily tasks and leave the boxes sitting in the living room. My first tip is to deal with the medical supplies and boxes right away.

On our SNLH Webinar this week, Melissa and I are shared our experiences with medical supply companies and tackling organizing the literal piles of boxes of supplies that arrive each month. 

Check out the webinar below...

Missed previous episodes? Visit the Special Needs Life Hacks YourTube channel.

How to Prepare for Doctor Visits

Before Zachary, doctor appointments for my children consisted of well-check appointments and what seemed like the yearly ear infection visits for antibiotics. I would call and make an appointment, go to the doctor, get the sick child weighed and measured, leave with a prescription order, and that was it. That's all I knew!

Zachary's first appointment with a specialist was at 2 days old. I was a tired, sore, emotional mother who had just gone through the most traumatic delivery I had ever faced. I sat in that doctor's office and the tears flowed. I learned my baby would have 2 upcoming eye surgeries. I was so scared and felt so clueless as to what was ahead.

That 2 day old baby is now 5 1/2 years old and I would have never believed you if you told me the amount of doctors appointments we would have faced so far in his short 5 years. Looking back I had no idea what was involved. It's kind of crazy yet kind of fun to think about how far we've come and how much my husband and I have learned along the way.

For the very first Special Needs Life Hacks topic, we're sharing a little glimpse at what we wish we had known when we first started this journey with literally lists of specialist doctors. My friend Melissa and I will be chatted about this topic and went into how we prepare for doctor visits.

One of my biggest sanity savers is the prep I do the week before an appointment. Right close to that is the sanity saver of learning to leave an extra 30 minutes early to have time to stop for coffee along the way. Coffee in hand when I walk into any hospital or doctor appointment is a must! Ha!

In this webinar you'll hear...

• What to prep the week before 
• What to do the night before
• What to pack for appointment day
• How to not lose your mind
• What to expect during and after appointments

Preparing in advance is more of a must than I ever knew. We're share our tips and tricks. 

The webinar is now up on YouTube! Visit the SNLH channel or watch the episode below.

Special Announcement :: Two Are Better Than One

It's always an exciting time in any pregnancy, that 20 week ultrasound to put a worried mother's mind at ease. Pretty much all parents look forward a chance to visibly see that tiny heart beat, to get the classic profile shot, and find out the gender of your growing little one. 

I remember it like it was yesterday - our doctor saying "I don't know exactly what that is" when the large white spots were noticed on Zachary's eyes on the ultrasound. It was from that day on things felt different. Unclear on what was happening, we kept the news to ourselves, only sharing the concern with a select few. 

That was the beginning of a strange loneliness that can be felt by parents with children who have special needs or medical issues. Even though you can be wrapped in love and concern from friends and family, (whom I'm SO grateful for and desperately need) there's something amazing that helps fill the strange loneliness when you're able to find someone who understands and has been in similar situations before. 

Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Ecclesiastes 4:9-10 (NIV)

When you find your "people" who get it and can share their experiences with you, there's an instant bond and a feeling of hope.

I have found my "people" and I'm so grateful. 

After we had a name for Zachary's syndrome I quickly found an amazing group of mothers in a Facebook group who also each had a child with the same rare Lowe Syndrome. Although we haven't met face to face I feel like I have so many friends. Friends and mothers who understand our medical questions that include big hard to understand words, moms who are going to the same piles of doctor appointments we face, and fellow parents who I can ask a question to day or night. 

I believe this is the beautiful side of social media. I'm so grateful to live in the day and age we live in and have the ability to make these connections. 

To my Lowe Syndrome mamas - I couldn't do this without you!

Another connection I have made that has been a massive blessing was a friend I truly say was at a God-ordained appointment about 3 years ago. I had won a ticket to a blogging conference and before I knew it was hopping a plane. I traveled alone to a conference where I knew no one, and was a bit unsure why God wanted me to attend. When my introverted self took a break from all the chatter in a quiet room across the hall, I sat down next to Melissa. We introduced ourselves, chatted, made a connection, but that was it. 

Little did I know three years later I would have turned to Melissa with questions more time than I can count. Melissa is like a walking medical encyclopedia - has walked through many things we have, and has a passion for blogging like I do. We've been a perfect fit even though she lives on the other side of the country.

I'm super excited to share that Melissa and I have a fun announcement! 

Melissa and I are launching a series we are calling Special Needs Life Hacks. Many times I have said "I wish I would've known that earlier." Trust me - I don't have all the answers. And on some topics Melissa and I may have completely different approaches. But we'll be sharing what we've each learned along the way as we have navigated doctor appointments, therapy sessions, feeding tubes, and even caring for the rest of our family amidst the crazy! 

What to expect...

Bi-weekly posts from Melissa and I at each of our websites covering the same topic. The Thursday following our post going out, we will have a webinar with both of us for you to join in on. You will be able to ask questions, hear our stories, experiences, and things we've learned along the way. Don't worry - the webinar will be saved so you can watch it later! 

We pray our posts and webinars/videos become a great resource for those starting their new journey with a special needs or medically fragile child. We may not have all the answers, but we can share what's worked or hasn't worked for us!

Whether it's a text to my dear friend Kim who has a special needs daughter, a quick Facebook post to a fellow Lowe Syndrome mom, or a voxer message to Melissa - I don't feel alone. 

Find your "people" to walk this journey with you!

I hope you'll join us next Tuesday for our very first week Special Needs Life Hack! You can find Melissa blogging at Blessed Simplicity. Go follow her right now!

TO REGISTER for our first webinar February 9 head HERE or click the image below.