Day in the life of a "Therapy Mama": Guest Post from Julia Bennett

I'm so happy to return from a little "Medical Momma Toolkit" sabbatical (!!), with a guest post from the very wise, generous and servant-hearted, Julia Bennett.  Julia is mom to four precious children, and their family is working toward the adoption of another little boy.  She is an administrator for the rapidly growing and ever-helpful "China Special Needs Information" Facebook group, which works to educate and support parents with current or potential special needs by creating a forum for parents to ask all their medical, therapy and other special needs questions.  Big thanks to Julia for sharing, loving and serving so beautifully.   She is a "therapy mom" willing to share what she has learned, and I am so grateful. 

 

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Some moms are "soccer moms". I'm a "therapy mama". God has blessed me greatly with my four children (Soon to be five, after we complete the adoption of our new little guy!). Two of my precious ones have developmental delays. Scratch that. Make that three with developmental delays once we get our new guy home. 

Therapy Monday Snapshot:

• 6:00am. Up and at 'em to get my crew of 4 little loves (6, 5, 3, 3 years old) dressed, fed and out the door. It is therapy day. Diaper bag...check. Morning snack...check. Water bottles...check. School work...check. Let's roll! (Why does it seem like we are moving out of the house, when we'll just be away until noon?!)
  
• 7:30 am. Physical therapy appointment for Josiah, while Drew simultaneously receives occupational therapy at the same therapy location.
  
• 8:30am. Drew gets speech therapy, while Josiah reads books in the lobby, his sisters work on their home school assignments, and I am on the phone with the neurologist office who is calling to reschedule an appointment for the third time. Sigh. (Note to self. Text mom to see if she can watch the other kids during the appointment).
  
• 9:00am. Josiah's turn for speech therapy while the girls continue their school assignments and I work to keep Drew from having a complete sensory overload meltdown in the waiting room. (Can this count as my upper body work out for the day? Yes? OK, good.)
  
• 9:30am. Snack time in the car while we drive to the local public school where Drew has his 3x/week speech class. The car time isn't wasted though, we all rock-out to our memory work skip counting math songs on the way. (Multi-tasking points for mama. Oh yeah!)
• 10:20 We all pile out of the car and into the school lobby to receive a 5 minute parent-education lesson from Drew's school speech therapist before he goes into class. Alyssa takes her big-sister role seriously and always makes sure we try and follow up with the home assignments that the speech teacher gives us.
  
• 10:30 While Drew is in class, the other kids and I pile back into the car and head to a nearby park for recess or to the library to check out some books.
  
• 11:30 Pick Drew up from his therapy session at school and arrive home just in time for lunch at noon, but not before rocking-out to more memory work on the drive home. We sing our history sentences this time and the kids include the hand motions. I'm sure we are quite a sight as cars pass us by.
  
• 1:00 After lunch it is rest/nap time for all, because-HELLO-we just had 5 therapy appointments before noon on a MONDAY!

For us, this is our normal. We've worked it into our routine, and are so very thankful to be able to provide therapy and get help for our boys. People ask me, "How do you do it all?"

 

First of all, I don't. We aren't able to participate in some activities that we used to, but that is ok! This is a season of life, and we are happy to embrace it.

Second of all, routine. Routine has been absolutely key for us. We have a game plan that works pretty well for our family, and we do all we can to stick to it.

•  Monday is our intense therapy day, where we have both private therapy and public school therapy. (Bonus points: the girls "get" to do school work in a different location than at the table at home. Variety is the spice of life, right?! Or, sometimes they stay at home with their rock star Dad and do science experiments or projects with him.)
• Tuesday afternoon is reserved for all medical related appointments (specialists, pediatrician, well-visits, eye doctor, AFO fittings, dentist appointments, etc.). I try desperately to plan appointments well in advance and to only schedule appointments during this time if at all possible.
  
• Wednesday:  Drew has public school speech therapy.
  
• Thursday: I work on anything related to medical bills and insurance issues.
  
• Friday:  Drew is back for public school speech therapy.

Routine. It is a beautiful thing. Routine creates normal. Our medical appointments and therapy sessions are not life's interruptions or burdens for us. They are our life, and we choose to embrace it!

I try my very best to make it fun for the kids. We explore new parks, we arrive at the children's hospital early so we have time to stop and see the lego display, we take our school work to Starbucks and sip on a tasty beverage while Drew is in class, we get to know the receptionists, therapists and staff and they become like family to us.

If your calendar is full of therapy and doctor's appointments, let me encourage you. It is worth it. You can do it. Your child is worth it. (It can even be FUN!)

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Here are some things I've learned along the way:
• The receptionist/scheduler is your new best friend. Truly, you want her on your side. She has power to make things happen that can help you.

• There are key times of the year where many people change their schedules. Watch for these times to help get a therapy time that works best for your family.

• Make the most of waiting time. Meal planning, phone calls, home school, one on one time with other siblings.

• Include siblings. Let them help reinforce what was learned during therapy at home.

• Evaluation days can be tough. I would much rather sit and talk about how wonderful my child is, but in order to continue getting the services that my child needs, sometimes we must talk through where they are behind and plan their next set of goals. I've learned that evaluation days can be tough for me emotionally, so I try and keep that in mind and maybe even plan a little something to look forward to later on in the day.

• The therapist treats the symptoms and is not the doctor. Don't forget to seek medical doctors to get a diagnosis if necessary, but therapy can often go on without a diagnosis.

• There are many opportunities to reach out, serve and encourage other parents with special needs kids and build relationships with everyone that you encounter (therapists, receptionist, social worker, etc.). Don't miss these precious opportunities.

• Work at home. Therapy isn't just about the appointment time.

• Pinterest therapy boards. There are many wonderful ideas online that are easy to duplicate at home.

• Try and sit in on therapy sessions so you know what to work on at home.

• Have a relationship with the therapists, social workers and teachers.

• Know your insurance benefits like the back of your hand.

 

Being a "therapy mama" might be a crazy life, but it is a life full of love, celebrations, compassion, joy, tears, struggles and triumphs.  And I wouldn't trade it for the world.
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Check out the rest of the posts in the "Medical Momma Toolkit".

 

 

Allowing It To Fall Away: Relationships and Medical Parenting, A Guest Post by Becky Ketarkus

In our experience, adopting a child with medical needs has both enlarged and shrunk the number of relationships in our lives.  It's widened our overall network, but decreased the circle of friends we actually do life with.  In her guest post, Becky Ketarkus, shares about this experience of having relationships fall away after adopting kids with medical needs.  

Becky is a mom of ten who has earned her credentials as a medical momma.  Read through her blog, The Full Plate, and the term supermom will come to mind.  She's a busy momma, an adoption advocate, small business owner, and pediatric advanced practice nurse.  She does all this while also juggling specialist appointments, surgeries, therapies, school and meds.    That she has shared some of her precious time to encourage other moms tells much about her heart. 

Fist pump to you, Becky.  Yes, yes, yes.  You nailed it.

 



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Mom Confession:  Prior to having children, my relationships with friends, and even family, looked completely different. 

 

That’s a no-brainer, right?  I think everyone who has a child or children will tell you that their relationships changed drastically once they became a parent.  You tend to flock to people who are in the same place as you in life.  Birds of a feather and all. 

 

I am also an extrovert.  So, I tend to ‘know’ about a million people.  In fact, people who know people who know me, are pretty sure I ‘know’ everyone.  I love chatting, connecting and relating to other people.  You don’t have to be a mom, I’ll still chat you up.  As my husband will attest, I can strike up a conversation with anyone.  So can he.  We’re people people. 

 

We never let the fact that we have an above average (let’s be honest, WAY above average) number of children truly isolate us.  We always have a network of people we can complain, celebrate, commune and grieve with.  For us, parenting has never been the isolating circumstance that it is for some.  As we added children to our family, our circle grew.  People rejoiced with us.  It was truly beautiful. 

 

Mom Confession:  That all came to a grinding halt when we adopted our eighth child.  And, I allowed it.  In fact, I welcomed it.

 

If you’ve read about us over at The Full Plate, you know that my husband and I are the very lucky parents of a child with severe Congenital Heart Disease.  We adopted her knowing she had a heart defect, but the severity of it surprised us a little.  When our daughter, Tess, came home, she was declared inoperable.  We were told she would die, likely before she reached her teen years. 

 

Life stopped. 

 
The social me, the chatty me, the me who cared about some things she shouldn’t have before, died a little too.  My soul focus became on finding an answer for our girl that we loved so much, an answer that didn’t involve losing her.  I stopped volunteering at school.  I stopped going out with friends.  I even stopped shopping.  Yes, for those of you who know me, I.stopped.shopping.  Losing all the things that had comprised me before, no matter how shallow they seemed, cost me many relationships.  For the first few months after Tess’s diagnosis, I let it all fall away.  Everyone who wasn’t vital to me fell away. 

 

It will sound so cliché, but the people who mattered, the ones who really knew me, stayed.  Even though I put on a brave face, the people who truly knew me knew that I was falling apart.  They didn’t ask how I was.  They didn’t ask about Tess.  They just brought meals, hugged me, and continued to tell me about all the great sales.  I grieved the loss of the others for about five minutes. 

 

The relationships that involved complaints about my behavior change, the ones that involved criticisms like ‘Becky doesn’t care about her children’s school anymore!’ or ‘Becky is so anti-social lately, she never goes out for drinks’ or ‘Becky doesn’t call ME anymore to ask about ME!’ are the relationships that needed to fall away.  They were also a litmus test upon which all future relationships shall be based. 

If I don’t think the person will ever call to ask me about me, or show up when I need them, then I allow them to fall away.  Sadly, this falling away involved some family members as well.  This too, was surprisingly freeing. 

 

I’ll still chat with everyone.  I still seem like the same extrovert I was before.  But, when it comes to real relationships, our network has shrunk significantly. When it came right down to it though, that doesn’t sadden me at all.  In fact, it prepared us to add two more children with special needs.  It helped us to understand what really matters. 

This. 

 

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This is post ten in the blog series, "Medical Momma Toolkit: Tips, Tricks and Encouragement". 
You can read all the posts here.   

 

 

 

ER Visits and Advocating for Your Child: A Guest Post by Brittan Gotbeter

I am so very grateful to have my friend, Brittan Gotbeter, guest posting for the Medical Momma Toolkit.   This amazing mom and I have become friends over the past year, as we've encouraged each other, answered questions and prayed for each other.  We've both been on a ride with our medically complex girls, and I'm grateful to have a friend who gets the bumps and the triumphs, the hard and the beautiful.  She and I have exchanged many, many messages filled with advice and questions as we've processed through this new world we've stepped into.    Brittan is brave, vulnerable and generous with her encouragement, and is loved by many in our adoption community. 

 

This amazing mom has much hard earned medical wisdom, and I really appreciate her willingness to share some of what she has learned about ER visits and advocating for your child.  She is the mom of four, and is in journeying back to China to add another son to her family. 



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I had been around the ER block a few times before we adopted Molly in 2014. Our children don’t do “easy” things, toxic ingestions, serious cases of croup and more...

Now that we have Molly home though, I do feel as if I have mastered the good ole ER visit.

In early January of 2014, my husband and I embarked on a journey around the world to adopt Molly. Molly was a 2 1/2 year old living in rural China with an unrepaired form of lipomyelomeningocele  (Spinabifida) and a club foot. We had fallen head over heals in love with her, and couldn’t get to her fast enough.  Thankfully, our process was fast and, from start to finish, we had her home in less

then eleven months.

Gotcha day couldn’t have gone any better, and we were off to a great start. We knew pretty quickly her urine smelled awful, and she was leaking urine often, but we didn’t know the full extent of what that meant for some time.  Daily in China we would bath her when she woke up because the smell was so awful.  Her diaper hadn’t leaked at night, but the smell permeated her skin. Even as a seasoned momma of three, I had never seen anything like this.

 

Once home, we hit the ground running with more testing and appointments then I knew was humanly possible. Our first stop to our beloved pediatrician told us what we suspected. Molly had a very serious and drug resistant UTI. On antibiotics we went and it cleared up. A few weeks later another and a few weeks later another, and another, and another, and another! After thorough testing and better understanding of her condition, we came to understand that Molly’s greatest area that is affected is her bowls and bladder. Molly has a neurogenic bladder and bowls, along with reflux in one of her kidneys.

 

We began catheterizing Molly every four hours during the day several months after coming home. In addition, she takes daily meds to relax her bladder and to help prevent these UTIs.  The name of the game became how do we save and protect her kidneys. Cathing is #1, but also we must act quickly when she gets a fever over 102.5. That means that no matter where we are or what we are doing when she hits 102.5, our world stops.  Literature shows that if you start antibiotics within 24 hours of fever with UTI, you can prevent long term kidney damage. Often times kids don’t throw fever with UTI, and if they do it means it’s headed to their kidneys or is already there.

Recently, we had been admitted for a high fever, very sick little girl and awful looking urine. Molly was not only brewing normal old ecoli, but also ESBL that had moved in her kidneys. ESBL is an antibiotic eating ecoli that can be very serious.

After a week in the hospital on Zoysn, she got a PICC line and we came home for 10 days of Merapinum. Shortly after her PICC line was removed, she was 104 again.   Back to the ER we went. Thankfully, we came home. A few weeks later 103, so back we went.

 

When we go to the ER now, I know what we need, and what to say.

 

“Hi, this is Molly and she is slightly complex. Molly has spina bifda and although she does great, she does have some bladder issues, was recently admitted for a week, she has a high fever and we need to get a urine culture going ASAP.”   It’s super helpful to go ahead and tell them what you can. I would also strongly urge you to go to your local children's emergency room.  If possible, try to go to the same place each time. 

 

We have gotten to know our staff there and they know Molly. Most of her records are there and it just makes life easier. This last time though, we had some issues that I want to share in hopes that it will help you when you are in this situation with your little one. Remember how I said we were there a few weeks before, after her PICC was removed? That trip was different. Her urine was clear and her PICC site was red and she was guarding it. That time we swabbed her for the flu, and when that was negative, we drew blood cultures fearing she had a serious infection.

Fast forward to our last time. I told the staff her urine was yucky and we needed to get some urine and a culture asap. That.was.all.we needed. The sweet nurse came in a few minutes later wanting to put a numbing patch on Molly for an IV and blood cultures, as well as swab her for the flu.  I kindly said I didn’t quite understand, and that we only really needed urine as I was sure her urine was infected. The nurse left and returned to say that the resident really wanted to start an IV.

 

At this juncture, I asked her if she could please send the resident in.  We had a nice chat and the resident said to me that she had looked back and this was what they had done for Molly last time. Remember, last time was a different story, a totally different situation. I thanked her for her concern and told her I would be the first to agree to any procedure that Molly truly needed, but that she was asleep on the bed and that last time we blew two veins trying to get an IV,  that she was just admitted a month ago and ended up with a PICC, had spent 40 days at Boston Children's, and that although I appreciated her concern, I try at all costs to protect her from things that she doesn’t need.

 

The urine came back awful ya’ll. Worse then in December when she was admitted. Terrible! Still though my sweet new friend really wanted to swab her for the flu and get cultures! Still, smiling(that's important), I ask her who was coming on at 11pm. Score! One of our favorite doctors who knows Molly well. As soon as she got there she came in to see us and agreed, no flu swab, and no blood cultures. After some antibiotic shots, we were thankfully able to go home that night.

The experience that night got me thinking about new parents and how much trust we put in our medical professionals. Let me say we love our doctors.  Really.love.them. Our surgeon in Boston and our team there are some of our favorite people in the world. With medically complex children we need teams around us who can communicate with us quickly and effectively. Weekdays or

weekends, our team responds when we need them. We are so thankful for the care that Molly receives in Charleston, Boston and St. Louis. Without her amazing team put together of people all over the country, our sweet Molly wouldn’t be where she is today. 

 

Doctors are human though, and each child is different. Trust that you know your child and is something is wrong, speak up!

 

Molly gave us such a run for our money in Boston, and each time I knew before anyone else. The team there grew to trust my thoughts on her condition and we moved forward together to care for her. The same goes for the ER, listen to your intuition. You know your child. If something doesn’t sit quit right, ask for an attending, get a second opinion. You are your child’s advocate, especially these medically complex ones, please don’t be afraid to share your thoughts with those doctors and nurses and tell them exactly what you and your child need.

 

I’ve also learned that whatever momma can do, the better. They need urine, and you're used to cathing your child, so it’s better for momma to do it. Blood pressure cuff on, better if momma straps it on and takes it off.  Molly doesn’t like to wear the hospital gown, no worries, they can lift her shirt to listen to her heart and lungs. Whatever you can do to help the nurses and elevate the fear for your little one, the better.

Remember always that the Lord has called you to be momma and daddy to this little treasure.  Although at times it may seem overwhelming, and like you're just barely surviving, take heart the Lord has gone before you, he has paved the way. He has and will continue to equip you to be the best parents you can for your little one.

May it be at home, school, or the ER you know your child best, please don’t be afraid to ask questions and stand your ground, with a smile on your face, when you feel like something isn’t warranted or if your child needs more.

Lastly, the one thing I always grab before heading into the ER. My car charger and a cube to plug into an outlet. ERs can be near radiology that can drain your battery quickly. Staying in touch via text and social media always helps me to feel connected to the outside world and helps to pass the time. A special lovey or blanket for your little one is a good idea as well.

Here's hoping you don’t have any ER visits in your future, but if you do, I know you are equipped and will do just fine!

 

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This post number eight in the series, "Medical Momma Toolkit: A Tips, Tricks and Encouragement Series".

Day Surgery To Do List: A Medical Momma Mentor Guest Post by Sharon

 

The "Medical Momma Toolkit" continues with a guest post from my sweet friend, Sharon Ankerich .  Our families travelled to China together on adoption trips back in 2011, and I've been holding on hard to her friendship ever since.  Sharon is a mentor to many because of the way she lives her life and the love she gives.  Sharon is the mom of nine and grandmother to a precious baby grandson.  Her love flows, grows and is a joy to watch.  She has a big heart for adoption, and a love of photography, blogging and homeschooling.  Plus, she consistently wins the award for best family photos.

 

 

 

She blogs about her homeschooling at Growing Whole Hearts and about the everyday beauty of big family life at Everything Beautiful.  Her posts must be followed, because when she shares, we all learn something.

 

Sharon is a mentor medical momma.  Her children have/had several medical needs, and is no stranger to surgeries, therapies, meds and specialists. 

 

Today she shares an account of her son's recent day surgery, and provides some tips along the way. 

 

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Today our son was scheduled for day surgery to remove his tonsils and adenoids. He has suffered many rounds of tonsillitis and strep requiring lots trips to the doctor and medications. He also suffers from asthma and snores like a beast. Payne his twin brother who shares a room says- 'I not can even turn him over when him wakes me up with snoring'. So he needs this surgery just as much as Will. Ha!

1.  DO Listen to Your Instincts ~

He wasn't a cut and dry case. We had visited our pediatrician many times with same symptoms, but would always fall right below criteria for further inquiry. I was always understanding and acknowledged their expertise for documentation and timing. 

One day, Will came down with a very high fever, and I mean like 105.7 (Most of my kids run super high fevers, so I didn't freak.), but all the same, he needed to be seen. I called and they brought us in. Diagnosis was tonsillitis and ear infection, and this time I Pressed.

Pediatrician once again reminded me we were under the requirements for an ENT visit, but I wasn't going home without a referral. Sometimes it takes persistence of the momma bear to get the attention needed. Reluctantly, we were given go ahead for ENT, and I made the appointment.

Fast forward to this appointment and when the doctor looked in his mouth... you should have seen his eyes! 

Yep! I KNEW it!

On a scale from 1-4, with 4 being huge tonsils, his was a 4+!!! I remembered back being told this doctor was extremely conservative so not to be surprised if he agreed with them. Okay, I went with an open mind, but I just knew in my gut what the outcome would be. Surgery was scheduled and my boy would get a chance for better health and sleep!

Here we are at the hospital. We were to be here @ 9:30 with surgery at 11:30. That is never a given. Back to a room in plenty of time, but are told surgery is not until 12:30, and we continue to wait. That time passed and finally he was taken back at 1:30. Two hours late, but all is well. 

2. DO Prepare Your Child Carefully~

In our family, we have found less knowledge of procedures is usually better. Will did hear what the doctor said at his appointment, but didn't really understand what it meant for him. In our minds, there was no reason to inform Will of all the details relating to his upcoming procedure. Why give him worry when it was so far away? The girls did enlighten him unbeknownst to us and fear was sparked. Now was the time to help him deal, because even our best thought plans sometimes backfire.

In very simple terms, we explained where we would go and what he would experience comparing it to other procedures someone in our family had undergone. At just the right moment, his sister piped up to tell him he would probably score a really big prize since surgery was involved. We assured him absolutely that would be the case. He bravely announced he wanted the Ninja Turtle Shellraiser. Hmmm... Guess what?

At Christmas I spent lots of time choosing the three gifts each child would receive, and when it came to get everything wrapped, Will's pile was a little bigger than the others. I just happened to have bought that exact Shellraiser and had put it aside for maybe his birthday. Who knew? God did and this accidental gift would become the comfort he would need for surgery day. 

 

3. DO Shift Focus to Something Other than Surgery~

This morning when he woke up super early for a two hour ride to Children's, that Shellraiser was the bomb! His face lit up like it was Christmas and his arms were full the whole ride. My HEART was full because all was right in his world. My little buddy, once full of fear, was a brave little Ninja Turtle totally ready for his big day. Oh, and his brother is right beside him as well. They have cheered each other on through thick and thin from the day Payne came home. 

As Day Surgery Comes to an End~

I'm sitting in his room right now as they have just rolled him away. All I can do is write this post and pray over him because I've done my part in my momma strength. I've fought for an appointment and surgery. I've gotten him to the hospital with his prize toy. I've relinquished him to super capable hands. I've watched him wheel away with arms wrapped around his Ninja Turtle Shellraiser.  I KNOW it was all right and pray for healing and recovery, knowing full well that's not a given either. Nothing in this life is. 

I just saw the doctor walk by this room talking on his phone and my heart leaps into my chest. I know my child lies in recovery facing many days of pain and recovery. Hurry up! I need to hear. I think he's stepping in. 

First and most coveted words out of a doctor's mouth, "He made it through fine." Praise! 

Next words, "His tonsils were a MONSTER!" Yep! Told ya!!! 

After a bunch of stuff I may have heard and will process later, the doctor left and  I sat alone in the dark while tears of relief flowed. Fears released, after so much strength required, had waited for just the right time. Scott and Payne walked around the corner from lunch and I put them at ease. He's fine. 

 

He just rolled back into the room from recovery and is our Super Will with the high pain tolerance. They told us we would be here 4-6 hours until he had had something to drink. I knew he would drink in the first five minutes, and he did. He actually woofed down a popsicle and a juice box sitting up watching TV!  Nurses keep coming by commenting how well he is doing. 

I'm thankful for that, but I also know it's all a façade. He isn't doing well. He's just dealing with this, another major hurt he has to endure. Only this time, he has his momma and daddy right by him. And I mean my chair is touching his bed and I'm leaned over the rail loving him big. Helping him know it's okay to say he hurts and be moody. It's well deserved in SO many ways. Pitch a fit sweet boy! Momma's got your little Ninja Turtle self today and forever!!!

 

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This is post four in a the series, "Medical Momma Toolkit: A Tips, Tricks and Encouragement Series."  

 

Courage, dear hearts.  I hope you have been encouraged.