RSS

Tag Archives: Spina Bifida

Days of Battle

In my last post, I touched on trying to find the balance between abling and enabling. Most parents I know are also in this struggle. Just because our situation includes some medical diagnoses and a daily routine that looks different than the “norm” doesn’t mean the principles of operation are that different.

It doesn’t matter if your future includes a wheelchair or not, in this life you have to focus on what you CAN do.

received_10207729680670690

Yes, this is my little guy vacuuming while in his wheelchair.

I’m sure many of you are wondering how the appointment with the neurosurgeon went, it went pretty much as we expected. We scheduled another 2-3 hour MRI for next week. Garrett managed to do one of these back in May without sedation and we’re opting to try that again this time because it gets us in almost 3 weeks earlier than if he needed it. It’s hard for anyone to remain still for that long, but our children’s hospital does an amazing job of working with the kids and setting them up for success. He will be able to watch a movie during the MRI. It’s moments like this I am thankful he completely zones out when you put a screen in front of his face.

In addition, the doctor said that pushing Garrett physically would not damage anything neurologically, and instructed me to push him for everything he’s got.

This is where I can’t help but acknowledge the goodness of God and His Sovereignty. I’m thankful for many of those around us for calling it out as well. I’ve walked through difficult medical situations before, both advocating for another and for myself. My education and work experience as a massage therapist and wellness partner has prepared me uniquely. Many of my passions come together to serve Garrett in this life.

We left the doctors office and I took him to lunch. We had a “come to Jesus” talk.

In many ways, Garrett is innocent, naive, and gullible. When it comes to medical situations and similar, he’s mature beyond his years. I explained we needed to push and work to make any gains possible if we wanted to get him back on his feet.

“We’re going to get mad at each other, we’re going to cry, and we’re both going to be exhausted,” I said.

The downside is there’s a big chance that this pushing won’t get us where we want to be. The neurosurgeon suspects that the area of nerves he was unable to dissect from scar tissue during the last surgery is what is causing the problems.

Right now it feels like we have to fight with everything that we have between now and our follow up with the neurosurgeon in 2 weeks.

I’ve always looked at expanding my knowledge about the body and learning techniques for healing as adding tools to my toolbox. That toolbox just morphed into an arsenal.

I said to the LORD, “You are my God; Give ear, O LORD, to the voice of my supplications. “O GOD the Lord, the strength of my salvation, You have covered my head in the day of battle.” Psalm 140:6-7

 
Leave a comment

Posted by on October 30, 2015 in Faith, Family

 

Tags: , ,

In the Dark

In the Dark

Yesterday was a hard day. My eyes popped open at 5:00 am. There’s not much I love and enjoy more than sleep. I’ve learned, though, that during hard seasons this is what God does. He wakes me up before the sun, prompting me to lay my burdens down before His Son. I need time to assess, process, and release my emotions simply to be able to function.

It looks different from day to day. Sometimes I feel it all bubbling up and I know I have to get out of the house. I lace up my shoes and run it out. Sometimes it’s sitting soaking the quiet of the world in, steeping in scripture, and writing in my journal. Occasionally, it’s a blog post.

The fact is, it’s easier to function and be level with all that goes on in Garrett’s day when I do this. Even when I do these things there are days when I can feel it all ready to break over, but I try not to let him see the flood. That’s not to say he doesn’t see me get emotional, he does. But I know my boys, and experiencing mommy do the ugly cry, would only bring them worry.

Thankfully, I do have plenty of people who are a safe place for the ugly cry. Many who carry me with prayers.

The writing helps because I’m a verbal processor. If I’m thinking it or feeling it, I need to get it out, get it down. If I don’t it just rolls around in my mind becoming bigger and scarier than it really is. If I can hear myself say it or read it, it’s easier to combat it with Truth.

The running helps my body rid itself of the stress and energetic build up of emotions. It’s also cheap.

Garrett slept with us, his legs frequently spasming throughout the night. I hadn’t realized this had begun. Things are moving pretty fast. It seems as soon as I hit publish on the last post, we decided it was time to bring the wheelchair into the house. He’s barely able to stand with the walker.

Even though I was up early, it wasn’t a good day to go run. Bob had been out late at the neighbors watching and celebrating the Royals WIN!! I wasn’t confident he’d wake easily if Garrett needed something. But I could feel the threat of not just a flood, but a storm. I sent an SOS text to a dear friend. “I know this is a lot to ask, but G isn’t doing very well and I’m having a hard time holding it together. I really need to punch and kick some stuff in an empty gym.”  The response was “What time?”

I punched and kicked and cried and yelled and listened to loud angry music for almost an hour.

Then I came home, showered and snuggled with the little guy on the couch.

I wasn’t really sure what had brought it all on, but when I was done I was grateful that the tears weren’t constantly threatening to spill over. Before I knew it, it was time to get him ready for bed. Often by this time of the day I’m done, wore out and worn down, and Daddy jumps in. For whatever reason, I wanted to do it. He soaked in the tub for a while with epsom salts and essential oils. He kept asking me to do stuff for him. Yes, he definitely tries to manipulate the situation when he can. There are lots of things he needs help with and the number is growing, but I’m pretty hard about making him do for himself as much as he can. When he was done washing, I instructed him from the other room to get out and dry off. I had everything set up the way he needed. I heard him try to get out, but he slipped. He tried again and couldn’t. He yelled for me to come help, his voice breaking.

When I enter he says, “I’m trying to get out, but I keep slipping. I even bonked my head on the faucet.” We try again, together, but he doesn’t have enough control or strength in his legs to get traction and I pretty much lift him out. I thank God I can because there was a time when I couldn’t. I set him on his stool and wrap him in his towel. I tell him to dry himself off. He asks me to, but I push back. HE HAS TO DO WHAT HE CAN FOR HIMSELF.

As he begins to dry off he says, “I don’t know why my legs are doing this.” I’m not sure I hear him correctly and squat down to his eye level, “what baby?” He repeats it and his face breaks. He buries his head in my neck.

This is why I felt the flood earlier, this is why I was prompted to go punch and kick some things. FOR THIS MOMENT.

Yes, tears spilled down both of our cheeks, but I was able to control myself and maintain composure. In that moment, I had the power to be what he needed me to be, strong, stable, and truthful.

There is a lot we won’t find answers to this side of heaven. But I’ve seen and felt enough to know that God is good. God created all of us uniquely and for a purpose. It’s ok to be angry or sad about our circumstances, but we have every reason to believe the plan is for good. When we find ourselves in the pit, repeating what we know is true gives us a firm place to stand.

For you created my inmost being;
    you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be. Psalm 139:13-16

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. Jeremiah 29:11-13

The plan is working. We’re seeking Jesus with all our heart. Our every hope is in Him. We feel His love through the many who are praying and loving us through right now.

 
2 Comments

Posted by on October 25, 2015 in Faith, Family

 

Tags: ,

The Gap

The Gap

Quite some time has passed since my last post and much life has been lived in the gap. The reality is, life is so full I don’t often make the time to write formally here, even though it really does bless me to do so.

See the last grouping of posts were written either during the dysfunction or during the resting portion of recovery from surgery. The truth is that we’ve been up to our eyeballs fighting our way back.

Garrett underwent spinal cord de-tethering surgery on 6/20/15. Someday, I will write that day’s post, I promise. One thing’s for sure when you’re headed into a surgery like that, after witnessing your child live in pain, you’re ready to truly surrender the whole thing. It has long ceased to be about you and what you want, what dreamed for your child’s future and definitely not about easing your pain and exhaustion. You’ve reached the end of your rope and there’s nothing left for you to do. You enter into the moment willing to accept whatever outcome, you just hope and pray the pain will be gone.

Our neurosurgeon asked us to proclaim our medical priorities for Garrett and it was pretty easy to say 1. organ health, 2. Pain-free 3. Mobility. He indicated that exactly what I suspected was going on was, stress on the spinal cord due to tethering and scar tissue, and that this surgery would be the only way to medically treat Garrett.

20150620_09305620150619_142703 10351528_10206802089881500_901630766727508285_n10171235_10206796651225537_4739258962706784886_n11295917_10206821955298123_2808080204963826439_n20150821_11230220150730_09481420150819_101843

Like I said earlier, since surgery we’ve been working hard to heal and come back strong. Garrett’s been working hard with a really great physical therapist and he was making great progress!  Just a few weeks ago, it looked like he might even get released from PT early. Then things started going the other way. Garrett started regressing. His balance got worse, his legs were weaker, and he fatigue began hitting him sooner. The PT and I both had the scary thoughts cross our minds, but we also knew that Garrett was experiencing a growth spurt and hoped that was the cause. The PT ran Garrett through a lot of assessments of strength, flexibility, balance, and reflexes and recorded the results. The next week he did the same and in addition to marked changes in the results, there were stronger indications of neurologic stress/dysfunction. In one look across the room, he communicated everything and I struggled to hold it together.

Again we’re in the space of the unknown. We suspect there’s something going on with his spinal cord again.

We cut the appointment short so that we could both call the neurosurgeon and request Garrett be seen as quickly as possible.

That was 10/12/15. The soonest they could get us in was 10/28/15 and they added us to the list of to call if there is a cancellation. They instructed us, of course, to go to urgent care or the ER if symptoms became severe and unmanageable.

We haven’t said much to many people, we’ve been processing and coming to terms with it. I just told my siblings yesterday.

Over the last week, there’s been an even greater decline. He’s using a walker around the house, and a wheelchair when we’re out and about. However, being on his feet at all is becoming increasingly painful and unsafe.

We share this all now because the weight of it is getting heavy and we remember well how so many around us shared the burden with us last time. We would appreciate your prayers to help lift us up and carry us through again.

 
1 Comment

Posted by on October 23, 2015 in Faith, Family

 

Tags: , ,

What do you expect?

6/2/15

Neurosurgery clinic called today. The doctor returned, reviewed Garrett’s file, and would like to see us tomorrow. Yes, tomorrow.

*This should have been my first clue, but I missed it.

6/3/15

As my husband is getting ready for work, he asks if I’m sure I don’t need him to go with us today.

Since Garrett has gotten older and can entertain himself play on the iPad independently, we typically conserve Bob’s paid time off/sick/vacation for when we absolutely have to use it or can truly enjoy it. I’ve been doing the kids appointments solo for quite some time, and almost prefer it that way.  It’s just easier for me to concentrate on getting one vehicle to the right destination on time than two. I know you get it.

I assure him I will be fine, but if he feels better going then he can come.

Do you and your husband do this?  Volley the question back and forth trying to be sensitive to the others needs and feelings, and both of you end up kinda exasperated about the whole thing? Yeah, that.

Bob poses the final question. “What do you expect to happen at the appointment?”

*This should have been clue number two.

Because our neurosurgeon is so conservative.

Because we’ve been down this road before.

Especially because the MRI wasn’t showing the “typical” indicators.

“He’s going to look at me, laugh, tell me how blessed we are to have such a high functioning SB kiddo and refer me to ortho and physical therapy.”

Keep in mind, all this time we’ve been praying, our people, and our church have all been praying.  Yes, sweet hand clasped prayers for healing and strength. But also feet hitting the pavement, running prayers of salty sweat and tears. Gut wrenching, sobbing prayers in the shower. Hours and hours of reading and praying God’s promises over every aspect of the situation.

For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland. Isaiah 43:19 NLT

The light shines in the darkness, and the darkness has not overcome it. John 1:5 NIV

This is my command–be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go. Joshua 1:9 NLT

forest_path_denmark

And God did make a path in our wilderness. Light shined in our darkness, and it did not overcome. And the Lord encouraged us and proved He was with us through all the love, support, and prayers of others.

The doctor, in no uncertain terms, indicated surgery to untether Garrett’s spinal cord was the best preventative and hopefully restorative action step.

What do you expect?

We expected God to show up. We didn’t know how, when, or what it would look like, we just waited expectantly and continue to do so.

 
Leave a comment

Posted by on July 2, 2015 in Faith, Family

 

Tags: ,

Team Meeting

Team Meeting

5/20/15

Spina Bifida Clinic

Since birth Garrett has been seen by a team of doctors at least annually, but usually bi-annually to stay on top of his health and wellness. The team consists of a neurosurgeon, orthopedic surgeon, urologist, rehab med doc, physical therapist, pediatrician, nutritionist, and specialized nurse practitioners. The majority of this team have remained the same all these years, I feel they all are very passionate about what they do and truly care for Garrett and our family as a whole.

The clinic set up is great. All of the patient rooms are in a square and the kids frequently end up in the hallway, which is carpeted to look like a road, playing with one another. Many of the kids we see there also attend the same Spina Bifida summer camp. Because of this, clinic is not something we dread but look forward to.

Garrett and his buddy at Spina Bifida camp

Garrett and his buddy at Spina Bifida camp summer 2014

Today everyone examined and reviewed Garrett’s signs and symptoms, putting their heads together to determine what exactly is going on. Timing was a bit off, as our neurosurgeon is not here, but on mission somewhere in Africa (I think). We left with an order for ongoing physical therapy and assurance that the team would communicate the concerns with the neuro as soon as possible upon his return.

 
Leave a comment

Posted by on July 2, 2015 in Faith, Family

 

Tags: ,

Day of Dawning

Day of Dawning

I’m a writer. I process and cope by writing.  Even though I, obviously, haven’t been posting here on the blog, I’ve still been writing. A few near and dear to me have asked, prompted, and encouraged me to get back to posting. The entry below was originally written  on April 22, 2015. I will be posting a few more entries to fill in the gaps, but wanted to let you know in two days we are heading into the operating room.

April 22, 2015

Garrett woke up around 2 or so, bad dream. He was extra whiny so hubby let him crawl in bed with us. An hour and a half later, he’s up crying because his head hurts so bad. I run to the kitchen to get some ibuprofen and upon my return Garrett says he needs to use the bathroom. I check and his diaper is full, unusual for him. We catheterize him every 3-4 hours during the day, but if we cathe right before bed, he’s typically dry all night.

“Let’s cathe Boo,” I say. I get the stuff ready and began emptying his bladder. He’s whining and crying, his head hurts and his tummy hurts. I finish up, put a dry diaper on him and his “cover up” underwear, but he can barely stand and walk back to bed.

“Can you carry me?” He cries. His right leg looks very weak and it’s struggling to support him. He’s so big now I can’t just swing him up like I used to, but I lift him anyway. We manage the short distance to my bed. There, I begin to put his legs back into the pajama pants. His right leg is spasming from toes to mid-thigh. I recognize the rhythm of the spasm as having a “clonus” feel. He settles in as close to me as he can manage to get, moaning from discomfort. After 30 minutes or so the meds kick in and he falls asleep, but my mind continues to spin.

Garrett was born with Spina Bifida, hydrocephalus, and a few other diagnosis for good measure. In his 10 years, he’s had 8 surgeries, ranging from the removal of his tonsils and adenoids to brain surgery. The above episode lead to a PJ day on the couch for him and while I held him, cared for him, and prayed for him, I started making a mental list of some changes Garrett has presented in the last few months. The concern grew. Sure, I could explain them all reasonably individually, but cumulatively it was unsettling. I had previously made notes to bring some of it up to his doctors during his bi-annual clinic appointment just a few weeks away, nothing seemed too urgent. Maybe even this most recent episode was no big deal. We’d continue to monitor and discuss at the upcoming appointment. However, I couldn’t shake the feeling that it might be a bigger issue. It was Wednesday, which I know to be a typical spina bifida clinic day. So, I called to chat with the clinic nurse coordinator, maybe we could get a couple of diagnostic tests in before our clinic date. It certainly had been a while since any tests were run to look at him neurologically.

Years back (2009) Garrett presented with some signs and symptoms that made me certain something was wrong. At that time, he was a year or so post-op from corrective surgery on both his feet. I noticed a decrease in his foot sensation and movement, particularly his right side. To me, it seemed most logical to call his orthopedic surgeon. Upon examination, the doctor told me he suspected a neurological problem. He detailed the reasoning why, one of which being an increase “clonus” pulse in his right foot during a routine reflex type test. He recommended we see Garrett’s neurosurgeon for further evaluation and testing.

Before I proceed, I’d like to preface by saying that our family thinks the world of Garrett’s neurosurgeon. Immediately after Garrett was born this man performed miracle surgery to close the open lesion of Garrett’s back and spinal cord. His approach with Garrett and with us, at that time, was gentle and patient. He gave Garrett, his body, and God the opportunity and space to correct the minimal hydrocephalus he had at birth before recommending we intervene surgically. At every follow-up, routine check-up, and interaction, I felt he and his nurse practitioners held a special affinity for my son.  Also, keep in mind, Garrett deals with few of the many possible life strains that can occur with spina bifida. Many who don’t know, can’t tell anything is different simply by looking or interacting with him.

After the neurosurgeon examined Garrett, he looked at us and chuckled. He said there was nothing wrong, not only did he think everything was normal, but expressed how lucky he thought we were to have such a high functioning sb child. The symptoms continued to worsen and I continued to call on the doctors that were listening to me and shared my concern. The orthopedic surgeon ordered long-term physical therapy in hopes that professional documentation would help convince the neurosurgeon to order some tests. It didn’t and Garrett continued to decline. Granted  the declination was minimal, it was noticeable, and when it’s your child, it feels magnanimous. After consulting with Garrett’s rehabilitation med doctor, the ortho ordered an MRI on Garrett’s brain and spinal cord. The test indicated that Garrett’s spinal cord was tethered, or attached to his spine, and due to growth was under duress from being stretched. If left untreated the physiological dysfunction would continue to worsen.

Commonly in persons with spina bifida, there is also a condition of a neurogenic bladder and bowels. In my terms, this means that they don’t function normally. There is often a decrease in the sensation of needing to empty resulting in incontinence, along with decreased capacity, spasms, and overall function. A tethered cord can cause this to worsen permanently.

As with any surgery, there are risks. Surgery on the spinal cord has some high ones. In spite of operating in hopes of correction and improvement, the patient can end up worse off and even paralyzed. We elected to have the surgery and had great results, largely due to the giftedness of the neurosurgeon.

My conversation with the clinic coordinator affirmed my instincts to call. She took the information I gave her to the rehab med doc and the clinic nurse practitioner and soon called me back to schedule an MRI. We were given two options for the 2-hour long test. There was availability the next Wednesday for an unsedated test or almost two months away if sedation would be necessary.

Ugh! I’m not sure any 10-year-old boy alive wouldn’t struggle to stay perfectly still for 2 hours without sedation. But for my son, it’s going to require divine intervention. On top of all of the above, Garrett also carries a diagnosis of ADHD and an anxiety disorder. He doesn’t just constantly move and have trouble focusing for longer periods of time when anxious he picks and chews his fingernails as a coping mechanism. However difficult I suspect this to be for him, we need information sooner rather than later.

I went ahead and scheduled him for the MRI next Wednesday and in the time we have leading up to the test, I will do everything I can to prepare my son to do well. We are talking about it, watching youtube videos of what an MRI machine looks and sounds like, and the importance of the information clear test results will provide. Ultimately though we’re praying. We’re constantly praying, when we’re alone, when we’re together, silent prayers, and out loud prayers.  We’re praying empowering words over him and we’re praying God’s word over him.

For God did not give us a spirit of fear, but of power, love, and self-control. 2 Timothy 1:7

For anyone interested in learning more about Spina Bifida please visit http://www.spinabifidaassociation.org

 
2 Comments

Posted by on June 17, 2015 in Blogging, Faith, Family

 

Tags: , , ,

Scars

There he found a man named Aeneas, who was paralyzed and had been bedridden for eight years.  “Aeneas,” Peter said to him, “Jesus Christ heals you. Get up and roll up your mat.” Immediately Aeneas got up.  All those who lived in Lydda and Sharon saw him and turned to the Lord. -Acts 9:33-35 (TNIV)

Almost 7 years ago I walked into an operating room, sat on the edge of the table while they stuck a needle in my spine, and allowed myself to be strapped down.  Even though I knew this day was coming, the day had arrived earlier than expected.  Once the anesthesiologist helped me control my nausea, they proceeded to cut open my abdomen and pull out my son.  We held hands for the first time with more than just our insides exposed.  I fell in love this time just as fully as I had before, but with only an instant to savor it.  Then we were separated so our individual teams of doctors could care for us.  With in an hour I was recovering, having been sewn back together, and he was on his way to get the same.

Our bodies forever marked by that day.  Scars that remind us of the miracles that come from thanksgiving.  Thanks for allowing conception, life, and love.  Scars that marked all of our hearts that as a family we are forever thankful for.

Jesus, we all have scars.  Some may still cause pain and remind us continually of every battle you have delivered us through.  I praise your deliverance.  I have scars that are in need of further healing.  Please heal me.  I love you. Amen.

 
Leave a comment

Posted by on February 1, 2012 in Faith, Family

 

Tags: , , , ,

 
%d bloggers like this: