Surgery for Adria

"Mom, you shouldn't have surgery. It's really boring," Adria said tonight while lying on the couch.

Sit as little as possible and lie down at home for almost a week. No swimming for 2 weeks. No sports for 4 weeks. That's the doctor's orders after Adria's surgery on Friday. It's not ideal for our little seven year old, who's disappointed to be missing a week of fun at the end of the school year, but we are so thankful she's doing great!

At home Adria has not been in pain and seems to be recovering well, but she needs to limit her activity and time sitting for her body to heal properly. Especially considering, the doctors encountered a little surprise during her surgery.

She has been pretty fortunate when compared to many children with spina bifida, as this is the first surgery she's had since she was only six months old. But now she is old enough to be aware and apprehensive of what's involved with "surgery."

Johanna and Adria painting picture frames. Trying to find fun things to do while lying down can be tricky,
but we are trying to keep Adria still this week to allow her body time to heal after surgery.

Why did she need surgery?

You are probably asking this question (especially if you missed the recent post Steps Forward...and Back).

I'll try to summarize without getting too detailed. Adria lacks sensation on some areas of her bottom and feet, and early this year she developed a sore that became an open wound in the high pressure area where she sits. We've been treating it daily and seeing doctors for months, but it simply would not heal.

Finally, the plastic surgeon said it was time to stitch it closed. She had wanted to give it time to heal naturally, because with stitches, there's still a risk it could open again and possibly be worse.
Thankfully, the wound had never gotten infected. Yet, after almost four months, it was time to take action.

For the average person, this wound would be very painful. But this type of wound does not usually develop because we feel pain when the pressure gets too much, and we adjust our sitting position accordingly. Adria lacks the nerve endings to give her these cues, thus leading to this problem on her bottom.

Telling Adria

We did not tell Adria about the surgery until a few nights before Friday. She likes to know what is happening, but we knew she would be anxious about it, so we waited.

Those two nights before, she was pretty weepy and nervous. I think it was more the fear of the unknown and being in a room without us. The hospital had a helpful video for children to watch in preparation for surgery, but Adria was still afraid. Thankfully, she was still able to rest well and be distracted at school.

Surgery Day Surprise

We did it. We woke up at 4:30 a.m. on Friday and made it out the door around 5:30 a.m. That's kind of amazing for us.

Adrian and I headed north to A.I. duPont Hospital for Children with Adria. Johanna and Judah woke up early with the commotion, but stayed home under the watchful care of Adrian's mom.

The children's hospital really does a great job of putting children and parents at ease. Adria got her arm bands, and they even gave one to her special bear friend Foo-Foo! She loved on that bear and her turtle friend Celia, who both went back to surgery with her, while mommy and daddy waited outside.

Adria smiles just a few minutes before going back with the anesthesia team.
Her "babies" Foo-Foo and Celia were great comfort to her.

Adria and her babies.

The pre-op area was a buzz of activity with dozens in blue scrubs milling about. There were many questions and vitals taken before Adria went back for the anesthesia. They gave her some calming medicine before they took her back and next thing I knew, her eyes were droopy and distant. I think that's the last thing she remembered until we saw her again about 2 hours later.

Waiting is tough. You know your child is being operated on and you just wait. They have a screen with colors and codes for you to follow your child's general progress, but you'll go crazy if you stare at it too long. We had a nice interruption during our wait, as a friend just happened to be up there for an appointment with her son at the same time.

Surgery started around 9 a.m. A lady gave us an update halfway through, then sometime after 10:30 a.m. the plastic surgeon came out to talk.

It was finished! Adria was doing good but still needed time to come out of anesthesia.

The surgeon explained that while operating, they found that Adria's tailbone was just under the skin where the wound had occurred. That helped explain why the wound struggled to heal, because of the extreme pressure from the unusual angle of her tailbone. So they removed it!

She said it was about an inch of bone that was non-essential for Adria and would not be missed. It should also help prevent this issue from happening again.

Adria no longer has a tailbone!

That was our surprise, but it seems like it's no big deal. Her tailbone was at a much different angle than normal, so it caused more harm than good.

Recovery

We went back to the PACU (Pediatric Anesthesia Care Unit) to be with Adria while she continued to come out of anesthesia. Poor thing was so dazed and sleepy for a while. It upset her. Even the blue raspberry ICEE slushy they gave her did not help much. She was very surprised to realize that the surgery had already happened and almost disappointed that she did not remember it. Silly girl.

She lie in the hospital bed with an IV in her arm cuddling her Foo-Foo. For a minute, my imagination took over and fast-forwarded 20 years and thought of seeing her in a bed cuddling a newborn baby. That was weird. And kind of emotional.

Around noon, Adria was improving enough to be discharged and put in her wheelchair. She was able to eat some lunch before we headed home.

We THANK everyone who prayed for her and showed support through text messages and Facebook love!!! Adria appreciated reading the messages with me before and after her surgery.

She even got a surprise package in the mail from her school nurse this weekend! It held some activity books to help keep her occupied during this "boring" recovery period.

We are so thankful she is recovering well!

Still hoping for answers...for an End

We are still hoping for answers. Still hoping for an end to Adrian's seizures.

It has been a while since we shared about seizures and epilepsy. We wish that were because nothing has happened, that things are "normal"...

The truth is, Adrian has had a couple more seizures since we shared about the one that happened at Panera Bread last June. Once at the airport while on his way to visit his sister in Texas last fall. Once just before bedtime at home early this year. That one and the post-seizure psychosis was very intense, but we had a neighbor and family come to help.

Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.

Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!

These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.

But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.

Adrian is now trying his 5th medication in 6 years....

Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.

So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?

We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.

They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.

The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.

On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.

On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.

At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.

For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.

In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.

It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.

Adrian and I out for a date nigh last week. I can't tell you how much I appreciate this man and all he does for our family, especially while facing daily health-related challenges.

Steps Forward...and Back

Adria giggled loudly in halls of A.I. duPont Hospital for Children last Tuesday. She was watching a video of herself from over three years ago, where she was walking along in her braces wearing just a diaper.

"Hahaha, I just love my cute, chubby self!" she giggled, much to the amusement of her orthopedic doctor, physical therapists and her parents.

The video was filmed in the Gait Lab of the hospital, where they film children "ambulating" who have an abnormal gait. Adria's first video was made when she was three years old and had just learned to walk without her walker! It was really cute and touching to watch that video again.

Adria walking without her braces in the Gait Lab last Tuesday

NEW LEG BRACES = GOOD AND BAD

The doctors were looking at the video to compare how she's walking now. She recently got a new pair of leg braces (Ankle Foot Orthotics) that we were so pleased with at first. They are stronger than her last pair, which we had several issues with - they cracked because of her active lifestyle and she often complained of pain in her legs, However, Adria is struggling more with balance and running in her new leg braces.

Her physical therapist from school especially noted the difference. Adria had been making good progress in ascending and descending a few steps without holding onto the rail (yeah!), but now she has regressed and is struggling with some skills and balance.

The doctors at AI believe that the setbacks are due to Adria adjusting to the difference with the new braces and that in time she will regain her former abilities and continue to grow.  They think she looks great!

Adria's orthopedic doctor and physician's assistant check out her hips and legs.

They did suggest that it could be beneficial for us to get her some "Walk-Easy" crutches to use when walking longer distances, such as hikes through the woods. It's another good option for her to try and stay as active as possible, then just using her wheelchair for big outings like the Zoo or amusement parks. So, we'll look into those crutches more this summer.

Adria did get to go back down to the Gait Lab with the yellow "road" and land of Oz mural and take a new video. She rocked it, walking and running with and without her braces! It's just amazing to watch her progress.

UPCOMING SURGERY

We had another doctor to see on Tuesday as well. The pediatric plastic surgeon.

This doctor is new to us, as Adria has developed a surprising, new issue in recent months. She basically has bed sore/wound on her bottom and the stubborn thing will not heal!

Since February, I've been applying prescribed ointments and dressings daily. It's stayed clean and uninfected, but it simply will not close up and heal on its own.

The reason she got this in the first place is somewhat mystifying, but it has to do with the fact that she has limited sensation on her bottom. When at school, she would sit in a hard chair for prolonged periods of time without adjusting her position and a sore developed.

This would not happen to the average person because we would feel pain or discomfort from too much pressure in the same spot and simply shift in our seat. But Adria does not have some of those nerve endings because that lower part of her spinal cord never formed properly in my womb.

It's one of the impacts of Spina Bifida that we did not account for, but ever since this happened, she's had a nice soft cushion on her seat at school and her wonderful teachers make sure she gets frequent breaks.

But last week the doctor said it's time to take a more proactive approach in the healing of this wound. It needs to be closed surgically...

I did appreciate that the plastic surgeon used very vague language when talking to us about this with Adria in the room. Adria gets easily upset about needles, pain, and likely would have freaked out if she really knew what's going to happen next Friday. It will be an out-patient surgery but will require anesthesia.

After the surgery, Adria is NOT supposed to SIT for a WEEK!

She can walk some but will be restricted to lying on her stomach and side most of the time to allow for complete healing. She is totally going to miss school that week, but they did not want us to wait until school lets out - the surgery schedule is already full in June.

Yesterday, I got a called from the hospital reviewing Adria's health history and asking tons of questions in preparation for next Friday's surgery. The lady even recommended a video that the hospital has made to help parents and children know what to expect. It's really helpful actually. Here it is:





This will be the only the third surgery that Adria has had. I say ONLY because many children with Spina Bifida have had more than a dozen surgeries by her age! But Adria was only six months old for her last surgery...which was a much more intense procedure. It was literally surgery on her Brain. She was only the 8th child in the U.S. to have this operation that provided an alternative to the Shunt, commonly used to treat Hydrocephalus. Read about it HERE.

We are believing this upcoming surgery will be a simple procedure and she'll come home with us that same day.

Honestly, I've only explained this whole thing a little bit to Adria. She would be too upset if she knew the full extent of what's going to happen.

SO PLEASE DON'T SAY TOO MUCH TO ADRIA ABOUT THIS SURGERY. Thank you.
Just say an extra prayer for her on May 27.

EXCITING TIMES

You can't keep this girl down, though. She's got a couple of events before the surgery.

This Saturday, Adria's hoping to participate in her second Spelling Bee - she won Third Place in her first one a couple months ago!

And next week she has a Girl Scouts awards program. She joined a Girl Scout troop at her school this year and sold more than 100 boxes of cookies this spring. She's got some great natural sales skills (like her mama :)

Perhaps most exciting is the fact that Adria just started being able to Catheterize herself!! 

This is a huge step in independence for her. She's been afraid to try for so long, but I told her that if she wanted to try any Day Camps this summer she would have to learn to take care of herself. Apparently that was motivating for our social butterfly, and a few weeks ago she did it on her own for the first time! She's been getting more used to it since and is pleased with her new ability.

We are so thankful for Adria and her great progress forward, in spite of her challenges. She sometimes says, "Mom, I wish I wasn't a spina bifida person."  It's tough to hear this and know how to respond, but she's got a great spirit and we pray she'll always keep her sense of determination.

And always keep taking steps forward, even if she has set-backs from time to time.

Mommy feeling blessed with her babies on Mother's Day!

Thank you, Teachers

I just need to take a few minutes to say Thank You.

Many times throughout this year and last, I have been incredibly thankful for the kind, supportive teachers my daughters have at school. Teacher Appreciation Week gives me some extra motivation to share just how much they mean to me. (But of course, I got busy at work this week and am just a tad late sharing this.)

These teachers are creating an environment that's enabling our children to grow and excel. Both of our daughters attend the local public school, and we have been very pleased with the teachers and the administration. It's a new experience to us, as Adrian was always home-schooled and I only attended private, Christian schools along with being home-schooled for five years. We both received a good education, yet are thankful for great teachers who make public school a good option for our family.

ADRIA

As Adria nears the end of First Grade, I am so thrilled with her progress in learning. She is reading age appropriate books very well, requiring only occasional assistance with words, and her math comprehension is impressive. Just yesterday, we realized she forgot to do her homework, so she did her math problems on the way to school...it's only a 10 minute drive and 4 minutes down the road, she was finished! She has earned straight A's all year, receiving the Distinguished Honor Roll each quarter. Woohoo!!

Adria's recent First Grade Portrait, age 7 - photo by Lifetouch

And so much credit goes to her amazing teachers - both from Kindergarten and this year. Adria is in a classroom with two experienced teachers, and they have been wonderful. Mrs. Hastings just loves Adria's wit and often shares with me funny things she says or sweet things she does. She knows how to encourage her strengths and minimize her weaknesses.

Like that time on a class trip when they were playing relay games. Mrs. Hastings subtly made Adria's group two people fewer than the others...not so they could win, but so Adria's team could finish their relay around the same time as the others. Adria can't run as fast as other first graders, due to her spina bifida and leg braces, so it slowed her team down, but she gave her best and her team finished with the others!

Then there was the day I totally missed the Honor Roll Assembly. and Mrs. Hastings sent me pictures of Adria prancing across the stage. Adria was disappointed I didn't make it, but glad I could see her pose as she was recognized for her accomplishment.

Mrs. Hastings even sent me a note earlier in the year saying such kind things about Adria, like "Her intuitiveness about how others might be feeling is just awesome and her desire to make them feel good about themselves is just too much."

Adria's first grade class in December - Mrs. Clough on left and Mrs. Hastings on right in rear

And  of course Mrs. Clough who is Adria's walking buddy every day at noon when they go to the school nurse, Mrs. Lord, who helps Adria with her special potty needs. Mrs. Clough always seems to be in a good mood and attentive to each child's unique personality in the class. Adria missed her so much when she was on vacation recently.

JOHANNA

Johanna started pre-school in the fall knowing most her colors and some numbers, but really struggling with shapes and letters. Now, she's got her shapes down, easily counts to 20 and beyond when prompted, and recognizes many letters. She can spell her name and write with some help. And she colors inside the lines much better :) She loves Art and Dramatic play at pre-school.

Johanna's recent preschool portrait, age 4 - photo by Lifetouch

Her teachers are so full of energy and perfect for their job. They manage a room full of three and four year olds without ever seeming to lose patience and keep them entertained and learning. Even though Johanna is in a class full of 13 boys with just one other girl, her teachers make sure there are plenty of activities she enjoys and embraces with all her friends.

Johanna often talks about her teachers and how much fun she has at preschool. Just tonight she said, "Mom, I love Mrs. Mingo. And I love Mrs. Hill too!"  Her teacher's name is really Mrs. Mozingo, but it's kind of adorable how she calls her "Miss Mingo" most of the time.

Johanna's preschool class at a recent trip to the Fire Hall - Mrs. Mozingo on left and Mrs. Hill on the right
Note the 2 little girls and ALL the boys!

In addition to their teachers, I have been impressed with the school administration at the local public school. I don't know how many hundred pre-school through second grade students attend there, but it's a A LOT. The staff call the children by name when they see them in the halls, encouraging them and challenging them to have good behaviors.

I visit when possible for Adria's lunch time, assemblies, class trips and other special events. It seems to be such a good, positive environment. I know I don't seem all the day to day drama with the children and parents, but what I do see are caring professionals genuinely trying to prepare these young ones for success in school and life.

There are so many more people I could name, like Adria's art teacher, computer teacher, librarian, gym teachers, cafeteria workers and more. THANK YOU ALL!

We parents appreciate how you care for our children every day.