Neuro Adventures

Posted on February 12, 2019 by Abbie

Emmie had a check up at the start of the year with her neurologist and orthotist. We had noticed that her neurologist, Dr. Wolf always wears crazy socks. So, I searched online and found some super superhero socks at John’s Crazy Socks. Emmie was so excited to give them to him and he made a big deal about it.

He was so excited to see how awesome Emmie is doing. We go back in six months. She didn’t want to pose with him so he went to her and gave the goofy pose. By the way, her amazing shirt, I purchased from Littlest Warrior. I absolutely love these shirts! I have plans for her to rock the “Rare Jewel” shirt soon.

We have some amazing friends in Atlanta right now and they offered for our kids to come over and play the next time we went to Atlanta. We haven’t seen them in a few years and the kids were iffy on going. But once we got there, they settled right in. Needless to say, they had an absolute blast!

Meanwhile, Emmie and I had a girls’ day complete with ice cream.

After I picked up the kiddos, we headed out of Atlanta (which is an adventure in and of itself) and made a pitstop for pizza where I learned that Tobin likes olives. He is so my son.

MRI #12

Posted on December 30, 2018 by Abbie

This MRI was really uneventful it was basically just to check and make sure she was peachy keen to head back home. We praise God that she got a good report and afterwards, we headed towards the airport and we were back home by Thanksgiving evening!

Emmie in her goofy state after anesthesia.

Next up for Moyamoya, we wait about six more months and return back to California for an MRI and angiogram adn to meet with her doctor. That MRI will tell us whether the surgery was a success.

She sees her neurologist at the beginning of January and will see her ophthalmologist and orthopedic doctor in the near future as well. And on and on it goes with our super hero.

Surgery Day 2018

Posted on December 29, 2018 by Abbie

Emmie had a joyful heart until we got to the back and distraction got hard. She was the bravest four year old I have ever met. They did a great job of getting her through quickly.

Once she went back for surgery, Mark and I had to wait. Her last surgery took over eight hours and we had several people to distract us. This time, it was just us…which, I supposed, meant we got into a lot of mischief.

Reading comments on silly posts had Mark and I both in tears. That picture is Mark crying in laughter. At that point, Emmie was done with surgery and we were waiting to see her in the PICU waiting room. I suppose it was a lot of nervous laughter being released. The other picture is Mark’s impersonation of the kids at a touch screen.

Nothing at all beats holding this sweet girls hand and seeing her snuggle with her daddy.

After we got in good snuggles, I headed back to RMH and met our friends to get Tobin. The next day, Mark and I swapped up. Emmie had such a hard time the day after surgery. But soon after I got there, they started taking IVs out (she had four total) and she started to perk up. I got to see more of my Emmie when we looked at pictures of her friends and our family on Instagram and then “shopped” for clothes on Zulily. And, I got to hold her.

Holding my babies in my arms is the best thing ever.

Mark got some Tobin snuggles in too.

Child Life came in with a bunch of fun things which brought our Emmie girl into some big smiles!

Out of Emmie’s window was a little garden. I peeked out one time and saw a hummingbird. If you look closely, it’s hanging out to the left of the plant.

By the second morning, I was able to braid her matted hair and play princesses. And then she got to leave the hospital! She was so glad to be out!

The resilience and joy in Emmie’s heart is overwhelming. She is so strong and has such a sweet smile despite all she has been through. God has taught me a lot through her but more than anything, when I look at her, I can always see God’s hand of protection and guidance.

MRI #11

Posted on December 26, 2018 by Abbie

The day after we landed in California, we headed to meet Dr. Steinberg and then Emmie went for her eleventh MRI and as an added bonus, an angiogram. The angiogram helped the doctors to see just where her occlusion was and to make sure they knew which arteries they were going for for the bypass. It also helped ot make sure she didn’t have any more areas of concern and to make sure she continued to show no signs of a stroke or TIA. Praise God! She didn’t show any issues. The angiogram showed that just the middle left cerebral artery was occluded and pretty much at 100%. There were still signs of collateral vessels and Dr. Steinberg told us that the collateral vessels were what was keeping her alive. It’s our understanding that the moyamoya vessels are really weak and eventually stop working which is what leads to a lot of people having strokes or TIAs.

This was a hard MRI for mama. They wouldn’t allow anyone but a parent back with her. Emmie chose Mark and I got to stay with Tobin. It broke my heart but she did wonderful with daddy.

Tobin was able to sleep while we waited on Ems to get done. And then mama was able to go get her girl.

Emmie was still sleeping off the anesthesia when I got to her in recovery. Because of the angiogram, she had to keep her leg straight for four hours. So, we had to stay for awhile in the Short Stay Unit. Anyway, I took her hand when I got to her and she wouldn’t let go. She squeezed it every time I moved. Then her nurse said, “I have a popsicle for a little girl once we see some eyeballs.” Emmie smiled the biggest smile and finally opened her eyes.

After I took the picture above, she told me to show it to everyone. I think she was super proud to be able to have not one but three popsicles! (Note: Emmie’s Horner syndrome tends to show up pretty strong after anesthesia and gradually gets better. That’s why it looks like she’s winking 🙂 .)

She loved the Short Stay Unit because she had her own personal tv/movie channel. She gets really goofy coming off of anesthesia and I have a few doozy stories that I just had to write down so I don’t forget.

–I eventually had to keep my hand on her leg because she kept wiggling it. At one point, she looked at me in all seriousness, “Mama, there’s something on my leg!”

“Yes,” I told her. “It’s my hand. You won’t keep your leg straight so I have it there to remind you.”

“Oh.”

–At another point, she wanted to argue with me that she had her undies on. They placed the angiogram at her groin and I knew for a fact she didn’t have any on because they handed them to me. But she was insistent that they were on because they were when she left and her daddy had told her they were.

–Last one: Emmie had had nothing to eat since the night before and I can only imagine was starving. The way their meal system works, is that a patient can choose anything they want and they can get as much as they want as long as it fits on a tray. The patient can also order every thirty minutes. Well, once we found that out, Emmie looked at the menu and announced, “I want EVERYTHING!” She was starving and ate so well once she could get some food.

Super Ems Flies

Posted on December 23, 2018 by Abbie

While Mama and Daddy prayed and fretted for our super hero and her super siblings, Emmie was plotting and planning for her first plane ride. I’m grateful she had this “fun” distraction for the tough week and half that laid ahead.

As soon as we were seated she began, “Are we flying? Are we flying? Hey daddy! Are we flying yet?” She must have asked us at least twenty times.

Tobin did good. He slept for a couple of the hours going and the whole way back. We were hoping to get him a seat but we got our tickets so late that another ticket would have been terribly expensive. So, he rode in our laps and it worked out fine.

Emmie managed naps at take off and landings.

She also made sure she knew what to do in case of an emergency.

We were so grateful to be able to have our tickets provided by Miracle Flights. This organization was great to work with and Southwest was a great airline to fly with.

Lessons from a Superhero

Posted on November 10, 2018 by Abbie

Tomorrow Super Ems flies! Monday, Emmie will meet Dr. Steinberg and then have an MRI and angiogram. She’ll lay flat for 4 to 6 hours and will probably stay overnight in the hospital. Thursday, November 15th is go time.

In honor of our amazing superhero, I thought i would share a small piece of my heart observations that I wrote back in May.

The alarm starts blaring letting me know that it’s 7 am. The latest I should possibly sleep before we’re super behind on our seemingly never-ending busy days. My brain tells me to move but my body is begging me to stay still and rest longer. I roll over and see Emmie asleep on Mark’s pillow. As usual, she came sneaking in during the night needing our snuggles and she gently fell back asleep. I watch her quiet slow breathing and am reminded, once again of how precious this gift is. This happens almost every day. I am in awe that I get to cuddle with this almost four year old or hold her hand as she drifts off to sleep in the wee hours of the morning.

This morning, I decide to roll over and let my body win. I close my eyes but our superhero stirs beside me. Nope. No more sleeping today. She rolls over and with sleepy eyes and a groggy-waking-up voice calls, “Mama.” She waits patiently for me to roll over and look at her.

“Yes, baby.”

“I love you.” She reaches for my hand and smiles contentedly.

This little girl who has been through so very very much in such a small amount of time and she still smiles constantly in wonder and awe at the world around her.

She amazes me that at four years old, she can strut into a doctor’s office and pretty much have everyone wrapped around her finger as she smiles and offers up high fives and hugs. She has an insight into how to interact with everyone…humans and animals…that far exceeds her age. Maybe it’s her experience but maybe, it’s also how our God has equipped her to deal with all that is ahead in the life she has.

The sweet, unexpected “I love yous” are just the tip of the iceberg of what I have learned these past four years of living with a super hero.

Number One: All mornings should start out with love.

At parent observation class for ballet this year, she sidled up to each person in class…her friends. One friend was just not having it that day and crossed her arms and poked out her lip and looked at her mama for rescue. Eventually, Emmie moved on. A day or so later she said, “Mama, I sat by E in class and she didn’t like that.” I agreed and we discussed how maybe she should ask if she can sit by a friend before she does so. She agreed.

The next week, she remembered our conversation and told me she would ask E if she could sit by her this week. But then she went a step further. She drew a picture for her and made sure to present it to her after ballet. E’s face lit up bright as the sky and Emmie was thrilled she had made her friend happy.

She’s intuitive to the needs of others (most of the time…she still is very much a self-centered typical four year old) and wants to show love to those she cares about.

Number Two: Always seek out ways to make others smile.

With Emmie’s age, we are entering a new era of tests, pokes, and understanding. She’s become more aware of it all. We’ve always been honest with her about what is going on but that doesn’t mean that she isn’t scared or doesn’t get sad. On her new brace day this year, after two hours of fitting and waiting, she had to cry. And it was okay. Cuddling up with daddy we told her to let it out and cry it out.

Number Three: Sometimes life is hard and it’s okay to cry.

Days with a four year old are filled with questions. There is so much learning at this age. Emmie is no different than other kiddos her age. Her questions range from “What age are you?” to “Will you read me a story?” And if we’re discussing an activity, she lights up like a Christmas tree and says, “I so excited for that!” She truly is. She finds joy in going to the store, church, doctor’s offices. There’s joy in seeing a dog on a walk or a fish at the fish shop. She gets equally excited watching her siblings at awards ceremonies or swim practice.

Number Four: Find joy in the “every” things.

We don’t have a clue what her future is going to be like. But, we can look back on her life and how she has grown. God has taught us so much through our superhero as she grows.

On the Edge

Posted on October 11, 2018 by Abbie

Well, here we are again. Standing on the edge of another surgery. If you asked us a month ago if we saw this coming, we’d probably be in denial. No, we’d say. Not at all. Our little girl is smiling and laughing. She gets into any mischief a strong willed four year old might touch. She fights with her brothers and sisters just like any other sibling. No. We’d tell you, our little girl is just another normal little girl.

But that’s not the case. Emmie’s scans were reviewed by a leading cerebrovascular neurosurgeon (a neurosurgeon who deals with the blood vessels in the brain) from Stanford University, Dr Steinberg

Our “normal” world came crashing down last Tuesday when we heard back from that neurosurgeon. The occlusion of the artery is almost completely closed. And while she hasn’t had a stroke yet, she is definitely at risk for one. His team also saw Moyamoya vessels. She needs surgery.

We’ve spent the past week on the phone with her local neurosurgeon, calling insurance, reading research papers, consulting other people we know familiar with moyamoya and NF. Everyone seemed to agree. Emmie needs an indirect bypass of her brain. They’ll take a temporal artery and place it on her brain. The prayer is the brain is thirsty enough to grow down into her brain and replace the artery that is closed.

Of course, we have spent the past week praying. And God has answered and re-confirmed for us again and again that this was the right thing to do for her.

Not only did we need confirmation that she needed the surgery but also about where to have it done. We are so grateful for her neurosurgeon that fixed her neck. He has been a wonderful doctor and loves our Emmie dearly. However, we have the opportunity to have Dr. Steinberg perform the surgery and feel that his expertise in moyamoya is going to be a great benefit for Emmie.

And that leads to where we are now. We’ve scheduled Emmie’s surgery for November 15th.

In true Emmie fashion, she is planning out all the things she wants to take with her on the plane and is wondering what car she’ll ride in.

Prayers through all of this are appreciated.

Planning childcare for our kids.
Arranging flights-We’re hoping to get a flight through Miracle Flights if we qualify. Update: We qualify and are working on the paperwork now but need our itinerary as soon as possible to finish that.
Arranging our stay in California-that Ronald McDonald House will have openings or assistance.
Traveling with an excited and busy four year old and her equally busy and mischievous one year old brother.
And peace…our hearts are breaking that our little girl has to go through another surgery. That she has something else she will have to deal with the rest of her life. She has such joy and peace and trust. Please pray that we can be strong for her. n

This is the mirror image of her brain vessels. So the right side is her left side.

For I, the Lord your God,
hold your right hand;
it is I who say to you, “Fear not,
I am the one who helps you.”
Isaiah 41:13

Number 10 and Fighting On

Posted on September 6, 2018 by Abbie

I’ve been trying to get this squeaked out for the past week. I wasn’t sure how to start or whether I even wanted to. Putting it in writing on the blog kind of makes it official. There’s still a lot up in the air but one thing is certain…Super Ems is fighting another battle.

Emmie did wonderful with anesthesia and getting through the whole procedure as usual. Our girl rocks through all of it as usual and Tobin made sure to sympathy cry through getting the iv out.

We talked with her neurologist, Dr. W on Friday. And we received the report yesterday.

Let’s just hash out the details and then go from there:

Emmie definitely has stenosis of the left cerebral artery. Stenosis is a narrowing of the blood vessels. The cerebral artery vessel is significantly narrow. Dr. W told us that she is getting blood flow to the left hemisphere but it is very slow because it has to come from the right vessel. There are no signs of tiny vessels forming which would lend to a diagnosis of what is called moyamoya (pretty interesting to read about and is something that can happen in NF). He told us that it could be we are at the very beginning of moyamoya but it’s really just too early to tell.

We asked Dr. W if this was an NF thing and he said it was. It’s not common but it is definitely something that all NF doctors are familiar with and so are other doctors.

Big praises though:

There were no signs tha
t she has had a stroke and no signs that a stroke is coming in the immediate future!
This isn’t like her kyphosis where everyone tried to scramble to figure out how to work it. Stenosis is something that neurosurgeons are familiar with.
There are no signs of a tumor causing the stenosis!

Prayers and next steps:

Dr. W is talking to Emmie’s current neurosurgeon to see if he is comfortable with working with her. If not, there is another neurosurgeon at CHOA is very familiar with stenosis and she could be referred to him. We know of this doctor and have already been talking with another NF mom whose daughter is seen by him (I LOVE social media for this very reason).
Please pray for wisdom for the doctors. There is a procedure they can do but it has to be done at the right time. Too soon and the brain won’t recognize the need for it. Too late and we’ll be dealing with after-effects of a stroke etc.
We’re in the process of getting in touch with another neurosurgeon just to have her scans reviewed. We were told about him, again from a mom who has already walked this path. He is familiar with moyamoya and other vascular issues as well as with NF…basically he is a leading doctor in this kind of stuff.
Dr. W was adamant that Emmie not get dehydrated. She’s at a greater risk of stroke and any change in blood pressure puts her closer to having one. Stomach bugs mean a trip to the ER to get fluids and monitor blood pressure So, if you hear us pushing water on her, it’s because of that! I have to say this is putting my stomach in knots. Kids get stomach bugs all the time. My kids are no exception. Mark and I are pretty laid back with taking our kids to the doctor much less to the ER. We jokingly say we are the “I’ve seen bluer” parents. Please pray for us that we can be diligent and pray that she can skip the stomach bug for forever.

There. That’s the raw facts in layman terms. If you’re really curious what the scans look like, let me know and I’ll send a couple of screenshots I took. It’s very evident that something doesn’t look right.

I go from just plugging along with life to holding my breath. I watch our lively four year old bossing her siblings around, laughing at silly tickles, running and dancing. It’s hard for me to believe that her beautiful little brain is having to work so hard to keep plugging away. I’m in wonder and complete awe that God has chosen to protect her from any harsh effects so far as her body continually battles against itself. We are trusting God right now as always for HIs loving protection of our superhero. We know that He knew Emmie long before we did. He created her and knows each breath she takes. Each hair on her head. And yes, each blood vessel and vein in her body. Those promises lead me to trust Him even more and to know that no matter what, He is still our God. Our Abba, Father.

“For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”

Isaiah 41:13

Number 9 and Brace Yourselves…Again

Posted on August 20, 2018 by Abbie

Emmie had her ninth MRI at the end of May. Tobin got to hang with us this time. It was a long and very hard day. We, of course, don’t know the details but whoever went before Emmie was a pretty difficult case. She was scheduled to go back at 9. She didn’t get back until noon. It would have been so easy for us to get angry but what good would that have done any of us except to stress out the staff even more. So, we made the best of it. Emmie watched three movies and was content to just chill even though she had gone so long without food. We always pack a hospital bag and we found things to do in the bag and the nurses brought things for her. We all got some good old cuddles. When she went in the tube, we got a blanket and Tobin had a good time with her balloon. This kid was SOOOOO out of it after her MRI. It was hilarious. Next time, we’ll have to get a video or at least write down all the silly things she says. She devoured everything we gave her to eat the rest of the day.

So, the report was like this:

All plexiforms are STABLE!!!!!
No signs of optic gliomas (tumors in the nerve behind the eye)
The tumor in her neck is going down near her right lung and it appears to be in front of it and not pressing on it.
There appears to be some narrowing of blood vessels in her left cerebral artery (stenosis). It’s not on any major artery and she is symptom free. Recommendation was made to have an MRA which is like an MRI but looks at the blood vessels. When we met with her neurologist in June, we asked that she has it done sooner rather than later to see what’s going on. I’m purposely not posting more information because we just don’t have any solid answers as to what is going on yet. We have an idea but nothing firm. Emmie will have the MRA August 29th. It’s not a long test but she’ll have to be put under general anesthesia again. Please pray for her and us during this time. We know God has big plans for our hero. We see all He has done through her every time we glance at her. While this information is very scary, we are trusting in Christ through it all.

Now back to all things May…
The day after her MRI, we headed to our favorite people…the orthotists! It was a loooong appointment as she had to be fitted for her brace. But, again, we kept busy. Netflix and wifi—thank you!

She did great. But these pictures only tell half the story. Two days of poking and prodding and our girl was so sad by the end of this second day. After we finished with the fitting, she jumped into her daddy’s arms and had a good ol’ cry. Our orthotist thought something was wrong. No. She’s just tired. She has to wear a brace and has had to wear one most of her life. This. Is. Not. Easy. Our brave girl trusts that what we are doing is for her good. By the end of the first week, she was already up to wearing her brace 16 hours a day.

Super Heroes Unite!

Posted on August 10, 2018 by Abbie

We were so excited when we found out that Atlanta would be the host city for the 2018 NF Forum put on by Children’s Tumor Foundation (CTF). That’s practically in our backyard (well, sort of). Of course, we all had to come. They put a call out for posters to show our NF Heroes journey and Ace and I jumped in brainstorming, sketching, discussing and drawing (all Ace on that last one). Emmie was thrilled to wear her cape and show off for everyone. We took up two tables for the welcome dinner!
CTF loves on our kids…all of our kids!
Saturday, Mark and I sat in on meetings and learned a bit more about the research that CTF has helped fund. We also learned about new treatments and patient initiatives that we are looking forward to getting involved in in the future. Tobin…well, he made friends (several people tried to take off with him and get all his cuddles), ate furniture and in general entertained everyone he saw. After the conference on Saturday, we ate at The Varsity because…well, because we were in Atlanta of course! I couldn’t resist getting some pictures of our kiddos all matching in their CTF shirts…especially with the Olympic Torch in the background.

Mark’s parents came over for the conference. Papa echoed our thoughts about CTF. The organization is top notch. They have worked to become leaders in research into NF. Not only that but their innovative way of going through clinical trials has had broad reaches for other disorders and diseases. We are proud to support Children’s Tumor Foundation and the work they do to help our Super Ems!

Just a Bunch of Characters

Musings of everyday life in a house full of Characters.

Tag Archives: Neurofibromatosis