Updates

Posted on November 4, 2015 by Abbie

Our life looks a bit schizophrenic, I supposed. One minute we are in full “normal” school, church, activity mode. The next we have NF things. Then we turn around to work on adoption things. It’s pretty busy around here and we are getting good at switching gears on a dime.

Alas, I realize I have yet to update the blog on on all the NF/Adoption goings on. So, here it goes:

Adoption Update:

In less than a week, Mark and I will drop kids and head to the airport to fly over the “big pond” and arrive in a new and very exciting adventure. Our first trip to Y the Brave’s birth country is coming up. We won’t be bringing him home (as much as we would love to) just yet. This appointment is for our official referral. All total, we’ll spend about a week in country.

The Lord has provided for our funds for this trip with a grant and several donations and all of our hardwork (and friends and family too) with fundraisers. We’ll have two more trips coming up and total need around $8000 to finish out the adoption overseas. That will help pay for our travel, stay and other expenses in country (Y the Brave’s new paperwork, etc). Right now, we were blessed with a covenant loan (no-interest loan) through LifeSong for Orphans for some of that remaining $8000. We would love to not have to use any of that loan and are praying the Lord provides just as He has throughout this whole process.

My heart ya’ll, I can not wait and don’t think I will ever forget the look on Y’s face when we walk in to his school. I don’t know how in the world I will keep from grabbing him up and smooching him (aside from the fact that it would totally embarrass him in front of everyone…I guess I will restrain myself).

Halo/NF

Our ER trip. Emmie fell and dislodged two of the pins in the front. Thankfully, Dr. C was able to hand tighten them in the ER (with some heavy duty pain meds to calm Emmie).

Emmie has had quite an adventure. In the past three months, we have been to the ER once, pediatrician a couple of times, fallen numerous times, seen the orthotist a few times and now had a complete halo/pin site re-positioning.

ER trip under our belts and refueling for home.

This was after a super painful pin tightening visit and a dose of tylenol. Her strength amazes me.

She went in Tuesday and had the re-poisitioning done. Her falls have caused her halo to get wonky and the pins to push in too far (not in to her skull but still too far). Her x-ray on Friday, the 30th, showed some other issues too. The pins were irritating the skin a bit and he wanted to put them in new sites to let her skin heal. Dr. C knows we are in the process of adopting and wanted to get the procedure done before we left town. We were glad he did. She has been getting increasingly upset and agitated with pin cleanings and just in general. When she reaches up to her head or the back of her neck and starts crying, we know she is having problems with it.

Dr. C, neurosurgeon extraordinaire decided that she needed to be put to sleep to get everything centered and set again. Dr. C, unfortunately, was not going to be in town this week, so Dr. R., yet another amazing neurosurgeon and the one who originally placed the halo, did the procedure along with Super R the Orthotist.

Power nap before the morning activities at the hospital.

She did wonderful. Even though she had to wait an extra two hours because of an emergency, Emmie experienced no problems. We were able to go home in the evening and every one has been glad to be here. So far, over-the-counter pain meds are working too! She’s a tough one and we are so proud of her and how well she is doing.

This was a daddy trip. She was only happy in Daddy’s arms. Just got the versed. That is a magical medicine. Unfortunately, the two hour wait meant that it had worn off somewhat by the time she went back and she was quite distraught at having to leave us. That was the hardest OR release we have had yet. All done. Yes, she does look taller. Her neck was re-positioned and gained her a bit more inches.

And the day after. I got her all decorated up and she waited patiently while I did it too!

So, now we have our first OR outpatient done and third surgery. She really is an amazing little girl. I would be curled up in bed for a week after this one surgery but no, she is ready to go and explore. And let’s not discuss the pin tightening that requires excess amounts of chocolate on my part…and after a good cry, she is ready to go!

Since we are three months in to halo land, we have about two more months now until surgery. I’m guessing our next visit with Dr. C in December, we’ll start really discussing what is going to happen and the whens.

Brace Yourselves

Posted on October 12, 2015 by Abbie

One of my biggest shockers since Emmie’s diagnosis has been that I have been brave enough to drive through Atlanta without another adult, not once, but three times in the past three months. While I don’t mind traffic, Atlanta traffic is its own little world that I didn’t care to delve in to. Until Emmie required us too.

In the middle of June, we got the call that Emmie’s new brace (the one just before the halo) was ready and Mark quickly rearranged his schedule and took off so that I could take Emmie for the short appointment. We both knew it would be a boring appointment for the kids but hanging out with daddy for a whole day would be totally awesome. It was.

Since this was my first, “Emmie and me” trip, I made sure we had a celebratory pit stop. At Ikea. Oh yes we did. There are some perks to having to drive to Atlanta for all of her awesomeness.

The appointment took a bit over an hour and she did a wonderful job. Despite the fact she was terrified every time she heard a door open or close.

I must say, she works this brace like the princess super hero that she is.

Complete with double pony tails. Oh yeah.

I found an etsy site called Higgy Bears after Emmie got her brace. This wonderful lady creates stuffed animal braces for children to have stuffed animals sporting their same sense of fashion. I knew she had the scoliosis braces but wasn’t sure if she could make something similar to Emmie’s brace. I decided it was worth a shot and sent an email. And she did it! I was totally impressed. I haven’t had time to email to see if she could do a halo brace now. But for now. Her LeighLeigh doggy is a favorite.

She even went back for her halo placement procedure. LeighLeigh, by the way, is after Emmie’s amazing orthotist who came up with this brace that was indestructible (stoppable only by the evil Kyphosis villain).

What now?

Posted on September 9, 2015 by Abbie

I’m sure everyone is wondering what the plan is now. Our immediate plan includes five months in the halo or until Emmie is between 20 and 21 months. She’ll then have surgery to place what Dr. C calls a “straw’ between either two or four vertebrae in the front of her spine. They may or may not fuse the spine in the back for added stability. They will go in to the front to do the work because that is where the bend is.

This is all up in the air but all the neurosurgeons agree that they do not want her in a halo past five months before she has surgery. Once surgery is done, she’ll stay in a halo for about three months before they remove it. Then three months after that, if she is stable, we are done with this part of NF.

Yep. I said this part. Remember, I said this was a marathon. Unfortunately, NF is a progressive disorder. But it is also unpredictable. It is our understanding that we’ll be addressing the issue of plexiform growth after we get the spine situated and stable. Of course, since all cases are unique and different, those plans may change too.

All we can do for now is enjoy our “new normal” and hang on and pray. We may not know what in the world is coming at us next, but we do take great comfort that God knows it all and knew it all before we ever started this journey.

With a Little Help

Posted on September 7, 2015 by Abbie

People want to know how in the world we are able to get up and go every day. Well, honestly, only through Christ. Our faith keeps us going. Knowing God has given us not one but eight little blessings (and a half…but we can’t do much with him back on his home soil…for now) that need our daily care…we sometimes survive on strength supplied by God alone. Please know that we do have our moments of complete and utter surrender through tears. Every one needs to cry sometimes.

That being said, God has also blessed us with amazing friends and family. Truthfully, we claim most of our friends as family. We had friends/family (isn’t that called framily?), come over while we were in the hospital. Stripped the beds…which is never an easy task when the boys pile them high with their toys and possessions (aka junk)…and wash sheets. They cleaned and scrubbed from top to bottom and Mark was able to come home to a nice clean home.

Other friends drove four hours to sit in a hospital room and grab food for you and watch Emmie on bathroom breaks. They brought beautiful pictures to hang on her ceiling and sweet words of love and laughter. Still other friends came over to pray over us and speak words of love, healing, and peace. My aunt spent the day listening with me to doctors, preparing my food and even soothing Emmie so I could use the restroom and walk around.

My sister and her husband took a day off of work to drive over and entertain Emmie. They were blessed with being the first ones seeing her sporting her new headwear. And, unfortunately, the first, ahem, stinky diaper (that diaper was the stinkiest to end all stinkies by the way). This was well before that diaper went off…obviously. Aunt Yaya wasn’t green in these pictures.

My sister, aka Aunt Yaya, also spent a Saturday entertaining my kids at Ge & Granddady’s house. My niece and nephew had games planned and wrestled and laughed with them throughout the day and night.

My parents drove over to the hospital a couple of days so I could take bathroom breaks and eat.

Both sets of parents were willing to let us invade with children for several days. Feeding us both mentally, and physically.

Friends who rearrange their schedule and let half the kids invade their brand new home while Mark brought us home from the hospital.

We have received a couple of monetary blessings which have allowed us to get a stroller that holds all of Emmie’s stuff, fits her comfortably and can even accommodate a protective three year old brother. We were also able to get Emmie a wider car seat to keep her head from being too far from the back of the seat.

And now, we have not had to prepare a single supper since we have been home. Blessed with meals that give us a chance to regroup and figure out this new normal.

I haven’t even begun on the excellent care we have received at CHOA. Let me just say that PICU nurses are ah-maz-ing. We had nary a one that I wouldn’t call absolutely precious (okay, there were the two that came in and did vitals every two hours during the night and then wanted to change her diaper while she was sleeping, but they even meant well). One of our nurses even set a young doctor straight on the proper protocol to entering a room with a sleeping baby! As a ever so slight and definitely not enough thank you, I brought them donuts. They were pleased, I think.

And Marks’ co-workers. How can we ever thank them enough for how much they have cared for us and him? It’s been overwhelming to see their outpouring of love and support.

Somehow, after all of that, how in the world do I say thank you and it be enough. I don’t think I could ever do so. But, we’ll try. Thank you to our “framily” for standing beside us (and some of you for standing behind us to hold us up). Thank you to our nurses and doctors who work so hard to make sure Emmie gets the best care and was the most comfortable.

Halo Procedure: the Summary

Posted on August 30, 2015 by Abbie

I’m still trying to process this month. The whole entire month. I have spent more days away from home this month than I have at home.

I know I have been absent but there has been a lot going on and several things that I probably won’t share for quite awhile.

Waiting on the versed. That medicine is awesome in soothing her and giving us a few laughs before we had to say “see you soon.”

I am learning the fine art of glove balloons. They worked this trip!

Ah, versed! Emmie was relaxed and had to show her grandparents and daddy her belly button.

Emmie went in on August 13th for her halo procedure. Surgery went smoothly with no complications. After she went to recovery, they sent her to PICU. She had to go there because of the sedation meds they kept her on while she was in traction. We were told to go to PICU waiting room and that we could see her once she was ready. Mark said we waited ten minutes but it felt like an eternity because we could hear her crying (okay, screaming) while they were getting her settled in. The charge nurse came out to reassure us and let us know we could cuddle with her in bed. That soothed my worries about not being able to hold her for three to four days (which actually turned in to more than that).

Once we got to see her, I climbed in to bed with her and grabbed her hands. She calmed down immediately. And that’s where Mark or I stayed for the next six days.

Traction days were long and hard. I had her during the day and Mark stayed with her at night. That way, we were able to also divide up time with the other kids. The time in the hospital was mainly spent soothing her, finding things to entertain her, and scooting her down the bed.

She was on sedation and pain meds. The sedation meds were mainly to keep her calm not put her to sleep. The pain meds helped tremendously when she would get another weight (five pounds in the end) added to her traction.

Whenever she was awake, we would get about ten minutes before we would have to call a nurse to hold the weights as we scooted her down the bed. The weight from the traction and her wiggly self always seemed to find a way to the top of the bed.

Before ipad contraption…she made do with our Kindle Fire.

By the second day, the nurses and I had decided that the white ceiling was not entertaining enough for a child who was stuck on her back. We quickly dug through my hospital bag and grabbed the gel clings I had. While the nurses spotted me, I stuck them up on the light over her bed. That helped a bit. By day four, my arms were sore from holding up the Kindle Fire we had brought. Child Life Specialists came to the rescue with an iPad on a stand that flipped down for her viewing. That thing saved all of us and for once, I cared not about how much screen time my kid was getting. We passed the rest of the time with puppet shows, stuffed animal kisses, and bubbles. If you’re really curious, Emmie’s go to videos on the iPad were videos about dogs with music included. I think we watched ten hours of 20 Dog Breeds.

She couldn’t eat while in traction because of the meds and her position but she got lipids and tpn that helped fill in empty calories.

Her PICC line was not successful in going in which meant daily blood draws were done quite painfully and often with two sticks before a good draw was done.

Our most memorable events included the iv. Her PICC iv was actually used as a peripheral iv. That just means that it was only used for meds. It was basically a deep line iv. I think on Saturday (days ran together), the iv connections snapped. This was outside her body and caused her no health issues, but it did wake me up and cause a major mess. Meds leaked all over her and the hospital bed. It’s not particularly easy to change the sheets of a baby who has three pounds of weight attached to her head. Our nurses worked for about thirty minutes to figure out exactly what needed to be done. It took four nurses and me to get the sheets changed. We also had a bit of help from the valium. The nurses wanted her to be as comfortable as possible so she got a tad bit of valium to calm her while she was suspended above the bed. One nurse held the weights. One held Emmie’s head while another held her body. That left two of us to quickly take the sheets off the bed and put new ones on. Teamwork. Important.

Totally chilling. She loved crossing her legs and just relaxing.

Snuggled time with a doggy that made it’s way in to our room.

She made sure I didn’t go anywhere after Mark went back with the kids.

The other most heartbreaking and painful thing included her iv in her foot. She had two ivs the PIV and then a standard one. This helped her get all of her meds and calories from the tpn and lipids. She started out with the regular iv in her arm but that one came out on Saturday. So, they had to place one in her foot. That iv was for her pain and sedation meds. It worked great. Until Monday. As our nurse was finishing up her vitals and heading out, she happened to look at her iv site. She had already checked it when she came in. But, thankfully, she looked at it before leaving. Emmie’s ankle was red, angry looking, swollen. The iv had come out of her vein. And gone in to her muscle. That meant the sedation meds which were on a continuous drip, had gotten in to her muscles. This could, potentially, cause a pretty serious infection. Thankfully, after a lot of calls to the pharmacist and doctor, it was determined her sedation meds could also be given intramuscular. We stopped worrying about a muscular infection, but, unfortunately, her ankle was deeply bruised and sore. A week later, and she is finally not flinching and screaming when we barely touch it. I think seeing her poor foot swollen and so hot to the touch was harder than the vest. By the time this had happened, we knew the halo wasn’t hurting. We were so grateful, though, for a very attentive nurse.

Emmie did great getting her halo on that Thursday afternoon. She laughed, smiled, and pinched noses through the whole thing. There were lots of loud noises and things going on that she couldn’t see. We were so proud of how brave she was being. She was helped a long quite a bit by a little bit of ativan. It definitely calmed her nerves. After the vest got on, we were working our way out of the PICU and down to a regular room and then out the doors to home.

Super Sidekick R rocked it getting the brace on. I think we caught Emmie in a blink.

Almost ready for Mama’s arms.

A day later and just relaxing with the Graham. Cracker that is.

Nothing made our girl light up like watching her brothers and sisters on skype. She truly loves her sidekicks and the feeling was definitely mutual.

I’ll share a bit more on her hospitalization over the next few days…what the plan is now, and a few pictures and thoughts on the whole thing.

All of a Sudden

Posted on August 9, 2015 by Abbie

Last week, we were cruising along. Getting ready for the final countdown before Y the Brave had to fly over the ocean. I was back to exercising. We were vigorously working on getting our final three dossier documents finished.

All of a sudden…everything changed.

Y and I went for a bike ride on Friday, July 31st. It was one of those awesome rides where you get in lots of miles and forget the humidity. When we got back home, the kids were playing Wii and Mark had stood up to talk to me. Emmie was toddling around, without her brace since it was close to bedtime. She was right in front of Mark. Holding on to the couch. I’ll never forget that. Because, all of a sudden, she fell. A normal toddler fall. She tripped on her feet or a toy left out but she fell.

She cried. Like all normal toddlers. But she also had her body twisted funny when Mark picked her up. He took her upstairs to get her pjs on and try to soothe her. But, she wasn’t soothing. She also wasn’t standing up. We tried to chalk it up to her exhaustion from not napping during the day (all week) and being so busy. So, Mark rocked her, but as extra precaution she slept in our room. Mark was up and down with her all night. Praying no doubt.

The next morning, our fears were starting to become valid. She could stand. She could walk with some assistance but she didn’t want to and cried every time we put her down. She also had several times where she didn’t even want to stand. Shaky on her feet or just collapsing completely. By the evening, we noticed her grip was not very tight. She was still very fussy and standing took a lot of effort. When she was able to stand, especially if she wasn’t holding something, she turned in her right leg trying to balance.

Our worry grew. We had been contacted earlier in the week about getting an x-ray with her neurosurgeon as a three month follow up but there was some confusion, so they were checking on it and we hadn’t scheduled it. Mark decided by that evening that he would call on Monday and get it scheduled asap.

The next morning, we had more tears. She stopped using her arms. Keeping them at a right angle with her wrists relaxed. If we forced her to hold something, she would but she wasn’t reaching for toys and didn’t show a big interest in doing much of anything. She was starting to walk a bit more independently but still very, very slow and shaky compared to how she was earlier in the week. And very reluctant to let go. And still abnormally fussy.

She was so tired in the ER and just wanted to sleep.

We made the decision that evening to call her pediatrician who told us we needed to call the on-call neurologist at CHOA. As an aside, our pediatrician is amazing, after thirteen years, I can gauge from her when I’m over reacting and when I need to buckle down and take things seriously. The neurologist wanted an MRI as soon as possible and the best way to get it was to head to the ER to be admitted and get one in the morning.

CHOA ER was awesome. Aside from getting us through the ER quickly, the pediatrician on call had been in touch with the on call neurologist, on call neurosurgeon and Dr. W, Emmie’s neurologist. They were on the ball and got us in a room as quickly as possible (yes, it was 2 am but we got there as soon as we could).

The MRI on Monday and the CT scan on Tuesday quickly found the problem. While her plexifrom neurofibroma is stable, the kyphosis (bend in her spine) is not. Between May and now, it has bent more and the spinal cord is noticeably more compressed. What was even more concerning was the inflammation on the spinal cord. All from a simple toddler fall that wouldn’t effect a “normal” toddler. Our team of doctors quickly gathered that Emmie’s regression was due to the inflammation.

Sporting her “koalas in space” pjs for the MRI

Late Monday, ready to play after some rest and food.

Granddaddy and Ge came over on Monday to soothe Mama’s nerves and help entertain Emmie. No doubt, Granddaddy gave the best fast rides in the wagon.

This was a neurosurgeon game now. Dr. C, Emmie’s neurosurgeon and a new neurosurgeon, Dr. R. quickly stepped in and worked together to come up with a plan.

Basically, it’s clear that the current brace system is not working. Our goal, more than anything, is to try and avoid spinal surgery until Emmie is close to two. At two the bones are way stronger. We’re ten months from two. Unfortunately, what they are seeing and Emmie’s issues from a small fall are concerning enough to have to take some more action.

Enter the halo brace. On Thursday, Emmie will have a halo brace put on and then be taken to PICU. They will put her in traction, meaning, attach a weight system to the halo and attempt to stretch the spine straight. She’ll be sedated the entire time. This process will take three to four days.

After traction, Dr. C will make a decision as to whether or not we have to do spinal surgery or if she can stay in the halo for ten months and then proceed with surgery.

Emmie has done amazing since last Sunday. She is now back to walking much like she has been. Even pulling up on things. We are keeping her in a brace all of the time minus a quick bath. And we are watching her like a hawk knowing that even a small fall could send us rushing back to the ER.

By Tuesday, she was working on walking. Babbit had to go for a ride too.

Emmie made a new friend, Mr. Fox. He’s a puppet that we met in the gift shop and he can make Emmie giggle or belly laugh in a split second.

Tuesday afternoon, we got to see more of our “old Emmie.” Exploring and playing and she discovered sliding down the slide was fun!

Daddy was able to come down Tuesday and instant laughs were had by all!

We know there are some amazing people out there who love our Super Em and are more than willing to pray. We have some very specific prayer needs right now.

1. Ideally, delaying surgery would be the best course for Emmie. So, please pray that her spine responds to the traction and she is able to just go home with a halo and surgery comes at two.

2. Please pray for all of us as we adjust to this new brace. It takes me about a week to get use to the brace but talking with another mom who has a child in a halo, I’m guessing this will take longer. She’ll no longer be able to go to the pool. Adjustments to car seats, sitting, standing, walking, bathing…it’s going to be a lot on all of us.

3. Y the Brave returns home in a little over to weeks. Mark and I have worked out a plan, while Emmie is in traction, to spend time with Y and the rest of the kids each day. That will make it easier, but obviously, we did not plan for our last two weeks to include surgery and all of these adjustments.

4. Peace. I need peace. I can’t believe that a little over a week ago we were just having fun being a “normal” family. And now this. I can’t believe that a year ago, at this time, we got the news that has changed our family’s “normal.” I’m relying a lot on God and He’s hearing from me constantly. I can say that I do have enough peace at night to sleep but it’s hard. So very hard to watch our daughter have to go through this.

The kids are working through a summer program at church where they memorize verses each week. Y the Brave has been working on Psalm 34:4, memorizing it in English while reading it in his language.

I sought the Lord and He answered me, and delivered me from all my fears. Psalm 34:4

Release

Posted on July 22, 2015 by Abbie

We love to take advantage of Emmie appointments. After all the stresses of doctors and tests, we get to drive through Atlanta traffic and hit a home haven with our family. The kids gather around and have to tell us everything they have done with their aunt, cousins or one of the sets of their grandparents.

We really treasure this time and can feel the weight of all that Emmie is fighting just lift off of our shoulders.

And the kids get to be loved on and the grandparents get to laugh. Sometimes a lot!

That smile of complete and utter childhood joy…ah!

Our family’s homes serve as a sweet release to what could otherwise be a very stressful time. We definitely know what a blessing they all are to us.

Warrior Bead and Thank Yous

Posted on July 14, 2015 by Abbie

I made several dresses that will easily fit over Emmie’s brace. I think this one is one of my favorites. it’s a fabric that I had sitting around for awhile and the dress just turned out so adordable on her. It’s hard to tell she has that giant thing going down her back.

She’s holding her “warrior beads.” We love the idea behind Beads of Courage but after much research found that they were not accepting people who were not in one of their hospital programs. They only take Emory kids who are in the cancer program. Emmie didn’t qualify for those programs. So, I decided that I needed a tangible way to see how much Emmie had gone though, fought for, and overcome. She gets one bead for every month she has a brace. She gets a bead for every neurology, neuosurgeon, ophthalmology appointment. One for each x-ray, MRI, or orthotics appointment as well. She also gets a bead for each month of physical therapy or other therapy…we don’t think she’ll have many of those. These beads in the picture were before all of her appointments in May. She’s earned a bit more since then.

When we found out Emmie was going to have surgery it started. My close friends launched a blessing attack. Each one sent us or gave us survival “things” for the hospital. Okay, mainly chocolate. Lots of yummy chocolate. And a few other things. Then Mark’s co-workers showered us with gift cards to sustain our family on take out, fast food and yummies before, during, and after surgery. We received a few more blessings in gift cards. Friends re-arranged schedules and packed up their families for a day or two to help. The day after we came home from the hospital the gift basket above arrived at our door. Our neighbors had paid to have our yard cut twice. They blessed us with a sweet basket of family time goodies to share and enjoy. Our college crew blessed us with house cleanings that are continuing to be a blessing. We don’t know if we can ever adequately thank everyone enough. And I know I’ve forgotten a few other things.

We love to do these things for others. We try to often and we try to secretly. It’s been hard to be humble and allow others to bless us. Very hard. But it’s also been so comforting to know that I didn’t have to worry about the little things. Others had already thought of and provided for it. It has overwhelmed us to see God’s love for us in the way others serve Him!

Running…

Posted on June 24, 2015 by Abbie

This is a marathon. This neurofibromatosis journey. I wish it was a quick fix and easy answer but unfortunately it’s not. We are slowly coming to terms with the fact that there will be surgeries, MRIs, specialists in our future. I’m pretty sure we’ll learn all of the roads in downtown Atlanta in a very short time. We’ll know all the “good” nurses who can get the iv in on a first stick. All of that.

It’s so easy in today’s society to expect a quick fix. Easy answer. When people find out she had surgery to remove “some” of her tumor they automatically assume that everything is good now. She’s cured. She’s healed. Truth is, she’s not. Genetic disorders just can’t go away with a surgery. We know looking at the history of her plexiform and looking at the history of plexiforms in a broad scope, that it will grow. Our prayer is that she grows faster than it but that is something we won’t know.

Sometimes I hate running this journey. I get angry and frustrated and just want to hit something (wishing we could join a gym for that very purpose). Some days it’s a constant battle and constant reminder that I am not in control. I have to remind myself countless times that God is in control. I know that He knows what Emmie needs. We know that nothing for our Super Em will happen without Him knowing about it first. Yes, this is a marathon, but we are so grateful we are not running it alone. Our God is in the lead and we have some pretty amazing people who are helping us take that next step. And the next. And the next. When we grow weary there are others who are picking us up and running with us.

And sometimes, I don’t even realize we are running this race. She is laughing and smiling and trying her best to talk. She loves her cat and dogs with passion and is starting to explore away from me every day. Then, we get her MRI report and the words are there. Staring at me. Taunting me and making sure to remind me that Emmie on the outside is a rockstar but inside, we are waiting and watching very closely. Severe kyphosis and large plexiform neurofibroma. A year ago we would have told you those were made up Dr. Seuss type words. Today, we know better. Yes, we focus on what a super girl Emmie is, but those words are always in the back of our minds and we know we are just waiting and watching to see.

We actually forget about the brace. Like the time we were in the hardware store and the cashier asked Mark if there was an accident. Mark, who was working on paying, was a bit embarrassed because Malachi had an “accident” and he thought the guy could smell it. He just shrugged it off and said something about it happening sometimes. He didn’t even think about Emmie in her brace. Thankfully, we were able to recover and explain her brace! It’s amazing how, now, that is just a part of Emmie. It’s what makes her the super hero she is.

As an update, we are on hold for the clinical trial since the plexiform was stable after three months. So, we’re praying we don’t see Dr. W (as outstanding as he is) until December. And that the plexiform does not cause any issues.

Emmie’s added another running partner. I admitted a need for help in getting her closer to independent walking and requested a referral. She can cruise with the best of them. She can also let go and walk a good distance. But she’s missing just a few things. She can’t stand up without using mama or daddy. She can’t stand from sitting. She can’t roll over in her brace (there are screws sticking out and it’s quite painful or her). And I’m tired, ya’ll. I needed someone to come along side of us and give us clear guidance on how to get Emmie to be as independent as can be. So, she had a physical therapy evaluation with an awesome therapist and wonderful long-time family friend. He did see areas where he could help her. Help me. He doesn’t think it will take her long to get going and neither do I. We just need a little guidance and she needs a ~~good kick in the pants~~ boost in the right direction.

A Whole Lotta

Posted on June 7, 2015 by Abbie

Coming at you is an update on our Super Emmie. But first, you may want to get comfy. Grab a coffee or tea. Settle in. This is a long one.

Go ahead. I’ll wait. Comfy? Let’s get started…

Over the course of two days Emmie had an ophthalmology, neurology and orthotics appointments. She also had an MRI and travelled three hours to her grandparents. Then we travelled an hour both ways to her Atlanta appointments. To say she was a trooper is putting it mildly. By the last appointment on day two she was done though. Thankfully, her neurologist understood completely.

The more vocal and animated she gets, the more we get to laugh at her loopiness after MRIs. At least she wakes up happy.

1. Feet: We noticed this past weekend when Emmie was cruising that her right toes are turning in. After consulting with Dr. B, her pediatrician, we think it is metatarsus tarvus (adductus). We’re doing stretching exercises right now and will re-evaluate in three to five weeks.

2. Weight: Emmie lost weight from April to May. We’re not sure why. She also lost weight from May to this week. We know that could have been from the stomach bug she had the week before. We are going to be keeping a food journal this next week or so. We are also going to try some things to increase her calorie intake.

3. Horner Syndrome: Emmie‘s wonderful ophthalmologist confirmed that she is suffering from nerve damage due to the surgery. The nerve damage is called Horner syndrome and is a fancy way of saying droopy eyelid, slightly smaller pupil, and not sweating on the right side of the head. It could very well get better but this is a watch and wait scenario. So far, she is not having any problems with vision. She’ll see the ophthalmologist in six months.

4. Bracing: We are now on brace #5. The orthotist (we found out her title), Super Sidekick L, has been great to work with and has sought to think outside of the box to make Emmie‘s brace durable. She brought out another brace last week and told us it was actually the minerva device she was supposed to have. We tried it on but it is too big. The true minerva brace is a very hard plastic and all metal neck/chin frame. Leigh recognized that her current brace is not going to work long term. She said if it was a temporary one or two month thing we could get away with it. But since this is going to be long term, she wants to make something more durable. What she wants to do is take a brace that is similar to what children wear for scoliosis and attach the minerva extension to that brace. She has to have a new prescription for that so we talked to her neurologist and are awaiting his answer. Please pray that we get one soon. The new brace will make all of our lives so much easier.

Waiting on Super Sidekick L

5. Neurology: MRI shows that surgery removed 20% of the plexiform neurofibroma (tumor) that is in her neck. We know Dr. C, neurosurgeon said that he got 100% but Dr. W interpreted that to mean he got 100% of what he was going for. The MRI showed marked improvement in her windpipe area after surgery which was great to see. Dr. W also told us that they are very much aware that the bracing is temporary and that the only fix for her kyphosis will be surgery. He said that he felt like her kyphosis is caused by two things: the plexiform moving and pushing things and the tendency for NF kids to have more movable spines (more susceptible to kyphosis and scoliosis). They are really, really hoping the bracing prevents any need for surgery for at least two years. Obviously, if it lasts longer, then that is wonderful! We’ll keep going as long as we need to to get her as old as she can be for surgery. Dr. W is also looking into clinical trials. They (NF researchers/professionals) are discussing (this weekend in fact) opening up the trials to younger children. Dr. W does have one trial drug in mind with hopes that it will attack the plexiform and give more growing room for the spine. There are a lot of things to consider and discuss both for us and Dr. W. We should hear from him in a couple of weeks to know what he is thinking and we’ll go from there. Next MRI will be in six months.

These past two days have confirmed that God has placed us in a great place for Emmie to receive the best care from some of the nation’s top NF doctors. We are still in awe that Emmie is treated by one of the best NF neurologists in the country and he does everything he can to make her laugh and smile even after a very long day. Emmie‘s got a lot going on but we know the Lord is so much bigger than all of her stuff.

The end of day two and finally able to rest.

Just a Bunch of Characters

Musings of everyday life in a house full of Characters.

Tag Archives: Neurofibromatosis