"SEIZE" the day...wish I had a sweeter post.

As many of my friends know, I am definitely one to cease the day! Love that saying. I try to make the most out of each day and thank God for how blessed we truly are.

Frankie and I flew to Florida to visit and relax at the beach with both my sisters, Cici & Carissa and their families. After our first day on the sand walking bare foot, Frankie was screaming and telling me her foot hurt...not her right one,the stronger one, but her left. Mimi (Aunt Cari) thought it was a muscle cramp in her foot so we had her shove down a banana and drink lots of water. The pain subsided after a while so we opted to keep her orthotics on while on the beach. NOT fun for most kids, but Frankie was OK with it.

Frankie & MIMI

Frankie & Aunt Cici

The rest of the vacation couldn't have been more fun. Frankie had a blast with her cousins, Zach, Alexis and Jaqueline. We went ghost crab hunting and did a lot of walking on the beach. Frankie waves to EVERYONE and says hi as she is strolling down the coast line. We were calling her the mayor of Crystal Beach!

She even stopped one gentleman on his beach chair and said, "Are you drinking apple juice?" He nodded yes with a half smile. Uh, it was a corona in a bottle. We're not supposed to have bottles on the beach but the mayor didn't care. 

When we flew back from Florida this past week on August 11th, Mark picked us up from the airport. Frankie was so excited to be home. We got in around 4pm and headed to a local restaurant. Frankie seemed tired in the car so she took a nap in her car seat. I decided to give her more time to nap before we ate so I asked Mark to drop me off at Target to get a few items as she slept. As I walked out of the store, Mark said, "I think you need to check on her. She's not answering me." As I opened the back door I saw her eyes rolled to the side. "FRANKIE!!!" I yelled. "FRANKIE!!! Can you hear me?" She didn't respond. Her eyes were open and turned to the right. I knew in my mind that it was a seizure but my heart didn't want to believe it.I told Mark to drive to the ER....He knew of a clinic about 20 minutes away. Meanwhile, I videotaped her seizure with my phone and kept trying to get her attention. I remembered to leave her alone if it is a focal seizure so that's what I tried to do...but I kept attempting to get her attention. She was unresponsive.I was panicked but composed.

We got to the ER and they quickly gave Frankie Ativan. She quickly came out of the seizure but fell asleep. They did a cat scan and kept her on oxygen. After the scan, the Dr said..."I think you need to see this." 

Quick background on brain scans: As some of you know, Mark and I had decided against an MRI for Frankie in the past. I knew she had some sort of lesion on the left side of her brain that was causing the right side to be not as strong. Since she was 7 months old, we have been treating the symptoms. She has been in PT and OT since then and has seen many specialists...from Physiatrists to Neurologists. We didn't need the MRI to give us a crystal ball or to prove what we were living with. We didn't want to put her through anesthesia unless there was a dire need.

So,when I saw the cat scan, I wanted to pass out. Frankie had a huge cyst, covering 2/3 of the left side of her brain. The Dr used the word, "miraculous" to describe Franke's ability to walk, talk, etc...He said if he saw an adult with the same MRI,he or she probably wouldn't be able to move their right side or talk.

That same Dr. said she it appeared she had an arachnoid cyst. Well, Ms. McGoogle looked it up and had my sister do the research on it. Meanwhile, we were being transported via ambulance to ICU at Children's Hospital in Dallas.I was able to ride with Frankie and she was slowly coming out of her sedation. The super cool ambulance was made specifically for children. I was able to choose her favorite show out of a library for her to watch on their flat screen tv. I chose good ol' Curious George. I'm sure she enjoyed it. 

After being in the hospital for 3 days, we learned a lot by the MRI and EEG of the brain. The Neurosurgeon concluded that Frankie has static encephalopathy. Huge second word. The word static, when I first heard it, made me feel much better. The cyst will not get bigger AND...she was born with it. The Neuro team concluded that she had a stroke in utero. This is what I suspected all along. I just didn't realize the cyst was so HUGE! Thank God for neuroplasticity. Frankie's right side of the brain and part of the left has been compensating for the damaged area.The brain CAN rewire itself! Early intervention including therapy is to thank for this. And God. 

Here's a visit from Nana during the EEG. 

We are now out of the hospital, but have to deal with possible seizures. Frankie is on a medicine now twice daily.  I have to thank Uncle Matt, our first visitor for putting the first smile on her face! I also thank Nana and Aunt Kristin for coming to visit us. Ashley, thank you for offering to come and my parents for sending her the biggest Olaf I have ever seen! To my entire family and friends, I thank you for your prayers. I felt them! We didn't want to tell many people that we were in the hospital because we knew everything was going to be OK. With that said, I'm extremely confident that her seizures can be managed by these new meds and she will continue to amaze us everyday. We start school in 2 weeks and will be going to private PT, OT and ST weekly. I see Ballet in the near future too!I'm looking forward to getting into a routine, no doubt. 

We are finally home!

As I sat in front of all the kids at Children's Therapy Center in Virginia during our last day there last month, I have to say I was struck by some intense emotions. Frankie has been a willing patron there for 4 years. I say willing because she has never dreaded going to physical and occupational therapy weekly. In fact, she screams with excitement on our way there every Wednesday. NOT kidding. However, her visits there when she was 6 months old didn't start out that way. There were many tears. At that time, our main goal was to get her to sit and keep her head up. Belly-time...was rough-time. Through the weeks, months and years, therapy has been a part of our lives and our therapy angels have made it fun. Spending our time there every week has been "normal" for the both of us.What IS "normal," anyway?

Here's Frankie playing a little game of "wipeout" with her PT, Ms. Amanda during our last 2 weeks there.

We were able to see Kathryn, our occupational therapist on our last day. THEY are smiling, Mama was crying. The photo says it all. Frankie thinks she hung the moon! And heck ya...we had our Texas tee on! Thank you, Tia Rose!

We worked with Hannah on our last day of PT since Amanda was out. Hannah is a sweetheart! She had Frankie step down from a platform with one one leg at a time, and touch a bubble on the floor with the other foot. This helps build strength and balance.As you can see, Frankie still needs assistance with this. I'm pretty sure I would have a hard time with this exercise too! 

After our last day of therapy,I had time time for my wandering mind to reflect on our last few years in Virginia. I want to hit myself (well,not really,) by not insisting that we have private speech therapy weekly. I see other kids Frankie's age having grown-up dialogue with other kids/adults and I still don't get much of this with Frankie.I purposely ask her open ended questions as soon as I pick her up from school each day in the hopes to get her thinker to spin. Sometimes, she doesn't want to talk. I totally remember not wanting to talk after school, so I get it. Who wants to chat after talking and thinking all day?

But, I keep trying to get her to chat. When I picked her up in the carpool line the last week of school, the first thing SHE asked ME when she was strapped into her seat was, "what's on your chin?" I replied, "which one?" HA...She kept pointing at my chin. I had to laugh and said,"That's a zit. A pimple." Then she quickly belted out the song, "Jesus loves me this I know." I quickly forgot about having to nurse the growth on my chin that she was so quick to point out, and was reminded how happy our little girl has been in the Christian school that she attended!

I must add that she was really proud that Daddy came to school for Daddy Appreciation Day. Mark was trying to take it easy on the carbs that week but I told him he better shove those muffins down, or else! hehe

Our last month in Virginia was eventful. We were able to hit the soccer field a few times. Little Miss F had a hard time hanging with the soccer group. She wanted to go out and do her own thing. Another reminder that we need to get her into more recreational activities with peers so she can get use to following directions and being part of a team.

Saying our last goodbyes was tough. I purposely avoided seeing a few friends (you know who you are) for the last hug. Selfish, I know. BUT, I have always had a  hard time with goodbyes. Actually, I don't believe in goodbyes, because I always have hope I will see people again. BUT...I still don't like them.

After a 3 day drive, we are now residents of Texas again! Yehaw! Frankie was SO awesome during our trip...thank goodness for the TV in the car but she wanted to hear her Christian music from school most of the time. We all have it memorized now. =) Here she is posing after being forced to, right after we hit the Texas state line!

The first two weeks we have been here, Frankie has had a pediatric appointment, (which was needed for therapy scripts in Texas,) a dentist appointment, neurology appointment and an evaluation for physical therapy. We will see the orthopedic surgeon, the orthotist (to get her fitted for braces) and an opthamologist in the next few weeks. We also have our occupational therapy and speech evaluations coming up. Bizzy bees!! We are trying to get all medical appointments out of the way before school starts and we are coming along just fine! We also toured the school we wanted to enroll Frankie at and we now feel comfortable it will be a good fit.YES!!!

We are proud to be in the no-cavity club after her 4th dentist follow up!

I have to say the appointment with Dr.Jan, our new neurologist here has been the highlight of our arrival so far...at least for me. Of course, visiting with family here is priceless, but finding a neurologist like Dr. Jan has been a blessing. She just opened up a practice here in Plano called 1CP place where she specializes in  seeing patients with cerebral palsy. I don't know of another neurologist that has specialized in a single condition but this one does! The fact that she is only minutes away from our home is even more amazing.Patients are flocking here from all over just to see her. Why? Because she herself has cerebral palsy and she knows first hand what it's like. She spent over 2 hours with us during our initial visit. I left there SO hungry for lunch and ready to leave and she asked..."Do you have any more questions?" HOLY, WOW! I'm not used to being anxious to leave a doctor's visit! I usually beg for more time. All my questions were answered and then some. I didn't have to write down notes during our visit because they were all transferred to a portal. I took a few photos of Dr. Jan stretching out Frankie's foot (I need visuals for our therapy homework,) and I had to take one of the new duo smiling from ear to ear...We will be seeing her every 3 months and am certain we are in the best hands.

The past few weeks have been crazy...I'm not even going to sprinkle sugar on that. But! I realize the chaos is just temporary, and some of it may just be made up in my own little head. I have had my moments where I feel like I'm overwhelmed, but this is when I have to step back and make time to be alone and thank God for all of my blessings. Mark granted my wish to escape one evening and took Frankie to her cousin's house. That one day away definitely recharged my battery. I was able to bask in the sun at our neighborhood pool and read a book. As I was walking back home from the pool, I heard the sounds of cicadas & some blaring Mexican music from new homes in the area that are under construction. All of a sudden, there was an extra spring in my step...I really feel like I'm home now, and I love it!

Baby steps...it's OK!

Another month has gone by since my last post and a lot has happened. We have put our house up for sale because Mark finally got a transfer back to Texas with his company. We are beyond elated! We have been waiting for this for years and it's finally happening.To top that off, we found our new home after only 2 days of house hunting! Now for the hard part...we just need to sell our house!

Moving to Texas is a dream come true but I'm sad to leave our friends and specialists behind. I will miss the beautiful scenery here that we are surrounded by.I have taken longer routes to  places just to take in the beauty of this area that we now call home. I step outside more often to feel the cool Virginia breeze.I have also found myself hugging people tighter because I know our time here is limited.On the other hand, I have to admit this whole moving thing has made me a tad anti-social. Deep down I didn't want to tell my friends here that we were leaving because I feared they would distance themselves from us. I know I shouldn't feel that way, but in the past I have experienced people acting different when they know you won't be around for much longer. Thankfully, this precious bunch of friends that I have here have been SO sweet and kind after knowing we are moving HOME to be closer to our family.I feel so blessed for that.

Almost forgot! This blog is not about me, it's about Frankie's progress with hemiplegia. Here it is! This month I received a progress report from her school that she attends with mainstream students. After reading the first section, I wanted to throw up.I realized how far behind we are. I later read the part of the report where it grades the student on social skills. OH MY! Frankie's teachers had such wonderful things to say about her. My nausea quickly subsided and turned into a huge grin. I felt so proud and comforted to know that other people recognize how happy, motivated and persistent our little girl can be. All the other stuff (writing her name, putting sets together, etc..) can all be learned. A personality can NOT be learned. Yea, we have a few things to work on, but we can and will accomplish our academic goals!

This Spring we had our follow up with Dr.Romness at UVA. Frankie could barely walk during our appointment because of a growth spurt. Her balance was way off. During a growth spurt, the bones grow faster than muscles which makes the body ache and in our case, can limit movement. Dr. Romness recommended a huge, hinged brace for Frankie's right foot thinking that it would improve her gait. He also recommended an intensive physical therapy program. Huh? I had never heard of an intensive PT program. It's kind of like a boot camp for 2-4 weeks of intense therapy that includes stretching, gait training, etc...

The following business day I was researching places in Texas that had intensive PT programs and we were off to the "Brace Place" here in Fairfax to get fitted for the ha-yuge brace that was recommended. I hesitated because I really didn't feel that Frankie needed it. After all, Dr. Romness observed her gait when she could barely walk and I knew this was temporary. After the casting appointment (photo below) and being told how heavy the brace would be, I called the Brace Place and told them...STOP! Please don't continue with the casting. Frankie doesn't need it. Here I am, faced with another decision but I feel it was the best one.Go with the mommy gut..right?

At PT and OT, it was time for our annual evaluation. Frankie's grades were right below average BUT!!! I was reminded to not look at the grade but to look at PROGRESS. Frankie took the Peabody test. I was in the room and was so amazed at how she can cut with scissors, holding the paper with her right hand! I was also impressed at how she could stack several blocks without them falling.I can't wait for her to beat me in Jenga. =)

A few weeks ago, we registered Frankie for Top Soccer here in Loudoun county and she loved her first practice! Sadly, she won't be able to make another practice for a while...why? Well, Frankie had a little accident at her Aunt & Uncle's house in Texas on April 28th...Mark's birthday. She fell off a step and twisted her right ankle. She was in excruciating pain! She wouldn't let us even touch her leg or foot. We had X-rays done at an emergency clinic and nothing seemed to be broken.There was no inflammation or bruising so I thought this was a good sign?I had been told that sometimes fractures don't show up for weeks, even months so we couldn't rule this out.

The remainder of our week in Texas was tough but thankfully we were surrounded by family. Frankie was unable to stand but she was still her own happy self.
We flew back to Virginia on Sunday and she was still having a hard time bearing weight on her right leg (which happens to be her affected side.) Anxious Mama couldn't accept this. No way.I needed more answers and a crystal ball that could tell me when she would heal. Well, I know I couldn't get the crystal ball, but I took Frankie to a local orthopedic Dr. yesterday and they did more X-rays.They did one on her tibia, which they didn't do in Texas. Nothing seemed broken but the Dr was convinced that there is indeed a fracture in the foot area, not a sprain. The Dr.proceeded to tell me to stop googling after I TOLD her and insisted that she sprained her ankle. Yup. I convinced myself that she had a ruptured or torn ligament in her ankle. I was worried that she would cause more damage if I continued to encourage her to stand and walk. The Dr said to encourage her to walk, as long as she tolerates it.

The next few weeks will be tough, but we will be just fine. Our love tanks are full after seeing Nana, Poppy, aunts, uncles and cousins. I was also able to have a girls' weekend with childhood friends that will continue to keep me fueled for a long time!

Here is Frankie today....We are back to baby steps, but she will be running again in no time. We will continue to ride the wave!

Growing Pains

So much for me saying "I'm going to post on my blog every month." One of my resolutions this year was to follow through with what I say I'm going to do. I guess I'm not off to a good start. I'll try to change that.

We are so happy to finally see the sun and milder temperatures.Frankie had a blast in the snow though. She absolutely loves to walk in it. We built a snowman for the very first time last weekend. Frankie observed patiently and was so happy to see our little Texas snow-lady, even though she wanted an Olaf.

If I could have background music for this post I would choose, "That's just the way it is," by Bruce Hornsby. This week started off a little rough. On Tuesday morning, I stretched Francesca's leg/foot out as usual while getting her ready for school. After doing so, I put on her braces and shoes. She stood up and could barely walk.At first, I panicked. Then, I remembered that something similar happened to her when she was 3.I asked her if anything hurt and she said "No." I checked for blisters and redness on her foot and didn't find anything.I quickly called Mark and emailed Jill, Frankie's physical therapist.

My first thought was to keep her home from school that day, but she was in a great mood (despite getting over a cold)and she was able to walk with a limp, for lack of a better word. Her gait is very distinct anyway, but now it seemed like she was injured. I drove her to school early and spoke to the teachers explaining Frankie's condition.They assured me she would be ok and that the kids weren't going outside to play that day...she would be pretty sedentary. I asked them to call me if she seemed like she was in pain.

The following day I had two physical therapists observe her gait and we all agreed that it appears she is having a growth spurt.This is common for children with hemiplegia during pre-adolescence. As their little bones grow, spastic muscles become tighter and tighter. Many kids are in excruciating pain. Some children will get Botox (Yes, the same stuff that helps with crows feet) to relax the muscles and allow for more range of motion.Massages and constant stretching are suppose to alleviate this pain and help stretch out the muscles that need to catch up with the growing bones they are attached to. We have a pending appointment with our Orthopedic Surgeon at UVA in two weeks and will hopefully get more answers soon. He may suggest bracing her at night. I'm still waiting on a call back from them to move our appointment sooner.For now, I'm using essential oils during our massages and stretching her like crazy!

On a brighter note, Frankie has been making huge strides in the two preschools that she attends and in therapy.One of our biggest goals this year has nothing to do with her affected side. (right side.) It has to do with her left hand.In the mainstream school that Frankie attends, they are teaching the students to write their names.Yes, in preschool! I panicked when I saw all the other kids writing their names so well. So, what did this Mama do? I darted to Barnes and Noble to try to find workbooks and things that I can do at home to help Frankie write her own name.I have several apps on her IPAD to help with handwriting as well.

The workbooks are helping and so are activities involving fine motor skills. I truly believe Frankie was born to be right handed but now she's having to use her left hand to draw,color,write, etc...Therefore, I think it's even more challenging for her to have the coordination to write with her less dominant hand. We are starting by tracing lines...next, we'll attempt to work on writing her name.It's funny, I find myself trying to jump to a goal so quickly.This is a prime example.I suppose it's partially due to peer pressure & social media pressure? I have to stop and tell myself...HEY, CHILL OUT! NOT ALL CHILDREN DEVELOP AT THE SAME TIME! I will add that I'm pretty stinkin' proud of her though for writing an F for Frankie a few weeks ago!

Private Physical Therapy has been going great except our angel, Jill (pictured below) retired a few weeks ago.She helped teach Frankie how to walk amongst many other things. She was our biggest advocate and assured us Frankie would learn how to walk without a walker, which was recommended by our Physiatrist. She was right! We are very sad to see her go,as you can see in Frankie's long face; but, we'll remain in touch with her indefinitely.

A couple of milestones we have made these last few months are climbing on a chair AND jumping!! We hope running is in the near future...I'm confident it is.We now have a new private PT, Amanda, who Frankie and I have known for a while. She has such a soft and sweet disposition....what a perfect match!

Frankie & Amanda

In OT, Frankie continues to work on grabbing things with her right hand. Weight bearing is very important too so we do a lot of activities where she has her right hand on the floor, and she reaches for toys with her left hand.(pictured above) We continue to do ESTIM at home to help activate the muscles in Frankie's right arm and she's been very tolerant...as long as she has play-doh to play with.

We are still blessed to have Catherine, our private OT working with Frankie.I praise her because it takes A LOT to be an occupational therapist. You have to have a lot of patience.A LOT! This past month we have worked on many things including side stepping and fun yoga poses.We recently painted an Easter egg on paper with righty. The fun never stops!

Francesca continues to get PT, OT and Speech at her IEP school weekly.She adores her therapists there.Unfortunately and fortunately, we were told that Frankie may not qualify for the IEP program next year. This means she will be mainstreamed 100% of the time during the school year. There will be a resource teacher assigned to her and she will be pulled out of class for PT, OT and Speech.I say this is fortunate because this proves there has been significant progress, but unfortunate because I still see a few developmental delays...I know we'll get there.

So, our journey continues. We are just riding the wave! We have our good days and we have our "blah" days, just like everyone else. Every day I choose to have a good day...it's my choice. If something is on the verge of bringing me down, I try to stay positive.I can't tell a fib though...it's been rough week seeing a lot of our progress disappear overnight. Frankie wants to chase Paco and play outside but her legs aren't allowing her to. It's frustrating.Growing pains are NO fun! Gotta keep our chin up...it WILL get better! I would now insert the WHIP IT song by Devo. =) Crack that whip!!!