Anna's First Laser Treatment

My youngest daughter, Anna, is almost four-years-old. Last November, she was diagnosed with Basal Cell Carcinoma Nevus Syndrome. You can click here to read more about that. It has affected her body in many ways, and you can click here to read more that, too.
Yesterday, we took Anna to Le Bonheur Hospital in Memphis for her first laser treatment. The CO2 laser removed the basal cell cancers very quickly. Dr. Fleming zapped 75 spots in 25 minutes! I'm blogging about our experience with Gorlin Syndrome (another name for BCCNS), because it is a rare genetic condition and there just isn't a lot of information out there. Maybe God will use this to help another family.

Here we are on the way to Memphis - a four-hour drive! We had to circle the BCCs (little cancer spots) before we arrived at the hospital.

Thank you, Lord, for tablets! We watched Monsters University on the Kindle while waiting to go back.

You can see here the little circles where the doctor will use the laser to remove the cancer spots.

I must say that Le Bonheur has the BEST toys! When we first went back into the OR area, they took us to a huge wall filled with Melissa and Doug toys! Anna picked a mermaid.

Kisses from mama!

We drove for four hours, then we waited in the hospital for almost three more hours before they took us into the OR. The whole procedure took a total of 25 minutes!

The cancer spot is now replaced with a little red hole. She's not in any pain, and the scarring will be minimal, so they tell me. We'll come back again for the same laser procedure next year. Her body doesn't know when to stop making cells, so the BCCs will keep coming, and we'll keep having them zapped off. When she's older, close to 20, the BCCs will get more aggressive and the laser won't be effective anymore. We'll cross that bridge when we come to it. For now, we're thanking God for the laser!

What a trooper! Anna did a wonderful job, and she's back to her old self today. Thank you, Lord, for your goodness and mercy! I truly felt my Father carrying me through this whole process. It was, and still is, very hard on my heart to see my baby with tiny red holes all over her body, but I know that God is good, and I'm thankful for modern medicine that zapped those little cancers right off of her.

And thank you for letting me share my precious girls with you; it helps me to get my thoughts out. I hope you have a wonderful rest of your day! And if you have little ones, hug them tightly - they really are blessings from our loving God.

Anna Update

I haven't posted about my sweet baby girl in a while, so I thought I'd share a little Anna update.

If you've been reading the blog for a while, you know that Anna has Gorlin Syndrome, which is a rare genetic disease in which her cells don't know when to stop making more cells. She's had basal cell cancer spots removed and more are found each time we visit her dermatologist (11 last visit). No fun. Her condition has also affected her mental and physical development in different ways. And just this year we were told she has Sensory Processing Disorder; she seeks out sensations that she has trouble feeling on her own (and that's a whole 'nother post). 

God's Touch

My sweet baby has started gymnastics!

I've received some much-needed encouragement lately from some friends about Anna and our journey with Gorlin Syndrome. I really feel that God is prompting me to share this with you, so here we go:

First, I've been having a hard time lately with Spring. Yes, it's gorgeous, and the weather is beautiful. However, whenever someone says, "Enjoy the nice weather!" I want to scream. How am I supposed to enjoy the nice weather when my baby can't go in the sun? Thanks for reminding me of what we can't do!

Okay, yes, I know these people are well-meaning and most don't even know about Anna's condition. And, it's just a common thing to say when you don't really know what else to say. I get that. So, I don't stay mad but for a second.

But, it's still hard.

So, the other day, our CC group was having a Park Day (Anna was in school), and a sweet mama asked how Anna was doing. We talked about it, and then she said something so amazing and true that I'm sure God put those words into her mouth Himself:

This might not be the life you expected for Anna, but it's not God's Plan B. God doesn't have a Plan B. This is His Plan A for your life and for Anna's.

Wow! Thank you, God, for speaking through my friend!

Just a couple of days later, another sweet friend called me on the phone and asked about Anna. Well, this time I broke down (didn't have to keep up appearances like at the park). I told her that I'm just ready to get over it, accept it, and stop being so emotional about it. I'm not depressed, I'm not sad, and I've never once thought, "Why me, Lord?" I'm just ready to move forward and to stop crying about it.

Once again, I could hear God's voice through her next words to me:

Maybe you're not supposed to 'get over it' so soon. If you could do it in your own strength, you would have done it by now. Jacob wrestled with God and God touched his thigh and made him limp the rest of his days. God has touched everyone somewhere to make them dependent upon Him. For you, it's your child. For others, it's money or child-bearing, or something else. But He wants you to depend on Him and not yourself to get you through this.

Oh, friends, I was bawling by this point. Wow! Once again, God spoke through a friend to get His message to me. I have been trying to be strong and buck-up all on my own. All this time, God's been with me, waiting for me to reach out to Him. I am always so humbled and awed when I can really sense God's hand at work in my little life. 

So, I'm working on memorizing some key Bible verses:

And he said unto me, My grace is sufficient for thee:

for my strength is made perfect in weakness.

Most gladly therefore will I rather glory in my infirmities,

that the power of Christ may rest upon me.

2 Corinthians 12:9

and of course

Trust in the LORD with all thine heart;

and lean not unto thine own understanding.

In all thy ways acknowledge him,

and he shall direct thy paths.

Proverbs 3:5

And when I turned in my Bible to the passage my friend referred to, I found that I'd already camped out in Genesis 32 before:

You can click on the picture to enlarge it. I'm almost 100% positive that everything you see written is taken directly from Ann Voskamp's book One Thousand Gifts. Good stuff.

So, that's what's going on with me right now. . . in my heart. 

If you ask me how I am, I'll probably say fine, and I don't mind your asking (and I might even cry just a little). But please, don't say how nice the weather is today. Not just yet. ;)

Summer Schedule

Well, it's officially Summer in the Stroud home - almost. ;) Mission Friends and dance are wrapping up, but we're registering for summer camps and activities, so I'm pretty much calling it Summer now.

I have lots of things I'd like to accomplish during our Summer break, and I'm starting to feel a little overwhelmed. So, Mary and I created our Summer Schedule this morning:

We decided together in which order to place our 'events,' and then when as we move down the schedule throughout the day, we'll push the event to the Done! side.

Everything on our daily schedule is pretty self-explanatory, but I did want to expound on a couple of things, just in case you're curious.

Proverbs Time has become a very special part of our morning. After the hubs takes Anna to school, Mary and I sit on the living room floor, open our Bibles to the Proverb of the day, and I read while she follows along. We'll stop and talk about certain verses that might mean something to her. A few days ago she really latched on to the verse in chapter 22 about not being friends with angry people. She's talked about that for a few days now! After we read, we pray together, and then we watch what we just read. Hello, visual learners! Remember that marriage retreat the hubs and I went to last month? While we were there, we picked up Dr. S.M. Davis's DVD set of Picture Proverbs.

The entire book of Proverbs is narrated with a picture for each verse (and sometimes sound effects and beautiful classical music). Mary and I love it, and she's even asked that we do it everyday except on special occasions like birthdays. Ha! So, that's why I put it in our daily Summer schedule.

For our CC review, we're using the memory work system from Jaime Gravitt at Homeschool Story:

I downloaded the cards, printed, and laminated, and I'm loving it! If you're looking for a way to systematically review all the memory work and prevent brain drain this Summer, go check it out!

Writing With Ms. Marnie is our handwriting lesson each day from TV Teacher. Ms. Marnie has wonderful five-minute lessons for each letter, and she teaches a cute little chant to help us remember how to write the letters. Up and around, back up, and down is the chant for lowercase 'a.' 

That's about it for our schedule. Summer is looking to be a busy time for us, and it all started earlier this week. Can I share what's going on?

I might ramble. 

I probably will.

Well, we had Anna's first formal evaluation meeting on Monday at her absolutely fantastic preschool. This was the big meeting with all of her therapists, teachers, and all the reports and test scores. I was a little surprised with their results. I know these are just test scores, and scores don't mean anything. I know that. But, all the formal evaluations by trained professionals confirmed that Anna is in fact a 'special needs' child. Gorlin Syndrome has affected her physical and mental development in ways that I wasn't really prepared for, I guess. I don't know... if just feels... I'm not sure. I don't know how I feel about it all. 

Mary and I went to our CC's Park Day on Tuesday, the day after the meeting, and I just couldn't stay. I started feeling very sad, just all of a sudden really. Sad that Anna couldn't be with us enjoying the beautiful sunny weather. Sad that she has so many obstacles to face in life. Sad that I don't know what the future holds for her (pity party, I know, right). Everyone expects their kids to grow up, find a job, move out, get married, etc. Will Anna be physically and mentally able to do those things? We don't know. But, I do know one thing - God is teaching me to fully rely on Him every step of the way. It really becomes a day-by-day, step-by-step reliance. I know that He is sovereign  and He created Anna exactly the way He wants her to be. And He creates everything beautiful (Eccl. 3:11).

Anna's therapists recommended some extra activities to help her, so we've been busy getting her into gymnastics and other things. So, this is what sort of prompted the new schedule. Moving things around and organizing things is how I deal with things sometimes. I think it's about finding something that I can actually control when I feel out of control. Know what I mean? I can control (to an extent, of course) our daily schedule in our home.

Tomorrow morning we go in for Anna's first PDT (photodynamic therapy) to kill the cancer spots on her face. Please pray that she will sit still for the 17 minutes it takes for the light to do it's job. She'll be very sensitive to light for the following two days, so we'll be staying inside and watching her favorite movies. I'll post an update when I can. Thank you in advance for your prayers.

Here's a cute, albeit very blurry picture of my beautiful blessings:

God bless you, friends.

UPDATE: Anna's doctor didn't need to do the procedure today! Her spots on her tummy were very small, as were two spots on her face. Instead, we're waiting to check them again in the Fall! One spot on her nose even went away! God is so good! Thank you for keeping our family in your prayers. :)

Anna's First Surgery

If you don't know already, my sweet Anna has Gorlin Syndrome, a very rare genetic condition where her body's cells don't know when to stop growing. She has lots of small skin cancers (basal cell carcinomas) all over her body. Today she had her first surgery to remove two of the larger cancer spots. It was a quick procedure, a 'burn & scrape,' and that's exactly what the doctor did. I held Anna, and a very, very thoughtful friend entertained her while the doctor took what looked like a razor blade and cut out those spots (picture moles). Then the doctor took a mini soldering iron thingy and burned the area to create an instant scab and prevent infection. The whole thing took less than 30 minutes, but it was pretty traumatic for me. Anna said, "No, doctor, please, no," while she was doing it. Tears! Oh, I cried, Anna cried; thankfully my sweet friend kept trying to talk to her, encourage her, and distract her.

Here's my precious girl before the surgery:

And, here she is in 'recovery' at Sweet Frog, her favorite frozen yogurt place. Ha! She had stopped crying even before we left the procedure room. She's such a trooper!

She's in preschool at Rise, and it has been just a blessing. Anna is talking so much more, and I can tell that she's really benefiting from all the therapies built into the preschool curriculum.

Thank you, Lord, for always providing!

Here's her farm that's hanging on the wall outside of her classroom:

Anna the farmer! Isn't she the cutest thing?! Each day they add a new piece to the farm. This morning before her surgery, they made a pigsty with pudding paint. How fun!

God has also provided us with some new friends who are also affected by Gorlin Syndrome. This family lives very close to us, and they have been so generous with their time in sharing their experiences and encouragement.

Y'all, I just cannot say it enough:

God is so good!

Anna Update and New Maps

It's been a while since I've done an Anna update, so I thought I would fill you in on what's been going on.

We went to the St. Jude clinic in town for a second opinion on her treatment for her basal cell skin cancer. First of all, it was just so weird to go to St. Jude. I'm sure one day I'll be a-o-kay with this Gorlin Syndrome thing, but I'm not there yet. Anyway, the doctor was wonderful, and two really great things came out of the appointment. First, the doctor got us in with a local dermatologist - and soon! No more driving a couple hours to Birmingham to see our specialist. Nice! And the icing on the cake of our visit was that Anna was NOT the first person with Gorlin Syndrome that she's seen in Huntsville. Yes, there is someone else with this extremely rare disease right in our own backyard! The doctor called the little girl's mom, and she's going to call me very soon to meet up and compare notes, so to speak. And this new family goes to the same dermatologist that we'll be going to in town. How great is God?! He knew we needed this connection, and He always takes care of us. Thank you, Lord! I'm very excited about the seeing the new derm. because Anna has a bunch of new bumps, which I think are basal cell carcinomas (skin cancer), but I don't know for sure. Her treatment for her cancer spots is this cream that kills the cells, so I sure don't want to put that stuff on good skin. I want the derm. to tell me yes or no for sure on those new bumps.

So, that's the big update. Happy news for the developments from St. Jude, and not-so-happy news for new bumps. But, you know what? God is in control. And He is good!

In other news, we recently went to a Learning Expo at the U.S. Space and Rocket Center. I love that we live so close to this place!

The girls enjoyed playing with the fun stuff while we looked around. Pretty neat! CC had a booth right next to Anna's new school's booth! I really should have taken a picture.

Funday Monday was yesterday - woohoo! We reviewed some material before The Challenge. Mary loved the Gallon Man activity from Crecia's lesson plans at CCing it one day at a time. I laminated the pieces and added velcro dots.

One of the subjects we really need to work on is Geography. We were doing so well at the beginning of the year, but we slacked up during our long break. I dusted off our homemade review book, but we have two problems with it now. If you used the Map Friends Review Book that I made for Mary, I'm sure you've noticed that some of the locations are missing or have changed starting in Week 11 (sorry about that). Apparently, CC has changed up the memory work a little since the last Foundations Guide; I should have checked the maps better when making the book (again, my apologies). The second issue with the review book is that Mary can now read (yay!), so having the names of the places on the maps is terrible for review. I decided that we needed to revamp or beloved Map Friends book. I'm going to keep everything in the book as it is, but I'm going to add some maps I've pulled from C3:

I've laminated the pages and added velcro dots, so we'll still use our map friends. I'm going to take these pages and the original review book back to Staples tomorrow and have them put it all together in one new book. Easy cheesy! You can find these great maps on C3:

file name: Geography Semester 1 with blanks.pdf

file name: Geography Semester 2 with blanks.pdf

user name: kkillingsworth

Kkillingsworth also has some really great file folder games for the upcoming weeks. If you're looking for some fun review, definitely check out her stuff! We love it!

Speaking of maps and C3, thanks to the Knox family, we've discovered a new way to review Geography:

With paper clips!

(please excuse these sideways pictures... oops!) 

This is a handy little book with all of Cycle 1's Geography memory work ready to go for independent review. Yes, that's right, independent! First, you print out the maps, then you take a paper clip and punch a hole for each location for that week. Then you write (we used pencil so it wouldn't show through) the names of each location on the back next to the hole. Then you laminate and repunch (the hubs used the sharp end of a screw). I got the book bound at Staples for under $5, and viola! Your child puts the paper clip where she thinks the location is, then she turns it over to see if she was correct. How cool! Even my four-year-old can do it by herself! And playing with a paper clip is pretty fun for her. ;)

You can find this really neat set of maps on C3:

file name: C1_Geo4th_wk01-24_MapNPaperClip_WklyReview.pdf

user name: KnoxFamily

Here she is in action! 

Speaking of C3, I've pulled TONS of great stuff off of there lately. I'm so thankful that CC has made this resource available and that mamas are willing to share their wonderful creations! I'm actually going to put together a post of some of favorite C3 stuff soon. There is just never enough time in the day, y'all! And I still haven't gotten a chance to work on Mary's fairy review game again. Eeek! Soon, soon, soon. I have until our next Funday Monday to pull it together.

I know this post has been a little-bit-of-this and a little-bit-of-that, so I'm just going to throw one final thing into the mix:

My girls absolutely LOVE this - ha! Anna likes it the most, and she always asks to watch the kitty cat. Too sweet! She even sings along with Ginger! Love it or hate it, you'll have to admit it's pretty cute (but Ginger the Cat goes from cute to annoying speedy-quick, so watch sparingly.  ;)  ).

Good night, friends!

The Hardest Thing

This post is not about CC or homeschooling. Actually, it's about the opposite...

On Monday, I will take my sweet and special Anna to a wonderful new preschool for sweet and special kids, and I will leave here there from 8 a.m. until 2:30 p.m. And I will do this Monday through Friday, year-round.

This is, by far, the hardest thing I'll have ever done.

As a homeschooling mom, I feel called by God to educate my children at home, focusing on our Christian values. I never, ever thought I'd be buying a lunchbox and nap mat and dropping off my kid somewhere for almost the WHOLE day. What in the WORLD would make me do this now?

Well, our amazing doctor recommends speech and occupational therapy for Anna. She believes that this is the year for Anna. All the studies show that early intervention is the most beneficial, and she thinks Anna can get 'caught up' to normally-developing children if we really get into therapy. We have a few options here in Huntsville, but most of them will help Anna for 30 minutes, once a week. Not so good. However, while we were reviewing our choices, one new preschool (though we were certainly not looking for a preschool) caught our eye - Rise School of Huntsville.

Click here to read a great article with tons of more details.

We were excited about the intense therapy embedded into the learning opportunities. They do speech, occupational, music, and physical therapies all in the classroom. And how cool that it's 'special needs' kids right alongside 'normally-developing' kids! And, 90% of the special needs children in the flagship school in Tuscaloosa, Alabama, graduate into mainstream kindergarten! Awesome!

So, while this will be so, so, SO hard for me, it will be the BEST thing for my little girl. 

We went today to meet the director and teachers. The director is awesome and completely transparent about policies and all the details. I really liked her. Plus, she's a Christian! Anna's teacher has a Master's in Special Ed. and is working on her Doctorate. Nice! And the teacher's assistant has been working in special education for over 11 years, and I believe she comes from the first Rise School in Tuscaloosa (where the waiting list is outrageous). Anna really clicked with all of them, and they were very accommodating about Anna's need to stay out of the sun. I know this will be a great experience for her, even if it breaks my heart right now.

Let me share a quick story from another Rise School, one that really made an impression on me:

A dad goes to observe his Down Syndrome son in his Rise class one day. His son isn't crawling yet. The teacher and other children finish their Circle Time and move to the table across the room for the next activity. The dad watches them leave his son on the floor. He watches and gets madder and madder that the teacher has left him behind! There's nothing around him, no toys to play with. What is that teacher thinking?! She knows he can't crawl; GO GET HIM, he's thinking. As he's about to bust in there and save his son, he stops. He watches his son crawl for the first time across the room to join his teacher and friends.

That's why I need a place like Rise; I would totally have been like that dad. I know I've been easy on Anna in certain areas because of her condition. She has cancer, leave her alone! Don't you understand what pain is ahead of her?! Who cares if I still do _____ and _____ and _____ for her! And I know in the end I'm not doing her any favors. . . believe me, I know.

Yes, I'm thankful for a place like Rise.

I know some of you may disagree with our family's decision, but we have prayed long and hard about it, and we feel that God has really worked this out for us. The timing couldn't have been more perfect, either. There was still a spot available in her class, while other age groups already have waiting lists (although there will be only one class, Anna's age group, right now). So, it's a happy and sad feeling in our home tonight. One minute I'm fine, the next I'm a wreck. But, working moms do this all the time; I'm certainly not the first to experience these emotions. I'm just so thankful to God that everything is working out the way it is; Anna will get the top-notch therapy and preschool education all in one. Then, when she graduates, she'll come right back home and do CC with her big sister!

Strength. That's what I'm praying for now. Strength to do what's best for her.

Isn't it crazy when God takes you in a totally different direction than what you had planned, or thought HE had planned for you? But I know that He knows best, and like always, God is good!

MRI Results

Clean MRI!

This time went much, much better than the last attempt. They gassed her before sticking her with the IV, so she was out very quickly. She didn't even have any big reactions to the anesthesia, which was a blessing. 

Big sigh of relief.

I've been saying over and over that God is so good. And He is. But, I've had to ask myself if I would still be saying that if her MRI came back with signs of brain tumors. And the answer is yes. Even if her scan revealed multiple issues, God is still in control and God is good. However, I'm very thankful that it turned out clean this time. :)

We meet with our regular doctor next to discuss Anna's overall care plan and discuss possible therapy options (speech/occupational). She's made great strides lately, so that's starting to matter less and less to me. But, our doc said that now is the prime time to explore therapy, while she's so young. So, we'll give it a shot!

In January we meet with an orthopedic doctor to get her spine xrayed. Scoliosis and things of that nature can be part of Gorlin Syndrome. And that's the last thing we have to do! Then it's just taking care of the seven spots of skin cancer she already has (two more spots popped up on her face and leg), and watching for any more. Jaw cysts are a big issue, too, but those don't usually occur in Gorlin patients until ages 7-10. 

So, I feel good. 

God is good.

However, things have changed a little already within our family; I'm guessing it's in a good way. Mary was supposed to spend the rest of the week at her Nana's in Mississippi, something she did this past summer. But yesterday morning as we were getting ready to go, she flipped out. She said Anna would miss her, and she refused to go. I hate that she missed what was sure to be an amazingly fun week, but I'm glad that she feels such a strong attachment to her little sister now. She also has been sleeping on the floor of our room the past few nights. So, something is going on with her, and I'm just going to take it to God in prayer. I'm praying that she will feel safe, secure, and loved. I feel silly that I didn't realize how all these things going on with Anna might affect Mary. But I know that God will use this for good.

I have new fun things that I'd like to write about, and maybe later today or tonight I'll get a chance. The girls have stopped napping - AAAHHHHH! So there's not much free time during the day. I'm working on having a mandatory quiet time instead, which will have to wait until tomorrow, because Monsters Inc. 3D premiers today, and we love us some Mike Wizowski!

What We've Been Up To...

Since my last post . . .

. . . Mary has started playing 'school,' although she calls it CC. Ha! I remember doing this when I was little, so I think it's absolutely adorable. In the picture above, she 'organized' all her students for a class photo . . .

. . . we got a bean bag, a big one! This a five-footer from Ultimate Sack, and it's sooo great! It came with a free foot stool, which you can see in the back. We're seriously considering getting another one so the girls don't fight over it, that's how awesome this thing is . . .

. . . we put the tree up and decorated for Christmas. The girls know the rules about not touching the ornaments (see video here!), but Frisky, well, not so much . . .

. . . Nana (my mom) came to visit for a few days (woohoo!) . . .

. . . Mary wore a Santa hat for the first time . . .

. . . the girls played at Grandmother's house . . .

. . . and Anna worked on her camera-smile! 

Notice how there's not one picture of us doing school stuff. Oh, how Anna's diagnosis has helped me to mellow-out! Now I'm working on finding a balance. I can't just let everything go and blow off all the work we've done, but some things don't seem as important as they once were. My heart is just in a different place at this moment, know what I mean? But I do need a balance.

And, a balance will come.

School is certainly important, and the bonds we're creating while spending time together, whether it be doing school or playing with dolls, is what really matters to me now. God is so good, y'all. He's letting all this happen at just the right time. Mary's only four, so taking time off is not an issue. And with this being Christmas time, and everyone else not doing school, it makes me feel a little better about not hitting the books with my big girl. 

In related news . . .

Anna's MRI, which was scheduled for earlier this week, did not go as planned. We drove two hours to Birmingham, denied this precious girl food and drink for so many hours, and then they couldn't even do the procedure. They have to put her to sleep for the MRI, so they tried to put an IV in to administer the 'magic milk' that would put her in a deep nap. Each time they tried to stick her, the vein would blow. Oh, friends, this was just torture, torture, torture on everyone. We were not in the room with her at this point, but we could hear everything. I can't tell you how many times she cried out for me. Terrible, terrible. So, they ended up not being able to do it. We've been rescheduled for this Monday at a different hospital that has IV therapy, whatever that is. They've assured us that this will work and that we will have the MRI done that day. Please, please keep us in your prayers on Monday. The MRI will check for brain tumors and any abnormalities, which sometimes, but certainly not always, go along with Gorlin Syndrome. In the meantime, we've been staying in the house for-EVER because she has to be healthy to get the anesthesia. It just so happens that there is a flu epidemic (no lie!) in Huntsville right now. Needless to say, we ALL have cabin fever.

Thanks to all of you for your prayers and encouragement. I hope your holidays are off to a great start, friends. Hug your littles extra tightly today!

Anna's First BCCs

We went to the pediatric dermatologist in Birmingham this week, and she confirmed our suspicions. Anna already has five basal cell carcinomas (BCCs) on her tummy and back - skin cancer. Already?! I mean, I knew this was part of Gorlin Syndrome (which is also called Basal Cell Carcinoma Nevus Syndrome), but I just didn't expect these little suckers so quickly. But, the doctor said they're okay as long as they're not showing signs of growing or bleeding. So, she prescribed a cream to put on these and any others that pop-up, and then we'll have them removed when she's a little older.

Okay, I was going to crop this picture above, but how cute is this belly! Ha! You can see the little red spot right there, that's a BCC. There are three more on her back and another on the other side of her sweet tummy.

People ask us all the time how we first knew something was different with Anna. This picture above explains it. See those dark hairy patches on her arm? She's had that patch since she was four-months-old. Other similar patches have popped-up all over her body (thankfully none are smack-dab in the middle of her face yet!). This was our first clue that something was going on with her little body. We've decided to post this picture for a very specific reason. When we were trying to google what these hairy patches could mean, there were no pictures on the internet of this (that we could find). None! It turns out, these patches or tufts of hair are a very rare manifestation of Gorlin Syndrome. Our pediatric dermatologist checked her 'literature' and called us back with this possible diagnosis (which turned out to be correct). She mailed us some information on Gorlin along with a study done that included pictures of three people with hairy patches identical to Anna's. That's when we knew it had to be Gorlin Syndrome. While we were waiting for the genetic test results, we just knew. What else could it be? Since then, we've tried to find this study on the internet, but it's only available to doctors who have a subscription to something-or-other. So, in an effort to help someone else with mysterious hair patches, here's what one looks like in a Gorlin patient.

Well, what's next? Anna has an MRI of her brain scheduled for next week to check for any tumors or cysts. These are also part of Gorlin Syndrome, but they're very rare, so we're not too worried. In the meantime, we have to tint all of our windows to protect her from the UV radiation, which will speed up the BCCs, and we have to pretty much avoid the sun from the hours of 10 a.m to 4 p.m. Other times of day she'll need sunscreen, protective clothing and sun glasses, and a sun hat. 

It's a little overwhelming...

But my mom had some encouraging words. She said that this first year it will be hard, of course, to adjust to such a lifestyle change. But after a year or so everything will just be part of our routine that it won't seem like a big deal. I'm sure she's right.

And things could always be worse. Always.

And God is so good. Always.

I know He has a purpose in all of this, and I'm so thankful to be Anna's mommy. She's such a loving girl with a beautiful personality. She and Mary are really getting along well these days, and my heart just feels so full of thankfulness. Not always, like I know it should, but your prayers are certainly being felt right now. And what a wonderful God we have; He loves Anna more than I ever could, and He's going to work everything out according to his plan. Jesus, take the wheel.

A New Direction

Well, yes, I'm still here. It's been a little while since I've had an update to share, but I've enjoyed being unplugged for a short time. (Sheesh! It's only been a few days, but I really feel like it's been forever!)

I've been thinking about this blog and what I want it to be. I read somewhere how a good blog should have a mission statement and a purpose. Hmmm... well, I guess this blog won't make the cut. I have no mission statement to share, no inspirational motto to rally the masses. I'm not a motivational speaker; I'm just a mom. All I want to do is share my heart. I want to share pictures of my kids for their grandparents to ooh and aah over. I want to share funny moments that I can look back on one day and remember. I want to share my successes and failures, so my girls, whom I'm assuming will read all of these posts one day, will know that I tried. Nope, no mission statement here. 

However, I do intend to take this blog in a slightly different direction from when I initially began it earlier this year. I'm still going to talk about homeschooling with CC and post our activities and weekly plans. But, I'm also going to keep you updated on our life with Gorlin Syndrome. Anna getting that diagnosis was a game-changer. It's a very rare genetic condition, so I'm going to post what's going on with us as we live with it in hopes that our experiences can help other Gorlin patients. Right now, I know of only one other person in Alabama who has been diagnosed with it. If anyone else is out there in our state, please leave a comment and connect with us. I considered starting a separate blog just about all of this, but I really don't need another thing to keep up with, know what I mean?

Well, I have lots of other posts rolling around my head, but I'll save them for another day. I just wanted to send a little shout-out to let you know we're all okay and that I still plan to update this little space.

I'll leave you with a funny video of Mary at our last CC meeting for the year on Tuesday. Her class is rehearsing for their big presentation, and Mary improvs her own hilarious solo at the end of the Greek gods and goddesses song. And check out her hand motions! Love it! And it's so funny when the other kids turn and look at her at the end of her 'solo.' Priceless! Musical theater is soooo in her future! ;)

More ramblings coming soon!

A Little Blog Therapy

How much should I share with you about what's going on with me? I say 'me' because Anna is doing fine right now. Yes, she's been diagnosed with a very rare genetic syndrome that's not going away. She'll most likely get skin cancer, tumors in her jaw in puberty (great time for that, right), and a myriad of other things, but at this moment, things are good. No tumors, no cancer yet. Thank you, Lord.

But, as her mom, I'm having a hard time. Maybe my hard time can help someone else who's having a hard time, too. So, let's just crack open my heart for few minutes, would that be alright?

Well, we had our Mommy and Me ballet class this morning, and it did not go well. She sucked her thumb and did nothing most of the time. She gets very upset when the teacher lays on her tummy on the floor to do exercises (Anna thinks she's hurt, it's the sweetest thing ever), and she doesn't know how to jump yet (yes, I know this is not really a big deal, I get that). I know I got some concerned looks from the other mamas, and one little girl coiled back when Anna touched her arm. Sigh... I couldn't look any of the other people in the face during class, and I left in tears. What is my problem?! My emotions are a rollercoaster, and I feel like I should have this together by now. But I'm not even close to 'together.' And I feel guilty when other people think Anna's fine and I don't; am I looking too closely and over-analyzing?

After waffling back and forth, I am coming to terms that she is, in fact, special needs. She just is. I need to accept that and start from Square One. Does that mean I'm going to have lower expectations for her or not challenge her? No. It means my expectations for Anna will be tailored to her, not to the average almost-three-year-old. Any 'What Your Child Should Know in ____' books are out the window. I think I was getting embarrassed in ballet that she wasn't doing what the other girls were doing, and she's one of the oldest ones in class. If I accept the fact that she's unique (I know, God made us all unique, but you know what I'm sayin'), I won't compare her to the other girls. Instead, I'll focus on what SHE can do, not what someone else thinks she should be doing. Sounds good, huh. Yeah, that's my brain talking. My heart will tell you something else. My heart will tell you that it breaks for the moment when she's older and realizes that she's not like everyone else. My heart hurts for the challenges we will face together as part of Gorlin Syndrome. 

But what does God say?

About the heart, God says it's deceitful (Jer. 17:9). Okay, so I can't trust what my heart is saying. Yes, it's going to be a rough road, but let's not have a pity party. Lots of people have it worse off, and at least I have a God who will never leave me or forsake me. The Bible also says that I shouldn't let my heart be troubled (John 14:27). Okay, that's good...

About the mind, God says I have the mind of Christ (1 Cor. 2:16). Yes, good... And that God will keep me in perfect peace if my mind is stayed on Him (Isaiah 26:3). Oh, peace, yes, that's what I want. And Phillippians 4:7 says that the peace of God, which passeth all understanding, will keep my heart AND mind in Christ Jesus. Wow! That's some good stuff! Hey, are we having Bible study over here? ;)

And I'm clinging to Romans 8:28 as well, which says

And we know that all things work together for good to them that love God...

For good. All things.

We go for Anna's MRI on December 11th in Birmingham. They'll look for brain tumors and some other stuff. I don't know what God has planned, but I know that He does, in fact, have a plan. And I know He loves me and Anna, and He loves you, too.

For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. ~ Jeremiah 29:11 (yes, I'm a KJV girl)

Well, I may have shared too much. You may think I'm a horrible mommy, that I'm in desperate need of therapy (wait, isn't that what a blog is for?), or whatever else. I promise I'll get back to blogging about CC sometime, but thanks for sticking with me through this impromptu therapy session. ;)

My brethren, count it all joy when you fell into divers temptations; knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.

James 1:2-4

Thanks again for your prayers, and God bless you, friends. 

Wait!

Y'know, I was just reading this again, and I don't think I tell you enough of the good things about Anna, just her problems. So, very quickly, Anna is the most loving person you'll ever meet, she absolutely adores her big sister and animals, and she bobs her head and dances to any music she hears. She is a blessing to me and our family, and I can't imagine my life without her. Just so you know... :)

Test Results

Isn't she sweet!

Well, my adorable little girl officially has been diagnosed with Basal Cell Carcinoma Nevus Syndrome (BCCNS), also called Gorlin Sydrome. It's not life-threatening, but it is life-changing. There's a mutation in her tumor-suppressing gene, so she's very susceptible to basal cell skin cancer, and 90% of Gorlin patients will develop jaw cysts, among other things. So, we won't be out in the sun from 10 a.m. to 4 p.m. Doesn't that seem insane?! It does to me. But that's our life now, and it could always be worse, right? If you're interested in learning more about this rare genetic condition, you can click the link in the first sentence. It's strange...

my head was prepared for the news, but my heart just wasn't.

I'm still processing everything.

Within the first three hours of finding out, we already had appointments set up for the dermatologist, cardiologist, dentist, and we're waiting to hear about her MRI appointment. Gorlin Syndrome can affect brain development, and the MRI will let us know if something is different; this may shed some light on her developmental delay. 

But I'm still processing everything.

One minute I'm fine. The next I'm a basket case. Sigh...

I know that God has a plan, and that He will use this for His glory. But I just have to let it work out in my heart for a while.

Since Gorlin is a very rare condition, I've decided to spend a little time posting about it as we start this new journey. Hopefully we can help, encourage, and connect with other Gorlin families. 

Still processing...

I want to thank you all for your prayers, encouragement, phone calls, and emails. They were and are appreciated, more than you know, friends. More than you know. And we'd still love your prayers as we continue to process, adjust, and find our new normal.

God is good. ALL the time.

Little Ballerina

Anna always cries big crocodile tears when Mary gets to go to ballet and she doesn't. Well, I finally decided to sign this poor child up for her own ballet lessons, and we started yesterday! Anna and I are taking a Mommy and Me class at the local ballet school, and she had a blast!

It was great, too, because we already knew the teacher and almost half of the girls are also in Anna's music class on Fridays. But, I'm finding that anytime we start something new with other children Anna's age, it takes a little bit of time for me to get adjusted again to the differences that I notice between my child and the others. I keep going back and forth, too. Is she 'special needs,' or is she just developing at her own speed like every other child? When we're home, I think she's just like everyone else, except that her facial features are a little different. But when she's around others her age, like yesterday at ballet, the differences slap me in the face again. I just don't know! God is definitely trying to teach me patience. We still don't know what's going on with Anna yet, medically (if you're out of the loop, see this post). The test results could be back any day now; it's officially been over eight weeks since her blood was taken to the lab. But, the lab is Maryland, so I'm expecting a delay due to the Storm. We were invited to go play at the park today, but we had to decline. The park is in the sun, and it will be the middle of the day. Sigh...  But, I am thankful to our Creator for letting me be Anna's mommy, and I'm thankful that she has a heart full of love. She gave each new friend a nice, sweet, gentle (woohoo!) hug before class started yesterday. She may or may not be 'special needs' at this point (I'm obviously not good at evaluating stuff like this, and my emotions go all over the place - not too objective. ha!), but this little ballerina certainly has a special place in her mama's heart. God is so good!

Ramblings From my Heart

My friends will tell you that I have it all together.

I don't.
(and they'll tell you that I'll say that, too. ha!)

But really, last night was hard.

I teach Anna's Puggles class at our church on Sunday nights, and I absolutely adore each child in there. I especially love being able to have extra time with my little girl and see her interact with others her age.

Seeing her interact with others... last night it really hit me...

As I was carrying her out of Puggles back to the sweet ladies who keep the nursery (Anna will be three in January, by the way), I had to admit to myself (for the first time, really) that she is different. She is special. She is 'special needs.' Oh, don't you just hate labels? But I don't know any other words right now.

The realization slapped me in the face. Almost literally. It took the breath out of me. As I was pulling her off the other children, I was panicking inside. It broke my heart to watch them push her away and run from her. Why doesn't my child look like the others? Why doesn't she act like the others?

I cried, of course.

I cried to those sweet ladies. Anna cried. "Me do Puggles! Me do Puggles!" After a few minutes, I scooped her back up into my arms, gave her a big squeeze, and we headed right back to that Puggles room. When I started helping with the AWANA program, it was so I could be with Anna more. 'Different' or not, we were going to do Puggles together. (Plus, I knew more helpers were on the way, which always helps!)

Different. That word has so many connotations. God made everyone different, didn't He?

And God made Anna. Anna, whom I briefly took out of Puggles last night for giving everyone big knock-you-down bear hugs. Anna, who just wants to love people in her own way. My baby girl. The sweet girl that God gave me to raise; He made her exactly the way He wants her. And He will help me be the best mommy to her that I can be. He will help me be what she needs. He.

He must increase, but I must decrease.

As I've mentioned in a previous post, the doctors think Anna has a rare genetic disorder (not life-threatening, but certainly life-changing), and we're awaiting her test results to confirm or dismiss this diagnosis. She has so many of the characteristics for Gorlin Syndrome; I really don't know what to think if the test comes back negative.

I feel like I'm on a boat, and God is in that boat with me. I'm not sinking, I'm not suffering, but I'm just drifting in the sea. Waiting. I'm waiting with God. We've been waiting for the doctors to figure out what's different about Anna for almost her whole life. Then, after so many appointments and tests, we have a possible diagnosis.

I see an island in the sea.

The doctors think she has Gorlin. My family and I think she has Gorlin. We're now sailing towards that island. And now that I see this island, I really want the diagnosis to be correct. I just want to get on land and set-up my tent and get into a routine. I want a normalcy to return to my life. We've been staying inside out of the sun for over a month now (with Gorlin, sun is bad). I can deal with no-sun, but I just want to know.

But the fact is, I don't know. All I know is my sweet girl is beautiful and special to me and to her Creator.

(this was our last trip to our city's botanical garden in June, before her diagnosis)

I don't know what God has planned for our family, but He is already drawing us closer together and closer to Him. Everything has been challenged this year, and we've all had to find a new normal and adjust. We're learning to depend more and more on Him, which is hard, but it's also a blessing. After all, a calm sea doesn't make a strong sailor.

Where I am weak, He is strong.

Plans. I make lots of plans and lists. I can control my plans and my check-boxes. (Hey! Thanks to my Foundations Guide, I know what the memory work will be for all three cycles of CC! That's so cool to me!) But, my plans almost always change because God's plan is rarely ever my plan. I feel like I did when I was about to give birth to Anna, the 'nesting' period before she arrived. I'm trying to make as many school plans as possible before the test results come back in a few weeks. And really, I'm trying to keep my mind busy. I'm not an over-achiever who wants to be the first to post her weekly plans on the link-up. I'm just trying to make it another day. Trying to come to terms with my new normal, until it's time for the next new normal.

Well, I just had these words on my heart to share this morning. No fun new links or ideas to post about school, just some mama ramblings about what's going on with us. All the feelings are fresh, raw, and new; I'm still processing everything right now. If you think about it, please pray for our family during this time. I'm so thankful to God for the family and friends He has blessed me with, and also for the new friendships I've made through this little blog.

And while I don't know much right now, I know that God is good. All the time.