Micah Update & Gifts Galore

Wow, has it already been almost 4 weeks since Micah's first of two back surgeries? It hardly seems like that long but it has definitely been a journey! We've been home for 2 weeks and are just now getting into a routine--whatever that means with 3 kids! I cannot even BEGIN to express enough gratitude for all the texts, calls, cards, gifts, meals, Facebook comments, visits, etc. that we have received during this time! It has been wonderful and overwhelming at the same time--but definitely appreciated!
 Micah's post-op appointment showed us a DRASTIC change in her spine. I am floored! I've seen pictures of my child's X-rays for more almost 11 years and I've always seen the curve, always seen the problem. However, now that there is an "after" comparison, so to speak, my mind is officially blown. Here are the "Before" X-rays, taken July 26, 2012, the day before Micah's anterior spinal fusion (first surgery, well, 6th if we're really keeping count, haha):

Side view X-Ray: This shows the kyphosis, another type of spinal curvature, you can see how far it humps up top and pushes in the lumbar region.

Back view X-Ray: See 57 degree curve in just that one noticeable spot, not to mention two other curves from scoliosis that aren't as clear. All of these curves were caused by her cancerous tumor as a baby.

Now, for the "After" shots. Mind, prepare to be blown:

Front view, post surgeries: See the spine now? Unbelievable! No wonder she gained 3.5 inches!

Side view, post surgeries: Is anybody else completely baffled by the size of those screws?!?!? See how much straighter the hump part is and how straight her back is as opposed to the before shots? Crazy.

So there you have it! I must admit, I got lightheaded when Dr.Warner at Campbell Clinic showed us these side by side. Like I said, I've seen her X-rays for years, Micah has gone to her orthopedic surgeon's office every few months her entire life almost, not to mention all the X-rays she also got every time we went to St.Jude for check-ups. These pictures show us on the inside what we can already see on the outside of Micah--a beautiful straight back! She looks AMAZING!

And lastly, I want to send every single person who has brought us anything or sent cards or gifts or meals or came by to visit but I KNOW I will leave someone out and plus I don't think there are enough thank you cards to thank everyone for their prayers and acts of kindness during all of this so far--so please know that I mean this from the bottom of my heart: THANK YOU!!! Thank you all! :)

This is actually not even all of the stuff Micah has received from our awesome friends and family and even strangers! This picture does NOT do justice to show the love we have received!

 Micah is up and moving around, she has even walked a half a mile a few times and a whole mile the other day with me and her siblings! She can now officially (as of this week) get up from a lying down position on her own, which is huge since she has needed me to do this for her until now. She isn't on pain meds every 4 hours anymore, and we give it to her as needed. She even got to go to church on Sunday, though we put her in a wheelchair (thanks Abneys!) to not only keep her from having to sit in a chair that may be uncomfortable, but also to keep her from getting tired out and sore and also to protect her from accidentally getting bumped or hugged too hard. (Great Commission folks sure are HUGGERS! lol) But she really enjoyed it!!
I also took the girls to Gracie Bleu on Friday night (for Haven's good behavior at school all week and because Micah was REALLY wanting to get out of the house:

And the 3 of us ventured out again on Saturday to watch The Odd Life of Timothy Green which was very good! So the GREAT news is, Micah is getting out and getting back to normal, slowly but surely! Now she really wants to go to Target...lol!
The gifts just keep on coming and we can't say thank you enough! As I am sitting here typing this blog post, yet another delivery came to the door:

How cute is this balloon bouquet from the prayer team at Premier Designs Jewelry in TX? I LOVE this company and our sweet prayer partner, Mike Glenn whom I know was responsible for sending this!

Micah's homebound teacher started coming this week and she has been working on her school work to stay caught up with her other 6th grade classmates and I know that she is getting to the point where she is going to be ready to go to school finally! It will be a few more weeks but we are getting closer! Thanks again for everyone's prayers and thoughts--God is SO good and His mercies are new every morning!

Micah's Surgeries- Mom concerns

No mom wants to see their child hurt! Every mother wants their children to be happy. Micah is my sweet happy girl and has such a fun personality everyone who meets her just loves her and loves to be around her! She is so special that way. And she is beautiful! I know that I'm her Mom and according to her "I'm SUPPOSED to say that" (insert pre-teen eye roll here) which, I'll admit, is exactly what I said to MY mom every time she told me I was beautiful! But its true, she is so beautiful and so precious! But (and I'm talking  mostly to the ladies here) do you remember as a pre-teen and a teenager ever looking in the mirror and NOT liking what you saw? Or perhaps every single time you looked in the mirror you didn't like what you saw and still don't like what you see today? It was different then, when we didn't post obnoxious duck-faced pictures on the social media for the sole purpose of everyone "liking" it or telling us to "stay beautiful, gorgeous" because it is cute and the "in" thing to do. Back then, we just had the mirror. And Satan whispering hateful lies in our ears about how imperfect we were. And how those same lies can sometimes come back to haunt us until we remind ourselves that "we are fearfully and wonderfully made" and our Father who created us created us with worth and value and BEAUTY inside and out! But yet we are in constant battle with what the media and society says is beautiful every day and I know that it is hard for many of us to truly feel wonderfully made when everything around us can tell us differently.
I say all that to say that the feelings of inadequacy and not being satisfied with our appearance is a normal--albeit inaccurate-- way to feel for most if not all women. Especially when we were transforming from girl to young lady. And this brings me to when Micah first viewed herself and her new scars in the mirror last week...
My heart broke as the realization sunk in of how much further and wider and longer these new scars are on her precious body. At almost 12, her desire is to be "normal" and I know we can all relate! She has had her scars (or as we have always called them, her "miracles") since she was one year old. And plenty of them! But she didn't care then, and even over the years as she became aware of them, it was never that bad. The first time she really even brought her largest scar up (the vertical one that was the length of her torso as a baby but a month ago was just from the lower back to between the shoulder blades) was in May when wearing her junior bridesmaids dress for my sister Melanie's wedding and she was just a little self-conscious about it. But all-in-all she really didn't seem overly concerned.
However, now that scar on her back stretches all the way up her back (well, she is bigger now so that makes sense) and the other one where her anterior fusion surgery incision is now curves around the side of her left rib cage but instead of ending there where it was barely visible from the front, it now curves down her belly a little ways. And of course a whole new chest tube scar right next to the old one that is 10 years old.
She just stood there and cried.
It was heart-breaking. I didn't tell her about the new way the incisions looked and maybe I should have before she saw them on her own. My sister Jessica pointed out to me later that this moment when she saw these marks on her body they were the WORST they will look. They will only get better. This is true! But combined with all the cuts and burns from the plastic sensors she wore during surgery, the medical tape (those clear-ish strips that will dry and fall off as her cuts heal) and lingering adhesive from all the sensory and motor pathways and monitors and IV tape (considering she had 12 IVs in 11 days, there was a LOT of tape from these, not to mention bruises left behind where the veins had busted or the IV had infiltrated, etc.) and all that other stuff they had to do to her, I'll admit it was probably a pretty upsetting thing for her to see.
Oh how I wish I could bear all these marks on my own body to spare her own little body all this trauma!!!
Yes, how I know there are worst things. Yes there could be so much more damage! She could have scars that are for more prominent and visible!  She could still HAVE the cancer that started all this mess, or worse, she could NOT have the scars to show she is a survivor! And we know what that would mean. And that's what I told her. She is a fighter! These marks are the battle scars of a survivor! We will continue to tell her that God chose her to walk this journey, because she can handle it! Because she is an inspiration to so many! Because her life will and IS making an impact for the Lord! Because she is BEAUTIFUL inside and out and these scars on her body make her even more-so because they are part of her, part of who she is, part of all she has accomplished through the grace of Jesus Christ.
But as a mom...it is heartbreaking. When my kids get a skinned knee or stitches or even just a little bruise, this mommy heart hurts because they hurt. Should an 11-year-old girl have to have so many horrible-looking scars on her body or have to have cancer as a toddler or have to have received so much chemotherapy that the side-effects will most-likely continue revealing themselves for years to come? Nope. She doesn't deserve it.
But I know of a man who they call Messiah who was beaten to a pulp and nailed through the hands and feet to a cross to suffer a criminal's death to pay for my sins and, my friends, He was innocent and undeserving. And if He requires that we bear the burden of cancer and surgeries and earthly pain to bear witness to His amazing mercy--then here we are, his servants...
Thank you, Lord, for your grace in our lives and for shining your light through Micah Grace! God heal her scars on her body nice and neat and heal her self-confidence so that she truly knows her value and worth don't come from a reflection in the mirror, but from YOU who sent your Son to die for her and the rest of us! Father, I also humbly ask that you reveal to Micah the beauty that is in her so that she doesn't focus on the scars but rather the story that they represent.

Micah's Surgeries Days 12-14

Days 12-14-
Its been "back to reality" this past several days now that Micah is at home! But wow, what an overwhelming amount of help and encouragement we have received just this week! My mother-in-law made dinner Monday night and my Aunt Polly, Oma and later Jessica (twice!!!) came by, my friend Katie brought dinner Tuesday night and most of my family came by and visited that night as well. We watched The Lorax, one of Micah's favorite movies and one she has been anxiously waiting to come out on DVD. Wednesday brought more visitors and my friend Lawanda came over and then my sweet girls Michelle and Kathy came over with a delicious supper! Angie brought over dinner tonight and I am so grateful for it all! We also have had several other friends come visit in between and I'll leave someone out if I start naming folks even more but a that risk, I have to name Natalie bearing a rose, Anna & Diane from the DAC brought a HUGE gift basket and Micah's friend Olivia and her mom Mary Helen also came by. Today my mom, Oma, Jessica and the boys all came by and who else? I know my Dad has also been by and stayed with Micah and Stone while I went and grabbed Haven. So many friends and I love it! Thank you guys for showering my sweet girl with gifts and us with food! Speaking of gifts...Uncle Jeffery and Aunt Kim (remember the ones who invited Micah to come visit and tour DC?) sent a pretty amazing "Get Well" gift that arrived Tuesday.....

Its an iPad!!!!!!!!!!!! I wish you could hear the screaming through this photo...

 Wow! I think maybe I feel a cavity coming on that needs filling...can that count as something that needs a Get Well iPad??? Haha. Micah was so dang excited, she has not put the thing down! Grandma and Papa paid for her to get a cool cover and I ordered her some accessories on Amazon. She had to immediately call Aunt Kim to thank them. What a special gift! Of course, she loves ALL the fun things she has received! We are so appreciative and these things have all helped make a tough situation go just a little bit smoother! :)

Micah's Surgeries Day 10 & 11

Day 10-
We had a quiet Sunday morning at the hospital especially since Micah didn't get up a bunch during the night now that her IV fluids are off. We tried to watch the church service for GCC via livestream but the thing that makes computers have video capabilities like livestream and youtube was messed up (I called the info number) so we were out of luck. We did have a few visitors on Sunday which is always fun: Macy and Lindsey came by and our friends the Peays came by. Hallie wanted to take a pic with Micah to put on her shirt she'll be wearing when she runs the St.Jude half marathon in December. 

 

My mother graciously agreed to come up and stay with Micah overnight at LeBonheur so I could go home and get Haven ready for her first day of school Monday! I got home just before bedtime and was so excited to see my youngest two kids. Stone snubbed me but Haven was excited! Stone came around later, when I was singing to him and rocking him before bedtime. :) He took a really long time to fall asleep after that, but he's also been gone for a week to Gary's parents so he has to get reacquainted with his own bed I guess. Micah and Nana put on a movie in the hospital room and Micah promptly fell asleep. So grateful for good help!

Day 11- 
Homecoming! We were originally told 2-3 weeks and Micah is getting to go home at day 11! How awesome is our God??? Micah is being discharged today! So excited but yet sad to leave the hospital at the same time. Its been a really good experience, all things considered. On my way back to the hospital, I stopped and was robbed by purchased 2 dozen Gigi's Cupcakes to show our appreciation to the LeBonheur nurses and other staff. It was the least we could do, she was treated like a little princess most of the time!

Margarita, Midnight Madness, Strawberries&Champagne, Cinnamon Roll, Pink Princess to name a few

 

 

 

After the removed Micah's last surviving IV (the one we protected like the Rock) we packed up (and packed up and packed up and packed up) everything and had Micah wheeled downstairs. My mom drove us and other than a few jarring turns, Micah made the trip just fine!

We picked up take out from Kyoto per Micah's request for her FAVORITE: sushi (mmm...) then picked up our prescriptions from the pharmacy and made it home. My in-laws were here with the kids, so grateful for their help!
I was able to take and pick up my little Haven from her first day of Kindergarten, she was SO excited and she loved it! I can't believe she has started school. Where has the time gone?

Haven Elizabeth

Mom: Haven, I change my mind. Don't you want to stay home with Mommy and not go to school? I can be your teacher instead.
Haven: I want to go to school! I have to learn all the REAL stuff. I mean, I already know all the rock star stuff, now I just need to learn the real stuff, Mom."

Oh...okay? But she did love it! I hope she loves it for a long time!

Micah's Surgeries Day 9

Day 9-
We've made it 9 days since we first checked in and Micah had her anterior spinal fusion surgery! It only 4 days post-op from the 2nd surgery: the posterior spinal fusion and already Micah is exceeding our expectations! She sat in her chair 3 times today and also walked the hall 3 times, even if she hated every second of it! She's been taking oral pain meds for over 24 hours now so that's been great and they stopped her IV fluids in the middle of the night so she hasn't had to get up a ton to use the bathroom. She's eating normal food now although she hasn't had a huge appetite. She is really wanting sushi, so I'm guessing that will bring her appetite back when I can get her some! Favorite food since she was 2! :)
A couple of Micah's school friends came to visit today with their sweet mama's, Emma and Hayley. Shawn Crowdus brought Madison down for another visit before they were discharged later, and Micah's new band director Mrs.Perkins came by and everyone brought treats! It was a fun day and Micah got a couple of naps in between visitors and her chair sitting and walking the halls. She's shuffling and turning her feet in a bit but because her back curves were so bad, they affected her gait and now she's having to adjust. Hopefully it will all straighten out as she gets stronger!
Micah is definitely straighter! And taller. She says she still feels crooked and everything hurts so bad, but we now have proof the surgery worked! She and my youngest sister Abby (5'1" tall) were about the same height. Micah was 62" tall the day before the surgery. I can't wait for the next measurement!

Mom helping Micah stand next to Abby to compare heights. Look at those cute faces!

 My parents came again and brought my sister Abby plus several treats and at Micah's request: ChikFilA! She was excited about that! Gary had asked them to come stay with Micah for the evening so he could take me out to dinner! We've so enjoyed our weekly date nights and since we missed last weekend he insisted on getting me out of the hospital. After some resistance, I agreed and we went to one of our fave places Movie and Pizza in HarborTown since we were just down the street. We hit Cafe Eclectic afterwards for coffee and dessert as usual and he finished the evening by giving me 2 charms for my Pandora. He also told me the reasons behind choosing each one and it completely made my day! So thankful this man has stood by my side through all of this, it makes things so much easier! 

Gary's "I hate social media because it means I have to pose for even more pictures than ever" face.

 

Micah's Surgeries Day 8

Day 8-
Micah is on the move!

Looking at downtown Memphis

 We had a restless night because Micah needed help getting up to go to her potty chair every 2 hours and she decided she didn't like the way the nurse helped her get up so she wanted MOM to do it! Guess there's something about Mommy's touch, although she has already told me that I would never make a good nurse, haha! I have to say I'd agree with her! But we are both hanging in there. :) The great news is that Micah is up and down, with much assistance, but nevertheless she is UP! She even walked to the end of the hall (about 25 feet) with the help of her physical therapist, Tea. 
Tea has been so patient with Micah because she does NOT like to get up or move because of the pain and also the nausea and dizziness that comes with it! She had to sit in her special chair for an hour, which she hated but had to do it 2 more times Friday and hopefully it will get better each time. She also walked again but this time she walked half of the floor and back. Its a struggle and Tea does most of the work, but Micah is moving and that's a huge step. If someone had told me she'd be on her feet just 3 days after her second back surgery I would have doubted it!
We had several visitors today including pastor Trevor and Ernie and Barney. Our friends/neighbors the Adams came and brought lots of goodies, Micah was thrilled to see them and has been asking for them so that was a special treat! The McAuliffe's from our church visited and brought Micah the coolest "surgeon" Build-A-Bear complete with an X-ray chart and sparkly pink boots! The coolest part was that each of them wrote a Bible verse relevant to Micah's situation that they felt encouraging and put.them.inside.the.bear. I just love that! So its a Scripture Build-A-Bear! Totally cool! Gary came after work and Wendy & Rachel brought a yummy Mexican spread (with a special best cousin bonus, THANKS Wendy!) followed by Corrie and Jenna with cupcakes and a balloon! The cupcakes are staring at me right now as I type this. Calling to me..."eat me....." I can only resist for so long. I'm eating like a pregnant person in this hospital!!! To all my DAC folks reading this, you guys are in for it when I come back to teaching, we have some work to do! Just kidding! (not really).
We also had 2 special visitors Friday: sweet Madison from church had an appendectomy here and walked down from her room on the 10th floor for a quick visit with her Mom (get well soon, Madison!) and the "pet therapy" folks came in with Salley the dog. SUCH a sweet dog and Micah enjoyed it!

Pet therapy with Salley

 
 

Micah's Surgeries Day 7

Day 7-
Thursday brought with it some baby steps in the right direction for Micah! Our physical therapist came back for more "torture" as Micah puts it but this time she not only made Micah sit up, she made her STAND UP. Yes, stand up just 2 days after her 2nd major back surgery! I can't believe it. With a LOT of support and very small slow baby steps, Tea helped Micah shuffle to her chair specifically designed for recovery from this type of surgery and made her sit in it for 30 minutes. Micah was NOT happy and was very uncomfortable but she did it! 
Tea came back later Thursday afternoon after Micah's catheter foley was removed and made her shuffle to her portable potty chair and sit. Then she had to sit in her special chair for a full hour! She hated every minute of it, but she is doing much better than expected! She is still using her pain pump with the continuous drip but is pressing the button less and less and by the end of the day, she was no longer having to push it every 10 minutes for that boost. Progress..
We had a few visitors: my Dad came up and my good friend Lawanda came and brought her girls to visit who brought some super fun stuff for Micah, including the waterless Tressemme shampoo several people have mentioned to me and we attempted to use it to clean Micah's hair (future reference: the hospital no-rinse shower cap thingies suck and you'd be better off pouring olive oil over your child's head to get the same results but it smells nice at least) and it helped a little but we finally just put one of her cute new bandanas from Cammy and Jasmine over her hair. Out of sight out of mind I hope until we can wash her hair properly without risking getting her incision sites wet or dirty.
My brother and Anna came by with Lucy Kate for a visit also and brought an adorable goodie basket and Angie Davis and Dalton brought lunch from McAlisters--yum! 
Micah is no longer hallucinating, though sometimes she wakes up from a dream still a little confused. It is SO much better than the other day, however and for this I am continually thankful!
My parents stayed with Micah while I snuck off for Micah's open house at the middle school and to file her homebound paperwork for the first 6-8 weeks of school she'll be missing (boo.) and then to the elementary school for Haven's open house. I can't believe she's starting kindergarten! I ran by the house for a minute to grab more clothes and sift through the mail. Micah got some sweet happies and cards in the mail and I was excited to bring them back to the hospital for her! Her friends and counselor from camp (whose sister had a similar surgery 2 weeks ago) wrote her. She smiled!
After my parents left (I was gone for a total of less than 3 hours but it felt like forever away from my sweet girl!) I was able to get in the bed with Micah (she has asked so many times but there were too many tubes!!) and we watched a little Olympics until she fell asleep. I remember getting into her hospital bed so many times at both LeBonheur and St.Jude when she was little and in treatment--and back then she was in a hospital bed CRIB so it was quite interesting-looking I'm sure! She has always loved to snuggle with her mama and I am so not a snuggler! But it made her happy then and it made her happy last night. So thankful the tubes and stuff going into her and wires monitoring her are becoming fewer and fewer every day. 

 

Micah's Surgeries Day 6

Day 6-
This day has NOT ended on a good note but up until this evening I had nothing but good to report! After a nice quiet morning of Micah resting and watching a movie, they moved us from the IMCU to the 9th floor! In fact, we are in the exact same room, just 3 floors up, so after I hung up Micah's happies she received from folks, it looked just like "home" haha. We got settled in and she rested some more. 

Toughest kid I know... 

Physical Therapy came in and not only got Micah to sit up, but after MUCH protesting from Micah, she actually got her to dangle her feet off the side of the bed and sit up for what seemed like forever! Micah did not like this at all and complained the entire time of pain and nausea and dizziness. I can't imagine how it must have felt to sit up for the first time since Friday early morning. I'm sure if she had actually eaten anything since last Thursday night, she maybe would have even thrown up. Poor kid! But she did as she was told and they said the first time sitting up is ALWAYS the hardest. So the worst is hopefully over as far as that goes! More of sitting up tomorrow!

Later this afternoon, Tina brought Micah's buddies Tanner and JT who came bearing not only great gifts, but my favorite: PF Chang's. Mmm... We had a good visit! Our super awesome electric guitarist at GCC, Paul also stopped by while he was here for a meeting and he is always good company as well. I was actually glad we had a low visitor count today. It was a rough day physically for Micah and it was nice to have a few quiet times today. Not that we don't love visitors! We do! Thanks to everyone who has texted, facebooked, called and visited, its been wonderful to feel so loved!
Micah got a PCA pain pump today where she gets to monitor her own pain. You can see the black button thing in the picture above. It has a constant drip of morphine and then every 10 minutes she is able to get another little "hit" if she needs it. It can't give her too much but it lets the nurses know how she is doing pain-wise, based on the number of times and the frequency in which she presses her button. I think she's been pressing it a LOT. 
This evening after Gary came with dinner (yum!) we started having IV trouble. They'd already pulled 1 of the really big IVs they gave her in surgery yesterday and then after the right arm (AGAIN!) infiltrated causing her elbow to get gigantic, we were down to one IV. And then, it too was gone. I made the call to step in as a parent at that point and put my foot down: no more TPN and lipids. The nutrients she was getting were good but the way almost every one of the TPN IV's was blowing after a while led me to believe it was NOT a good idea to give her any more. I've been doing my best ever since to keep giving her the clear liquid protein supplement so that she will at least have something. After both arms were unavailable, we started pushing for a PICC line but finally after the PICC nurse couldn't get an IV to stay strong (2 of the 3 she did was using an ultrasound and Micah's veins just kept blowing), the ER doctor came up and tried with an ultrasound and it almost immediately blew, the other doctor on call grabbed anesthesia coming out of the OR and asked them to come try. They were checking her feet for veins but he ended up finding a spot in her left arm and getting a good IV. It is now taped up, braced down and in an immobilizer as well just to keep it safe! They plugged her PCA back up and she is back in business with her button! WHEW!!!!! The fear was that the Valium and Zofran and Morphine in her system were going to eventually wear off leaving her in pain crisis in the middle of the night. Hopefully we are in the clear. He said this IV should last for several days...here's hoping!
We are continuing to log roll Micah so that her body doesn't lay in one spot too long, which she hates but she goes with it. 
Settling down for the night myself, tomorrow is a new day and will be better! "For this is the day that the Lord has made, I will rejoice and be glad in it!" Psalm 118.24

Micah's Surgeries Day 4 & 5

Day 4: 
What a busy couple of days! Monday was a tough day off and on between Micah waking up hallucinating, trying to rest and visitors, etc. She was becoming more and more uncomfortable as the day went on and I believe much of the stress was mounting the closer we got to surgery day #2. The fact she couldn't really rest and didn't get much sleep the night before only added to her disorientation and discomfort, I think. Despite it all, she has handled it so well!
My sisters Jessica and Abby came with my nephews and brought yummy lunch and snacks and were a great distraction for a while! Micah was very happy to see her aunt Abby!

Many other friends came by for a visit Monday as well: My in-laws pastor from Scotts Hill made the trip in to pray for Micah, my cousin Maggie brought Elijah and my Aunt Polly and my sweet Oma who made sure to tell Micah several times to rest rest rest! Maggie also brought Get Well notes from she and Elijah along with flowers and a bag of treats! My close friend Lawanda came by again, this time with quite the surprise for me:

Oh yes folks, that there in that paper sack is.....GARRETTS popcorn!!! My FAVORITE ever since Lawanda introduced it to me when she brought me some from Chicago. She asked her cousin to bring some for me when she came back from Chicago this weekend just so she could surprise me! So.stinkin.delicious. I can make myself sick off this stuff. And well, I have. The Edible Arrangement is from my sweet friends Leigh and Mrs.Sally. Yum! Don & Phyllis McKenzie came by for a visit along with Gary's buddy Al and my Dad.
Angie Davis brought Dalton and Hailey Ellis by with the most awesome gift from all the elementary kids at Great Commission Church:

 Absolutely awesome! We hung it up so Micah could see it from her bed! She loved it!
Gary came by for the evening and agreed to stay the night again with me up here. He also brought me dinner AND a special thoughtful treat to brighten my day:

 GiGi's cupcakes! So thoughtful!

Micah's evening wasn't so awesome, and it was the first time she got truly agitated and upset. I can't imagine what her little body must be going through and she really hasn't been in her right mind. Its been so frightening to watch and I'm glad it has decreased a little. Praying for rest...

I feel like I'm leaving something out or not mentioning something someone has brought us but know that all of it has been appreciated! I'm just not functioning on all 4-cylinders! And I also don't even know what that means...

Day 5: Surgery #2
Up early!!  Preparation for Micah's 2nd surgery started so early today! She was so uncomfortable and very upset all morning but tried to make the most of it! The epidural turned off in the middle of the night, so the effects were beginning to wear off and though she still had some morphine in her, her anxiety was mounting. She would become upset and anxious anytime someone began messing with her arms for fear of getting yet ANOTHER shot or IV and I don't blame her! They finally pulled the 5th IV this morning as well because her arm was starting to swell on the left side this time. Poor weak little veins! But this time they promised not to put another one in until she was asleep.
To help with this process, I read her some of the notes people have been leaving her when they come visit. What a testimony to Micah of how much people love her and what a great testimony to the nurse working with the IV of how God is showing His love to Micah through our family and friends. I pray it impacted her life as well in some way.
We made it down to the pre-op area and poor Micah was just so over it. They gave her the Versed to relax her. We saw sweet Paige who was on duty in the ICU the night that Micah was admitted for the first time way back in October of 2001 and has maintained a connection with us over the years. She brought Micah a fun gift too! :) Micah wanted me to sing to her so I did a little while we waited and it calmed her down. Well, that and the Versed. They prepped her, talked to us, and wheeled my baby off!
They kept us posted all day and she did GREAT in the surgery! It took less time than the first surgery but was a much bigger operation they said. They put in 20 screws along with the rods and sewed her back up. They took the chest tube out, re-did the epidural and foley and gave her bigger stronger IVs that will hopefully last...Here's hoping.

Here is our little fighter before they wheeled her down to pre-op!

While she was out, Chris Bishop brought us lunch, my parents came by, Anna brought sweet Lucy Kate to see us (with a treat for ME and bread for us to snack on!) and Mandy with a bag full of goodies (including duck tape which will thrill Micah to add to her duck tape collection!!!! haha). 

When Micah was finally back upstairs, she was way more awake than anyone expected but eventually settled down and has been sleeping most of the evening. Gary and I were able to go downstairs to eat, thanks to Mom for sitting with Micah and then we were able to just relax and watch a movie while Micah slept on. I guess I am bracing myself for the harder days to come. Lord give me strength and patience and energy to help Micah recover! She is my little hero! I hope she hears me when I keep telling her this and I hope she remembers..

Oh one more cool thing, just a testimony of how giving Micah is! She had her soft blanket on her because she was so cold when she came up (they have an ice vest on her, cooling her torso to prevent high fevers from the surgery) but tonight when the nurses were checking her back, she asked them to give the blanket to me because I was cold. I mean, really?? Love this kid.

Micah's Surgeries Day 3

My heart hurts to see my child in pain. I've wished 100 times in the past 3 days that I could take Micah's place during this whole ordeal but God knows I wouldn't be half as strong as she is if I were! Going into these back surgeries, I thought that it wouldn't be nearly as hard as watching her fight for her life against that horrible cancer and I was right--its not nearly as hard. But it is far from easy. She knows what's going on now. She can tell us where it hurts and how it feels and what she needs--none of which she could tell us when she was in treatment 10-11 years ago, but it doesn't lesson the helplessness that I feel as a parent. I cry when I have to take my 3 kids to get their immunizations at the pediatricians office and wish I could erase the memory of their betrayed expression when you're the one holding them down for it, just like most other parents. I hate when my kids just have a 24 hour bug or fall and hurt themselves the same as any Mom. These bigger things don't lessen those smaller things! But watching Micah go through this, only a few days in has proven way more difficult than I could have imagined. I wish I could protect her from all this pain and everything that goes with it. I pray that God will strengthen me as he strengthens her little body. She is so amazing and so strong.

Sunday we woke up refreshed because of a great nurse who kept everyone out of our room all night and when he came in, he was quiet like a ninja and never made a sound so we could sleep. We both slept until the lab nurse came in at 7 (nurse Ed kept her away when she came at 5 am) to draw more blood. This would prove to be a HUGE blessing later!)
The morning was quiet and relaxing and we switched between watching movies on TV and the Olympics. My friends from high school Keith and Tracy came with lunch and Panera Bread Company always brightens a day! They also brought Micah a bag full of awesome goodies for later, which she loved. Can you tell Keith and Tracy may know a thing or two about what a tween girl is into? Haha:

The nurses and I gave Micah a sponge bath and changed her bedding which was quite the intense ordeal for Micah, but she admitted it did make her feel better to be clean. We can't wash her hair yet to get all the crusty glue from the nerve pathway monitors out because they'll just put more in for surgery #2, but her Nana braided her hair so at least her hair is out of the way and looks cute. Very important detail, you know.
Gary and the kids came up in the early evening and brought Papaw and Grandma with them. Micah was glad to see her grandparents, and I was glad to see my baby boy on his 2nd birthday. :)

Nana and Grandy came up a little while later after the Barkers left with Haven and Stone (thank God for their willingness to keep the kids for us so we can focus on Micah this week!!!) and brought dinner. I didn't have much of an appetite unfortunately because Micah had begun having some disorientation around 5 or 6 pm and it seemed to get progressively worse. By 9 pm, Micah was having frequent hallucinations and unable to get even a few minutes rest. The medical staff speculates that it is the epidural meds or perhaps a combination of them plus the nerve pain medicine and morphine. She also has gone through 4 IVs since Friday and has a pretty severe IV infiltration on her right arm. Her arm got so big that her hospital band has left marks and she had no crease in her elbow and couldn't even bend her arm. They took both IVs out of that arm and medicine was just oozing out of the IV site in the crease of her elbow. It had backed up so much that her entire right shoulder was doubled in size and has swollen her neck as well. She couldn't feel her arm and then had to get 5 shots of medicine in her arm near the IV site as a preventative measure for tissue damage. So sad about this problem that could have been prevented had someone noticed it sooner, however it was a pretty quick drip so it happened pretty quickly. Her arm is propped up on pillows to help it absorb into her body, but its a slow process.
The hallucinations continued on through the night and neither of us got very much sleep. She would close her eyes for a minute to a minute and a half and then wake up upset or confused and disoriented. It wasn't anything scary or creepy thank goodness, but normal Micah concerns and conversations. Many of which I know will be funny later because they were just so "Micah" but none of which were very entertaining last night. For the first time I felt truly helpless because no one could give her anything, even just to help her sleep until it ran its course. She finally fell asleep after midnight for about half an hour and did that off and on between hallucinations until after 3:30 am. She then slept well til 5 am to 6 am and then the doctors/residents/nurse practicioners/lab nurses all began their rotations so she slept off and on til after 8 during all that.

All in all, Sunday turned out to be the hardest day yet. But she is still such a trooper and I'm so proud of my girl. If anyone can make it through all this with flying colors and a smile, its Micah.

Micah's Surgeries Day 1 & 2

Day 1: We arrived at LeBonheur Children's Hospital Friday at 5:30 am. Everything went smoothly and we got to talk to two of the surgeons (team of 3: general surgeon, neurosurgeon and orthopaedic surgeon) before the surgery. Micah was in high spirits at this point and looking forward to get the laughing gas in a special flavor she chose herself: orange.

Micah did fabulous as they prepared her to go back and once the Versed kicked in, she was one cool cucumber

Micah & Mom

 (You can read more about what brought us to this point here.) They took Micah back after her dad and I loved on her and we watched them wheel us away. Gary and I found a peaceful empty waiting room on the floor of the IMCU and waited for a couple of hours until my Dad joined us and kept us company. My dear sweet friend Lawanda also stopped by with balloons for Micah (They are so cute! Security actually took several of them away, did you know you can't have latex balloons in a children's hospital? Who knew?) and our friend Trevor came, too. Friends made the day go by faster! But not fast enough...

The surgery ended up lasting a VERY long time because the incision had to be so much wider and deeper. Total time back was 9.5 hours and a big percentage of that was cutting and stitching. They also ran into a roadblock: Micah's left lung has been stuck to her chest wall since one of her surgeries 10 years ago so they had to carefully "unstick it" so they could get to where they needed to go. The incision was mostly in her existing incision site (surgery #4 in 2002) but the new one reached back further and came forward a good bit more and now stretches down her belly past her sternum. :( This was unexpected and we haven't told Micah about how big the new scar will be. :( They were able to release the spine and put the cadaver bone in for it to begin bone grafting and creating a stronger base (bone fusion). All-in-all the surgery went as expected, albeit long.

When we finally got to see her, she was out of it, but already in pain. We are in a very nice room in the IMCU and I was able to unpack and get settled after Gary and my dad left and Micah rested. My sister Jessica and her husband and little Lincoln stopped by and brought me dinner, which I very much needed and appreciated! Lunch seemed like forever ago. A friend from church, Barney stopped by for a second to encourage us. After they left I was able to relax a little. I even got to watch almost the whole opening ceremony of the Olympics for the first time ever!

The night was LONG and very restless for both of us. The nurses kept coming in to check vitals since there are so many risks post-op and there were others who had to come in multiple times every couple of hours to do finger pricks to get vials of blood to test. Then there was the X-ray machine a guy rolled in at 4 am and slid a X-ray film board under the sheet under Micah and she did NOT like that at all. Ouch.

Luckily, this first incision starts on Micah's left side just at the edge of her side where it meets her back and wraps around the front. This allows her to rest on her back, though they have to keep "log rolling" her which is not fun. She also has a chest tube below that that is draining fluids from around the surgery site. Oxygen tubes and monitors are still on, both wrist IVs are being used and she has an epidural pump in her back. She is also on antibiotics, Zofran and Prevacid, glucose fluids and morphine, which is a great great thing.

Day 2: We woke up to a visit from Dr.Warner, her orthopedic surgeon from Campbell Clinic and 2 of his residents. I joked "Wow what a wake up call, 3 men in our room! haha!" but they didn't seem amused by my super hilarious humor. Probably because I looked like a hot mess. Anyway, he checked on her and seemed really pleased. We had a calm quiet morning and Micah continued to rest while I watched more Olympics and worked on a tribute for a friend's birthday. My parents came to visit and my mom brought me some awesome homemade spinach and cheese quesadillas. She is the BEST! Dad prayed for Micah again.
Shortly after they left, my brother Dr.Rucker and Anna came for a while and kept us company. After they left, Trevor and his mom Lynn came by and soon after my hubby brought his hot self and our other kiddos. Michael and my sister Melanie came then too and things got a little crazy for a while! I was grateful for the company though and to see my babies for a little while. Wendy came after that and brought me a bag full of snacks that proved SUPER helpful in the following hours. Thank you!

The afternoon has been harder for Micah. They've had to continue the log rolling and she hates it. She has lots of pain primarily in her incision site, where the chest tube is coming out and her wrists where the IV meds are flowing. Her lips are covered with sores on the inside where her braces rubbed her raw during the surgery and she has drainage in her throat from laying on her back. There is glue residue in her hair from the sensors they used all over her to monitor her sensory and motor pathways during the surgery. She has TPN (liquid nutrition) in one IV and glucose in the other. The epidural is still working and she is still receiving oxygen through a tube in her nose. She is swollen and puffy from fluids but everything is normal for this type of recovery. She's like her mama though and does NOT like to feel pain.

This whole experience has of course flashed me back over a decade ago when Micah was first diagnosed. She was so small at just before her first birthday. She couldn't communicate with me then and tell me where it hurt. I couldn't nurse her because she couldn't have food but she didn't understand. She had to have been in so much pain in so many ways and yet I was helpless to ease it. This kid is such a trooper. Such a fighter. She is such an inspiration to me and I know to so many others! From her cancer diagnosis almost 11 years ago to now, she has been a joy and a light in my life. I pray the Lord eases her pain and strengthens her as she pushes through yet another ordeal that most of us will never have to face. This pic was taken almost exactly a year after her diagnosis. She has had 5 surgeries, chemotherapies and so much more prior to the time this pic was taken and yet look at that sweet face! This was September of 2002. My Micah:

Tomorrow will be better. We have hope.

This could be a million times worse and for God's mercy and grace I am so thankful!

Dining Room Table & Chairs Make-Over

Black is Back--Dining Room Chairs & Table Make Over!

When our friends James & Amy Folkerts asked me if I knew anyone who needed a free dining room set, my first response was "Oh yes I'm sure I can think of somebody!" because anytime anyone offers me anything for cheap or well, FREE as in this case, I absolutely cannot turn it down! (Insert predictions for seeing me on "Hoarders: Buried Alive" one day...)
I knew my sister Melanie and her new husband Michael needed something so they made arrangements to get it to their new house and POOF instant eating area! Well...not exactly...because THIS is what they received:

Now, I have no idea what causes a dining room set to end up looking this way, but I DO know that the Fabulous Folkerts (as I like to call them now) have 4 small children AND pets and they had had this set a really long time. So there you go. The mission: to make it look like new!

I invested in quite a few cans of Valspar black satin spray paint (my only complaint is their new ergo-dynamic spray nozzles: easier on the fingers, yes, but I can't attach my handy-dandy sprayer attachment to them. Oh well. My fingers are getting stronger with every spray paint project...) and Melanie and I picked out the PERFECT fabric in a gray chevron print. I think we ended up using approx. 9 cans of spray paint on the entire project. At approx $6/can, it was still better than investing the time AND money into canned paint.
The Chevron fabric at Premier Fabrics in Memphis, TN was $10/yard and we needed about 3.5 yards. Happy birthday to Melanie. :)

This is me using the power drill to un-attach the seat bottoms. I feel extremely powerful when using a power drill. Big props to my husband for having a cordless one and big props to Michael Caffee for having a corded one that I ended up having to use when my cordless one died. Yay, manly tools. :)
I wish we had gotten a pic of me spray painting the chairs and table outside (two separate days) because it was HOT and VERY meticulous. We are talking squats, planks, and yoga positions trying to get all up in every crack and crevice!
I must say that the whole thing turned out awesome and I really enjoyed working on this with Melanie! She was available to help play with my kids to distract them while I worked, she cleaned up the dining room several times so we could move things around AND she cleaned the furniture after it got dusty outside drying. Plus she and Michael polyurethaned the table so it wouldn't scratch and could be eaten on.

Close-up on the chairs. I absolutely love the fabric!!!!

 At Melanie's request, I did NOT distress or age this dining room set like I would have if it were for myself. Mel's style is a little more modern and clean-cut whereas mine is more vintage funky fun so we compromised on the fabric (Thank you Melanie, I am so happy you agreed to it!) but I agreed to not distress the edges. I LOVE it!

 The entire project cost us less than $100! SWEET! Thanks Fabulous Folkerts! :)

Micah's 6th surgery--age 11

Micah was diagnosed with cancer at 11 months old: Nueroblastoma, stage IV and was treated with chemotherapy and had several surgeries--the final one removing 98% of her tumor and leaving the rest embedded in her spinal column, too dangerous to operate on. The cure rate of this particular cancer in children has a 57% cure rate (thanks to research hospitals like St.Jude) and Micah was among that 57% who kicked her cancer's booty and survived! *You can read more of her cancer story at her caringbridge site here or sign her guest book on her new current caringbridge site here *

However, Micah's particular cancer also has a 53% relapse rate, which means that over the last 10 years, and for the rest of Micah's life, there is a chance that her cancer could come back. For now...it has NOT.

WOO HOO! Jeremiah 33:3 says "Call to me and I will answer you and tell you great and unsearchable things you do not know." What an awesome piece of encouragement from our Lord, the ultimate Healer and Comforter!

So the good news is that Micah's cancer is not back. And I was reminded of just how thankful we should be of this today by my wise brother (a doctor, in case you didn't know...) who said that the important thing here is that Micah's cancer is NOT back, its NOT relapsed and that the upcoming surgery and all that goes along with it is just residual. Yes! We are so thankful! I pray that I will never take God's mercy for granted where my daughter's life and health are concerned!

Now here is the latest: 

We went to the neurosurgeon today (one of the surgeons who performed Micah's 4th and 5th surgeries when she was 18 months old) and Micah will have to have surgery this summer. She will be getting rods put in for her severe kyphosis (a curvature of the spine, and in Micah's case a curvature originally caused by her tumor) in July or August of this year but she will ALSO be getting cadaver bones (ew!) implanted in the base of her spine in order to brace and support her spine so that the rods are more effective. She will have one surgery to do the bone fusion, etc. and then 4-5 days later after her body adjusts to that they will do the rod surgery. She will be an inpatient for approx 2+ weeks if all goes ideally. 

Then she will not be able to be mobile for approximately a year: no running, no stooping over, no basketball, no tennis, no lifting, no gym activities, nothing. Just walking and rolling her backpack if necessary. Small price to pay? Sure. And like my brother reminded me today, Micah's 11--this would be WAY harder if we had to limit her at, say, Haven's age of 4! Can you imagine???

So we go back to Micah's orthopedic surgeon on Monday (the one who originally ordered all the CT and MRI scans, and who will also be working with the neurosurgeons this summer on Micah) where we will hopefully set a date for the first surgery. OH and they are also hoping to go in Micah's previous incision sites so this could mean no new scars (or as we call them "miracles") for Micah Grace. This is a small, but huge thing for us!

I don't think I'm leaving anything out, but feel free to leave comments here and on Micah's caringbridge site so that she can read them! Micah is acting so fine with all of this, that it makes me wonder if she fully understands what's to be expected. However, those of you who know her know this: Micah is a walking miracle and one of the strongest kids (and people!) that I know and she will handle this beautifully like she has so many other obstacles in her 11 years. I am so thankful and proud to be her mom!

Wall Candy Frame Giveaway!

I love pictures! And I really love fun cute frames to put those pictures in! Remember how frames used to be plain, slim, flimsy things that basically just held a picture behind some glass? *shudder* Well aren't we glad THOSE days are over! Because now frames are almost as decorative as the pictures that go in them (okay, not really because I know some REALLY beautiful people...) but still, way better than they used to be!
So....in light of some of the most beautiful and creative frames I've ever seen, I'm doing a GIVEAWAY again! Yay! Beth with Wall Candy Frames has graciously agreed to give away one of her awesome frames!!

How adorable is this??? (holds a 5x7 pic, retails for $65 and also I know a REALLY good photographer who would love to help you fill it: Peacock Photography.)
Want it? Me too! All you have to do is subscribe to my blog (see that little window to the left where you enter your email address and click "subscribe"? Yeah, pretty tricky, I know.) AND go to Beth's Facebook page: Wall Candy Frames and simply leave a comment under the frame you see pictured above. Then just come back here, leave a comment telling me you did both! Easy-peasey! Already a subscriber? Don't worry, my friend, you are still included! Just let me know you already subscribe in your comment on this post.
**Extra chance to win: SHARE my blog link on your facebook wall and leave a comment telling me you shared it (in the comment section below, which means you will then have TWO comments, therefore two chances to win) and boom, you've increased your odds!**
Thanks again to the fabulous Beth with Wall Candy Frames for being so generous to my faithful readers and thanks to YOU, my faithful readers! (This is the part where you roll your eyes and go, 'dang, Sarah not only talks too much but she is totally shameless in trying to get people to read her blog'...um....well, YEAH I am.) Drawing will be Sunday!

*UPDATE: We have a winner!! Jenna Long Parker has won the FABULOUS Wall Candy frame! Yay! Congrats Jenna! ps. Here is the generator I use and the photo of the screen shot that chose Jenna's number in the comment section. And yes, I only did it once, you'll have to just take my word for it! :) Congrats Jenna!