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Wednesday, August 22, 2012

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!
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!

Thursday, August 16, 2012

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 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.

Thursday, August 9, 2012

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! :)

Wednesday, August 8, 2012

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!

Sunday, August 5, 2012

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.

Saturday, August 4, 2012

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


Friday, August 3, 2012

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. 


Wednesday, August 1, 2012

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'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