More Great News!

Happy belated Christmas! There is much to report about Amelia's first Christmas as it's been a good two weeks since my last post. We were in Michigan for a lengthy stay over Christmas. I will be posting more in the days to come...but first...
Thought you might like to know...before we left for Michigan I received an e-mail from Samantha, Peyton's mommy. If you recall I posted a prayer request a few months ago for Peyton. He too was born a Collodion baby just a few months after Amelia was born. Though they reside in Iowa, we heard of his story and were put in touch with Peyton's parents through April, one of our fabulous NICU nurses. Just before Christmas, I got an e-mail from Samantha letting us know they had been to a dermatologist in Chicago who gave them much to be thankful for this holiday season! Peyton's skin is healing and looks just great. From what I understand, his membrane was also mild but like us, they had to wait until he was a little older to see what his skin would do. Though I don't know many of the details, his story sounds very similar to Amelia's and it sounds like he is just fine! Samantha was very excited and so relieved. I know just how she feels. God is soooo good. Thank you to those who have prayed for Peyton.
I don't really know the percentages as I chose not to focus on numbers (because what do they really matter) but I do know this condition is very rare which makes it interesting that our nurse happened to know 2 babies born with the Collodion membrane within months of each other. Again, although percentages don't really matter, I think it's important to mention that the percentage of Collodion babies who do not go on to have a life long condition is only 10%. If anything, this just reminds me that nothing is impossible with Him. It so amazing and gives me such hope for anyone who struggles with illness or disease or for that matter, any type of suffering. God does not work according to percentages and numbers. He works according to prayer, faith, hope and love...nothing is too big or too small to pray for and no matter what, it's worth it to believe.

Cindy Lou Who

Nice One...

Real nice bubble! She's practicing for when she can chew bubblegum.
Just a quick Amelia update. She's almost 19 weeks old. She keeps us constantly entertained. We even fight over who gets to hold her sometimes. She is reaching for everything and if she gets it, it goes straight to the mouth. Occasionally, she finds her feet pretty interesting to look at. She is really exploring language and has gone through several phases using different sounds. Right now she is practicing her screaming. She likes to see just how loud she can get. She LOVES to give kisses and she squeezes your face as hard as she can while planting a slobbery wet one right on your cheek, she even makes special cooing noises, it's the cutest. She loves music class with her dad, lately it's been Ford's Christmas Carols Hour to which she screams/squeals along...she thinks her daddy is the bees knees, that's right, I said the bees knees. To her, he is the funniest daddy in the whole world and who knows, he just might be. But of course, she still prefers mama for snuggling and sleepy time. She has had cereal every day for the past 3 days now and she's really digging it. The first time we tried it a few weeks ago, she didn't seem to care for it and it did a number on her digestive system, poor bugger. But we tried it again this week and she ate it like a big girl. She actually holds your hand and guides the spoon to her mouth with sheer excitement and anticipation for each bite. What a difference a month makes. She seems so much older and she is so very interested in the world around her and to her father's dismay, she loves the mall. :)
We are gearing up for another traveling adventure to MI in the next few days. Please pray for great weather on our drive and a happy and especially sleepy baby who loves being strapped in her car seat for 10 hours straight...
Wishing you all the happiest, healthiest, and safest of holidays!
love
Kim

Elf

For those of you who share Amelia's affinity for
Elf culture...

Amelia had her 4 month check up today! She is a healthy 16 lbs 2 oz which falls in the 95th percentile...no longer off the charts :0 ) She is 25 1/2 inches long (90th percentile) and her head is in the 92 percentile at 43 cm around. She had two shots today and took them like a champ, she hardly cried, she's getting so big. All is well and she is a very healthy 4 1/2 month old.
Happy to report a happy report! Have a good day today!
Kim

Peace

I started this blog on the 6th, but today is the 9th, I never got around to finishing the commentary. It's the Christmas season and we are running around like chickens! What to get this person, what to buy that person, we have to get organized for our next big trip to MI. Did you feed the cat and where is the cat? The house is a mess, we have to balance the checkbook, pay the bills, who's going to go to the grocery store this time? Christmas card? How bout a New Years card? For some reason this season feels extra busy and somewhat more stressful.

So, from now on, it's about the reason for the season...Amelia's picture says it best, and with a bit of drool...
Wishing you Peace this season and God's blessings.
Kim, Ford and Amelia

Big girl stuff...

Just wanted you to see a few big girl things I've been doing lately. Happy Sunday.
love
Amelia

What's up, Santa?

Well, we did it. We took Amelia to see Santa today. Check her out. The whole experience was straight out of a Christmas movie...A Christmas Story or Elf perhaps. The hilarity. Let me start by saying that clearly this is not the real Santa. If it was, he would not have had his cell phone, car keys, and jar of Carmex sitting on a faux present next to his "throne," (Elf fans, you know just what kind of throne I am referring to). He even had an air purifier blasting next to him, that's a new one. And certainly the real Santa would not have asked me how old she was, twice no less, or her name for that matter. The real Santa knows stuff like that.
So, we waited in line and watched kid after kid, dressed in their Christmas dresses and Christmas sweaters enter beyond the golden velvet rope to sit on Santa's lap. Some willingly, some a little apprehensive and of course, there were those who clung to their Dads, screaming to be rescued as he, all the while perspiring from the brow, gently tried to pry desperate little hands off of himself and into the arms of a big bearded stranger. :)
But our Amelia, obviously by the look on her face, was just humoring her parents on this one. She never even looked up at Santa. For all she knew, she was sitting in a big, cozy, fuzzy, red chair in the middle of a mall, staring back and forth from Dad to Mom to a camera lady who were all making fools of themselves jumping up and down, shaking jingle bells, yelling her name trying to make her smile. She remained quite serious throughout the whole thing, a little perplexed even, but never cried. The silliness of it all made me laugh and filled me up with that fuzzy nostalgic feeling you get when you watch your kid experience something for the first time. I also couldn't help but jump ahead a few years in my mind as I wondered which of the above mentioned kids she would be when she was old enough to actually be aware of what was happening...excited and confident, shy but intrigued or just plain terrified...we got our shot, paid our fee and went on our merry way with yet another surreal parenting moment under our belts.

Thankful

Happy belated Thanksgiving! I don't think I even need to mention what we are thankful for this year, but I do want to say I don't think I've ever been MORE thankful! I also want to say how thankful we are for each and every one of you! While we were home I kept hearing how many people read Amelia's blog, even still. Amazing!
It was truly wonderful to finally get to introduce Amelia to her family. It has been hard for me to be so far away from family and friends since Amelia's birth, but it is so awesome that you all have been able to get to know her through this blog. She is a blessed little baby to be loved by so many.
We traveled to Michigan on Wednesday. We debated about flying vs. driving, deciding that either way, it was going to be a long day. We opted for driving to avoid the dreaded holiday airport scene. But what is normally a 9-10 hour drive took us 13 hours with our new traveler in tow. She did so well up until hour 8 and then she made it quite clear that she no longer wanted to be confined in her car seat, and can you blame her? No, I never got her out of her seat while moving, hence the 13 hour trip. (I had flashbacks of her days in the NICU when she was in her little box and I could not pick her up when she cried. :( What an awful feeling. One I will not soon forget). So, we had to make many quick exits to various fast food parking lots or gas stations to free her! We even found ourselves in a Menard's parking lot at one point. ? Poor Ford drove the whole way so I could ride in the back with her. Around hour 11, we were all fried. I was out of tricks, I was actually at a loss and feeling so bad for Ford who was driving in a torrential down-pour, in the dark, while listening to his 4 month old baby scream for freedom. At one point, he actually pleaded with her, from the front seat while driving, to help us out and to go to sleep. She stopped, looked out the window, gave a few sucks on the pacifier and closed her eyes and went to sleep. We were so thankful. :)
We didn't really have much time to recover from the drive and had to jump right into the festivities on Thursday which was quite an overwhelming day for her too as we celebrated with both the Lotos and the Stornants. She had never seen the likes of so many people; all who had been waiting to squeeze and love her up. She also did not have regular naps, needless to say I spent most of my Thanksgiving tucked away in various bedrooms, feeding and consoling and attempting to sneak her in a nap here and there. I even missed dinner but I didn't care. I was happy and thankful none-the-less. I knew the whole experience was a memory in the making... "Remember Amelia's first Thanksgiving? She cried all day and wouldn't go to anyone but her mom."
Friday was a little easier for her as we celebrated yet another Thanksgiving with the Turrells and Saturday she finally seemed to just be getting the hang of it, just in time to travel again! We left Michigan on Saturday night in the hopes that she would sleep most of the trip. She did, thank goodness. Lesson learned, travel at night.
Overall the trip was a success but she is certainly happy to be home. It's truly unbelievable how fast the time is going and how much she's grown. Just the fact that she seems to recognize being home, her bed, her toys...Ford and I both commented on how she seems older now, that somehow this trip matured her a little.
Traveling with a baby isn't the easiest thing but I thought a lot about the fact that it didn't matter where we were, or even how long it took us to get there. As long as we were together she had everything she needed and she seemed thankful.

Thanksgiving Anticipation

This was Amelia's face when we told her how many
people she would be meeting this
Thanksgiving weekend...

Prayers for Casey

Good morning! I woke up early this morning, well, Amelia woke up early, and I decided to check my e-mail first thing. I received an e-mail from my good friend Molly Sly who has a prayer request for her good friend Casey. Casey is in his early 30's, married with two small kids, a 2 and a 4 year old and was just admitted to the hospital. It is possible that he may have lymphoma. They are all very scared and are asking for prayers. So, please, please add them to your prayer lists. We all know the power of prayer. (Just take a look at that photo for a quick reminder)!
God bless your day.
Kim

Has it really been a week since my last post? Wow, I'm slacking aren't I? Well, let's see...what has happened in a week? Well, for one thing, my little peanut is growing up. Today she let out a full blown belly laugh. I was so shocked and happy that I cried. So far it's been the one laugh followed by a squeaky inhale when she gets really excited, fun and certainly cute but not an official laugh. So today, while I was kissing and blowing raspberries on her tummy...it happened, giggle central. What could be better? I demonstrated again for Ford tonight while getting her ready for bed, she did it again. He couldn't believe it either. Watching her grow and change and witnessing her personality emerge is nothing short of incredible. After what we have been through already in her short little life, these important moments feel like the greatest gifts, and maybe I am just that much more grateful. They are almost like little surprises, you never know when they are going to come and when they do, it's like God wrapped up a little box and left it on your doorstep. And the best thing is the little boxes keep coming.
There's not a day that goes by that I don't thank God for her and for healing her. Sometimes when the discussion comes up, the whole skin thing, I want to cut the conversation short and not talk about it, not remember it, not relive it. But then I remember, what an important happening it was and is in our lives. It was by far the hugest test of faith that I have been through yet. Which leads me to this story:
I joined a Bible study with my friend Elizabeth when Amelia was just 5 weeks old. I have never done anything like this before but in light of what I was going through emotionally concerning Amelia and her health, well, it just felt right. Plus I thought it would be fun and informative and a great way to meet some nice women my age.
We are studying the book of Luke. Interesting in itself as I learned Luke was a physician. Also interesting as he describes in great detail Jesus' ministry and the miracles he performed while here on earth. Many of these I read over and over again while Amelia was in the hospital and after we brought her home as they brought me much needed peace and hope.
A few weeks ago, I was reading the commentary before beginning that week's lesson which focused on the 40 days Jesus spent in the desert. In the commentary, it mentioned how the number 40 was used over and over again in the Bible (Jesus in the desert, Noah and the flood, and several other examples) and how the number typically signifies a period of testing. I thought about Amelia and the past few months, how grueling it was to wait, how desperate I felt and how hard I prayed. Something inside me made me jump up and grab a calendar. I counted the number of days we had to wait from Amelia's first dermatologist appointment (when he told us he could not give us any indication of her condition until she turned 2 months and that we would just have to wait), to her 2 month appointment when we found out she was healed.
Guess how many days?
40.

Fancy

Things have been busy on Beechwood Ave, hence the delay in posting lately. We've had visitors! Yeah! Friends Kate and Nancy and cousin Anna drove down last weekend after closing up shop for the season on Mackinac. It was great fun and we were sad to see them go. But now Grandma and Grandpa Lotoszinski are here getting in some snuggle time with Amelia. :) She is warming up to them slowly but surely. I can't believe what a Mama's girl she is already. It's really evident watching her interact with others these last few weeks. I'm confident that Grandma and Grandpa won't give up and they'll be able to break her in before all the excitement Thanksgiving weekend! She's got a lot of new people to meet! Can't wait.
Check out the bonnet! How hilarious is that? It belonged to me when I was a babe, where did I go that was so fancy?

Great Pumpkin!

Happy (belated) Halloween!
Amelia's first Halloween! No, she didn't wear a costume, but she did wear the cute Boo outfit from Grandpa Hank and Grandma Claudia. She's a punkin. Plus, look how big she's getting! She's standing (almost). :)
On a different note, tomorrow is the big game between Michigan State and Michigan. I am getting calls from several desperate MSU fans asking if Amelia could please wear some MSU clothing and forgo the U of M onesie (which is getting a bit tight by the way). I'm not sure how to handle this as her dad is a U of M fan and would not like it at all if she wore a MSU outfit. But her mama is a MSU alum. Sadly, she doesn't even have a MSU outfit. What to do....
to be continued...
Sweet dreams sports fans.
Turrell Family

Prayers for Peyton

Recently, I received an e-mail from one of Amelia's NICU nurses regarding a friend of hers who two weeks ago delivered a baby boy named Peyton. Peyton was diagnosed as a Colloidion baby. (Some of you may have seen the comment posted by Peyton's grandma on the blog following Amelia's dermatologist appointment). I have exchanged e-mails with Peyton's mom and she has expressed how stressful it has been waiting but told me that Peyton is thriving, retaining fluids well and gaining weight. Wonderful!
With the Colloidion baby, there is this unique waiting period from when the initial membrane sloughs and the two month mark when all you can do is, well, wait. Wait and pray. As awful as it felt not knowing, for me there was also this overwhelming feeling of hope. Of course, Ford and I know exactly what these new parents are feeling and we understand all too well the journey they are facing. Please help me to help them make it a journey of hope more so than fear. Hope is so much better than fear! Please pray for them as you have prayed for us, specifically for peace, strength and of course healing! I have expressed over and over how much comfort it gave me, and still gives me to know how many people were (and are still) praying for Amelia. I know it would give this family the same comfort to know that you all are praying for their beautiful new baby boy as well.
Amelia is testament that healing happens and that His power is unlimited!
There's that word of the day again. Unlimited.
God bless Baby Peyton!
Love to you all.
Kim, Ford and Amelia

Pints and Half Pints

No, don't worry, this is not another blog about Little House, (although for those of you who share my affinity for Little House, it's no longer on TV Land, but it is on the Hallmark Channel) but rather about a Thursday night out with Dad. The picture shown is Amelia and Ford on their way out to 12th South Tap Room (just so you know...a smoke free neighborhood restaurant down the street from where we live) where Ford and some of our dad friends meet for Pints with their Half Pints in tow, or in a Bjorn. :) She loves Thursday nights with her Dad and it's a nice chance for the mamas to regroup for an hour or two. :) Everybody wins!
Amelia had her 10 week pediatrician visit today (she's actually 11 weeks and 3 days) and once more she was tipping the scales in the size department. Literally! She's is 14 lbs 14 oz, again off the curve of percentiles, she is in the 95th percentile for height at 24 1/2 inches long, and in the 85th percentile for head circumference at 41 cm. I asked her doc if he could predict how tall she might be, but apparently they can't guesstimate until they reach the age of 3. She is healthy from head to toe and it was so fun to be able to tell her pediatrician the good news about her skin! She had two shots today. Is there anything sadder than the look on their little faces when they are shocked by the pain of a needle stuck into their little legs? So stinkin' sad, it's amazing how as a parent you feel their pain down in your core, it's the craziest isn't it? Needless to say, she was exhausted and has been taking a long snuggly nap since we got home.
Here is an overview of what Amelia has been doing lately...she rolled over yesterday from her back to her tummy, she smiles socially all the time and coos and talks regularly, she loves listening to her dad play the guitar and kicks her feet and squeals in delight. However, she is a bit of a fraidy cat when it comes to things like loud noises, baths and hairdryers (see Big Lip Clip). Her eyes are still quite gray but look like they might be turning a bit brown, we'll have to wait an see. She has a nice round bald spot on the back of her head but her hair seems to be growing now on the top of her head especially. She loves to be naked on her changing table. She started drooling quite a bit although it's too early for teeth and she loves her mommy and daddy. She does not like it when Mom eats pesto.
So, happy to share with you a wonderful report of health and happiness for our Amelia.
Thanks for your prayers, love and support as always.
Love
Kim
Also, thank you for your prayers regarding our friend Tim's dad, Norval, who was diagnosed with Prostate cancer recently. Reports have been good thus far and I know they would appreciate your continued prayers.
The same for my cousin Claudia, thank you for the prayers. She is healing nicely tolerating her pain well too.
God is good!
Thanks again.

It's Saturday morning. Amelia is trying to take her morning nap. It's still a struggle, to say the least to get her to lay down for a nap. She enjoys the snuggling so much, she can't bear to be without it while she sleeps. So, the dilema continues. I solicit advice from friends and books. Everyone says something different. "it's okay to hold her while she sleeps because rest is most important, lay her down and let her cry it out, don't let her cry it out, 10 weeks is too young to let her cry, babies need to be soothed, you can't spoil a child under 6 months of age, let her cry for 5 minutues and then console her then 10 minutes and so on, don't let her sleep in your bed, yes, let her sleep in your bed she's only little once and she won't want to forever...be consistent!
What to do? Excuse me, I have to go console my screaming Amelia! :)
You know what else is interesting, why do the LOUDEST things happen when a baby is trying to sleep? The UPS man pounds on the door (usually with a present for Amelia!) :), the can of artichokes falls out the cupboard and crashes loudly onto the kitchen floor when you are quietly and finally trying to squeeze in a bowl of cereal for yourself, the CAT meows a few hundred times in that extra loud nails on the chalkboard sort of meow...excellent.
This is what baby memories are made of...and I'm loving it.
Onward!
Happy Day and blessings,
Kim

Big Lip Clip

Dad and Amelia playing a funny game...

Happy Fall!

Happy fall! Amelia took her first trip to the pumpkin patch yesterday out in Franklin, TN. She slept the whole time. :) We got her her first pumpkin, a small baby one. It was great to be out and about, enjoying a warm sunny Sunday afternoon. (It's still pretty warm here). I do miss the apple orchards of Michigan. Apple picking, warm cider and fresh pumpkin donuts...I can't wait to take her when she's older. There's something about fall that makes life feel a little less hectic. Things tend to slow down and there's a sense of calm and a feeling of settling in. That feeling is magnified around this house since our doctor's visit last week. Everything seems different. We can really relax and not think about the "what's next" as far as her skin is concerned. God has given us that gift, and along with that gift, all the other worries in life don't seem so big anymore. I intend to hold onto that peace that has been granted as I continue to pray for guidance as a new parent...here we go!
I am thankful for this blog to be able to share with you the journey we've been on the past few months. This blog has been a great tool in so many ways. It has also allowed us to reach so many to ask for prayers and healing. I am in awe of the power of prayer.
I want to extend to you a few prayer requests...one for my young cousin Claudia who just underwent back surgery. Please pray for her pain and for quick recovery and total healing in the years to come.
And also for our good friend Tim Netsch's dad, Norval, who was recently diagnosed with Prostate cancer. If you could add him to your prayer lists...please pray for peace for he and his family during this time and of course for his healing. Thank you!
Enjoy this fall, take time to get to a pumpkin patch or an apple orchard with someone you love!
We love you.
Kim, Ford, & Amelia

Auntie Michelle comes to visit!

Hi Everyone,
My Aunt Michelle came to visit me this week. We had lots of fun! We played and sang songs and went for walks and looked at books and laughed and laughed. We had a good week this week. More good times. I love visitors, wanna come over?
Nighty night.
i love you
Amelia

THIS is the day the Lord has made!!!

Praise God! Healing happens! God has blessed us and we are so very thankful. Our hearts are overflowing!! She's healed, just look at her!
Let me start by extending my warmest and most heartfelt thank you to EVERYONE who prays for Amelia. The incredible outpouring of love and support has been nothing short of amazing and wonderful. Thank you, thank you, thank you.
We went to Amelia's dermatologist appointment this morning. Dr. Mike Smith and two resident interns came in to see her. He took one look at her and said "Wow, she looks great." I showed him her tummy, back and neck. He said, "Yup, she's still peeling." He went on to say that at this point he can rule out any of the major types of Ichthyosis associated with the Colloidion membrane (Lamellars, CIE, X- linked, Nethertins, etc.). These types would have shown characteristics by now, on her legs, or red patchy skin, etc. She would have been getting worse over the course of these past few months, not better...and she just keeps getting better! He saw no reason to do a biopsy, just as Ford predicted. :) He told us that IF anything at this point, she could show signs of having Ichthyiosis Vulgaris between 6-12 months of age, this is usually late onset and can be associated with a Colloidion baby or not. But basically she looks so great that he couldn't even say that with any certainty. (This would basically mean some dry skin or a few patches of Atopic Dermatitis- eczema, very minor and very treatable). He said she's on the road to normal looking/acting skin. Music to our ears. He even said he does not need to see her again!
So, medically speaking, she falls into the small percentage of a transient peeling Colloidion baby with no underlying skin condition. This basically means she peeled again (in certain areas) after leaving the hospital and the skin underneath will be normal in the days to come. No one knows why some babies have a Colloidion membrane and nothing else. He could not even tell us if it is a genetic issue. (Ichthyosis is a genetic issue). He gave us the number of a geneticist at Vanderbilt if we should have any further questions, said, "she's pretty cool," shook our hands and said "nice to meet you." Wow, it was like a dream!
A huge weight has been lifted today. The Lord has blessed us and has blessed her with His gift of healing. He IS the Great Physician. There is no doubt in my mind that He has healed her. She is proof that healing happens, that all things work together for good for those who love Him, and that nothing is too big or too small for Him. I have also learned that this does not mean that He does not allow suffering, or that He keeps bad things from happening to good people, or that He will always answer our prayers on our timing. He has a plan for Amelia, He has all along, just as He has a plan for all of us. Through this I can say with certainty that He wants to bless us, and he wants us to trust Him through the worst of days and the best of days. Today was the best of days, and I am forever grateful.
Love to you all.
Kim, Ford and AMELIA

Friends

Hi Everyone.
Meet my friend Elsa Netsch. She lives across the street and she was born 12 days after me. Lots of you know her big sister, Ivey. They came over tonight for dinner and we got to play for a while. Look, we're holding hands. Good times.
I love you.
Amelia

Pre-appointment update...

I can't believe Amelia is almost 2 months old. It's been such fun watching her grow and watching her personality blossom and to think, there's so much more to come! Along with the time spent getting to know our little Amelia, the 2 month marker has also been one of anxiety for me. It means trip number two to see Dr. Mike Smith, pediatric dermatologist at Vanderbilt University Children's Hospital. Many things have been going through my mind leading up to this appointment. He told us at her 2 week visit, that if her skin looked normal he would not do a biopsy. So, I felt like we had this time limit of six weeks to watch her skin do what it needed to do to reveal normal baby skin head to toe. As anxious as I was for this, I have to remind myself that my timing is not always God's timing...but overall, we have been extremely encouraged by her progress, she just keeps looking better and better.
Along with some of the original membrane still left on her when we were discharged from the hospital, she kind of peeled again on certain areas of her trunk. It's almost completely gone and all that is really left to peel is her neck and the creases in her pelvis and a tiny bit on her tummy. I was hoping this would all be gone by her appointment date, but I can't complain since the skin underneath what has come off is the appropriate color and is very smooth. I think this is just taking the longest because they are hidden in her creases. Her skin on her face, shoulders, arms, hands, bottom, legs and feet still look beautiful and normal and have not changed in the past few months. Wonderful, this has been so reassuring for me. As you can imagine, I inspect her daily and I thank Him everyday. :)
Praise God! Our prayers are working.
Knowing how well she's doing, it's so hard that we have to wait to see what he says about her trunk and whether or not he wants to do a biopsy. From what we understand, the biopsy would involve a local anesthetic (a shot) and then a 3 mm diameter plug of skin would be removed and closed up with 1 stitch, leaving a small scar. So, if he does one, he'd probably take it from her butt, which again looks normal. Ford's opinion is that he will not biopsy her this time since there is nothing to really biopsy. That feels like answered prayers to me. :)
There are many facets to this condition, not really worth getting into unless there's a reason to but we recently learned that 1 in 250 people have Ichthyoisis (which basically means dry skin). This type is called Vulgaris and can be associated with the Colloidian membrane or not. The other types that the dermatologist mentioned are more rare as they are associated with the membrane. And of course there are the babies who have the membrane but no condition.
We continue to pray each and every day for her healing. She is looking so great and we thank you all for continuing to WAIT with us and most importantly for continuing to pray for her.
So, I am asking AGAIN....Please continue to pray for her complete HEALING from this condition and please pray for her appointment on Monday.
Thank you.
Love to you all.
Kim
Mark 11:24

Grandma and Grandpa T Visit Me!

Happy Sunday!
We had visitors this weekend! Grandma and Grandpa T came to meet Amelia and celebrate Ford's birthday. He is 31 and officially well into his 30's now. To celebrate, we went out to dinner. It was Amelia's first experience at a restaurant and definitely her first experience around that many people. She seemed amazed, startled and a bit frightened, I don't know if 8 week old babies feel those things, but those were her facial expressions as perceived by us, her nervous parents. Does she hate it here? Is she going to scream? Is she too cold? Should we just get our food to go and avoid any potential baby break downs? No, take a breath, relax, and remember that we are not the first people to ever bring a new baby to a restaurant. Dim lights, the hum of conversation and clanging silverware, lounge music coming from the bar...oh she fell asleep...ahhh. Success.
We had a great weekend with Grandma and Grandpa Turrell who witnessed first hand Amelia's aversion to laying on any flat surface alone during the day. She got worked up a few times, hard enough that her little eyes were able to form her first tears, they weren't substantial enough to fall down her cheeks, but they were there! A happy moment for us but sad for her. :)
She is talking more, she and her Dad have long conversations. When she is not wailing she sure does love to smile. :)
The picture of Amelia features her wearing her U of M onesie on game day again. She is officially the good luck charm for the Wolverines. Since she started wearing it on game day, victory for Michigan. If she keeps growing like she has been, I'm not sure the onesie will last the season...we'll make it work.
Please pray specifically for Amelia's skin on her neck. It's being quite stubborn since this area never sees the light of day...too many rolls! One week from tomorrow is her dermatologist appointment. We need lots of extra prayers this week. Thank you all for keeping her in your thoughts and daily prayers. We are so thankful for each and every one of you and pray for all of you as well.
"For nothing is impossible with God." Luke 1:37
love
Kim, Ford and Amelia

Kissable!

Happy Monday Everyone!
Amelia just wanted to say hello to everyone who keeps up with her sweet little life. She is doing really well. Growing up too fast already it seems (and out, check out her rolls, she's got wrist rolls now). She's 7 weeks already. She's very sturdy (that's as good a word as any I guess). She never really felt quite like an infant to me, she was born older I think, wise beyond her years (weeks maybe). She is the sweetest and we are having so much fun getting to know her. Ford and I laugh about how much we kiss her cheeks. You just can't help it; they are so totally kissable. We have been teaching her how to kiss back. She's really good at it. :) This past weekend we practiced putting her down for naps in her crib, this has not been her favorite thing, sleeping in her crib during the day, but it actually went really well. She did manage a few longish naps in her room once she finally settled down. We also went on a family outing on Sunday to get coffee and peruse the book store. She enjoyed herself immensely at both places, she's a lot like her Dad.
Her skin is doing fairly well, nothing really new to report. She has been really "sloughing" lately on her back, sides and abdomen. Her neck is actually starting to dry up and flake finally. Apparently, some babies can continue this process for quite a while, we've been told some babies peel a few times. We are just praying this skin continues to come off and the new skin underneath remains smooth and healthy. Her face, limbs, bottom, chest and shoulders remain baby soft and smooth. I thank God everyday for this.
It's very hard not to think about the future, that old fear and anxiety has it's way of creeping in sometimes, but each day gets a little easier and for that I am thankful. As we get to know her and her personality, the scariness seems to shrink smaller and smaller as Amelia, the beautiful happy baby and her big personality grows bigger and bigger. This has been a very real and very big lesson in living for each and every day and enjoying each moment. Trust me, it's easier said than done most days, but it's easy to look back and see how much time is wasted on worry. Time that could be spent experiencing a million other things...love and fun, books and music, walks and playing, laughing and kissing big soft cheeks.
We are grateful for the support system you have all been for us these past 7 weeks. I feel so blessed to know that so many people, all over the country really, are praying for her. We have gotten the most amazing e-mails and comments from people who have heard about Amelia and have reached out. It's incredible, God's grace.
Thank you a million times over.
We love you,
Kim

Big Girl!

Big day today! 6 week pediatrician appointment. She got 2 shots, one in each leg. So sad, she cried so hard. :( She weighed in at 12 lbs 13 0z and 23 1/4 inches long! She's is 90th percentile for height and 80th for head circumference. As far as weight, well, she's not even on the curve! She flew right off of it! She is growing like a WEED! The pediatrician said she is a healthy girl all in all. At six weeks, her eye sight is really developing and he talked about visually stimulating her as much as possible. She has really been engaging in eye contact and she smiles socially all the time now, but like Michelle said to me yesterday "she's been smiling her whole life," it's true really. It's the best when she wakes up happy and I go to get from her crib and she breaks out into a "hi mama, I'm so happy to see you" grin. What a way to start the day. :)
We also talked about sleeping habits. It's amazing how this little being can rule the day! She is not so much a fan of sleeping anywhere but on someone or in the Bjorn during the day. However, at night, she's actually cool with her crib. She usually sleeps 5-7 hour stretches at night, last night being one of them. Thank God for this because it was just she and I all day again since Ford worked and went to the Bob Dylan concert at the Ryman (for you Dylan fans out there...Ford used words like "monumental" and "best ever" and "amazing" to describe this concert experience, he said he could even understand the words :) and he recommends catching this tour if you can). Anyway, on the 8th try I was able to finally get her to stay asleep in her crib, wow, a long one.
It's Friday, and Ford is home today and has encouraged me to get out of the house for a while, so here I am blogging...hmmmm.
I will end with a little cuteness involving Amelia's 4 year old cousin Christopher who lives in Michigan. He loves her, he loves her sooo much, I can hardly stand the cuteness. He was here in Nashville when she was born, he got to see her briefly and held her only once and then didn't get to see her again since she was whisked off to the NICU where kids are not allowed to visit. Despite the circumstances, a strong bond formed and she has been on his mind ever since. He sends her mail weekly, usually Michelle doesn't even know what he has put into the envelope before he seals it up. He also sends her regular e-mails which he dictates to Michelle which she in turn types verbatim. In his e-mails he tells her of all the wonderful things they'll do together when he sees her again and how much he loves and misses her. "We will play guys and Play Station...and we will make a fort in the woods and I will protect you so you won't get hurt or anything."
He has not been too excited about going to school these days and after a rough morning on Wednesday, his teacher told him he could bring something from home to keep at school that he could look at any time to make him feel better. Guess what he chose? "I know just the thing, Mom..." Yes, it was a picture of Amelia. Today was show and tell and he was told he could bring in something starting with the letter "A." Guess what he wanted to bring? Yes, again, a picture of Amelia.
Buddies for life.
Love it.
God bless,
Kim, Ford and Amelia
p.s. It's official, I've gotten word, after the last blog involving Little House, that I have officially gone off the deep end...

Half Pint

Look at her little hat, can you stand it? It kind of reminded me of Half Pint's night cap...you know the one.
Remember the days when you'd get home from school, your Mom would be cooking dinner and you had just enough time to catch the latest episode of Little House on the Prairie? Anyone with me? Well, guess what? You can still do that! Every night at 5:00 pm on TV Land, you can catch a rerun of the wholesome family goodness that is Little House. Ford laughs at me, but I love to watch it (secretly I think he loves it too)! Maybe because it reminds me of being little, of a simpler time in my life. Or maybe it's because each show contains an important life lesson, there are many many references to faith and God, there was always a happy ending, and come on...Pa cries without fail in each and every episode. (You know you've cried at more than one episode too...) Call me crazy, but is there any show out there today that can compare? Though most of us get sucked in to at least one reality TV show or another, myself included, it's still sad to me that this has become the norm. Little House was just simple and it always left you feeling pleased, with a feeling of satisfaction, and a sense that everything was going to be alright.
Here I am, 10 pm at night writing a blog about Little House on the Prairie. Most of you probably think I've lost it! Probably so, but in an age of video games, computers, and reality television, it makes you wonder, where are we headed? My hope is full circle, maybe as a society we'll get back to basics eventually. If not in my life time, maybe in Amelia's. In the mean-time, I hope that she finds herself drawn to the simple and good things in life...and I pray that those things find her...and of course I pray for happy endings.
That's it. Good night.
sweet dreams...
love
Kim

Sunday

Sunday walks with my Dad make me smile...

Saturday...the possibilites.

Today is Saturday. Amelia was quite a sleeper last night! She fell asleep around 9:30 pm and when I woke up at 3:30 am, she was still asleep. I actually had to wake her to eat. Then she slept until 7:30 am. Nice work. Ford got up then too. "Are you getting up already?" I asked him. He replied, "It's Saturday, I love Saturdays, the possibilities are endless." He went on,"Saturdays are like taking a trip to Home Depot." He has a theory that men love to go to Home Depot, even when they don't need anything, because of the potential there. It's a vast and seemingly endless warehouse of potential, of things to dream up and build. Interesting theory, yes? Leave it to Ford to find the deep underlying meaning in a trip to Home Depot.
Possibilities and potential, if you think of them in the positive light they are two very nice words for the day I think.
(Especially considering Michigan plays today. Check out Amelia's onesie in the pictures, you can see she's hyped up for the game).
I have to admit, I cling to words like this these days, especially when a doctor speaks them to us. It's very easy to go the other way in your mind however, "it's possible that she has an underlying skin disorder" for example. And since we are in this waiting period, the thoughts tend to go back and forth from the positive and reassuring thoughts of healing to the scary anxiety ridden thoughts that she may have a condition. It's a loss of control, and feeling of helplessness.
So, we turn to prayer day after day. Trust is hard considering our own understanding takes us only so far. That is why we have faith. Where would we be without it? With faith the possibilities and potential are endless...
So, again, complete healing...and for all of those who ask me what I'd like you to pray for specifically...please pray for the areas of skin on her body that aren't quite "normal" looking: her back, sides, abdomen and neck. We are helping these areas along with regular soaks in the tub and lots of Aquaphor but it sure would be nice if these areas cleared up and stayed clear, especially before her next appointment. And that the rest of her stays clear and beautiful of course! Amen.
Love you all, happy Saturday.

Real nice...

Strollin'...

It actually got down into the 60's at night this week! Fall is coming! Needless to say the mornings and evenings are not as scorching as they were in August. So, yesterday we tried out our beautiful new stroller for the first time. Amelia loved every minute. She gazed about for a while until she fell asleep and Ford and I walked and talked as we cruised the neighborhood. A nice family outing. :)
The more I get to know her the more I realize, this kid likes to be on the move! Oh boy! In fact, she is going on a 2 hour nap at this very moment as I carry her around in the Bjorn. She fell asleep on our morning walk and has been sacked out ever since. I haven't given up on naps in the crib by any means but this is a happy alternative and allows me to get other things done. I read somewhere that somebody makes a crib that simulates being in a car going 55 mph. What?
Anyway, here are a few photos of her in her stroller, loving life.
love to you all,
Kim
Mark 11:22-25

Tuesday

Today is Tuesday! It's our long night/day together. I'm sure as weeks go on and she is sleeping more through the night that these days will get easier and easier. Today was 50/50. She cried 50% of the time and didn't cry the other 50%. :) It seemed she was having a growth spurt day because all she wanted to do was eat!! Every day is an adventure!
It's funny how when you're pregnant, everyone shares their pregnancy stories with you and offers their insight and advice. And when you bring your newborn home and try to deal with all of the changes...the stories, insight and advice keep coming. I imagine this continues as children grow as long as mothers, sisters, aunts, and friends have stories and knowledge and advice to pass on. It's a common bond we all share, whether we have children yet or not, and I find it incredibly comforting. Especially comforting to hear that you are not crazy and definitely comforting to know you are not alone. The first thing every woman says to me since her birth is "Kim, you're not crazy, you know that right?!" :) Funny thing is, no matter how many times I hear that, it's always a relief!
It's certainly exciting but overwhelming to deal with the newness of being a first time mom and dealing with the "normal" stuff associated with newborns. However, I never would've imagined I would have gotten the news on her first day of life that there was a genetic issue with her skin, that she would spend her first two weeks of life in the NICU and the future of her condition would remain unknown for some time. As scary, overwhelming, tiring and sad as the whole ordeal was in the hospital, we somehow had to kick it into gear to take care of her throughout her stay in the NICU. Now that she is home and out of immediate danger, we are like any other parents learning how to care for this little one...but there is something more. The waiting, the not knowing, the overwhelming desire to know that she is going to be fine. This "something more" is the hardest for me to accept and I admit that it hasn't been very easy for me. Also, I somehow felt, that because of our circumstances, that I was placed in another category of parenthood. I felt that my experience was different from most people I know and I was angry about it, still am I guess. I have actually felt grief. I grieved for normalcy and grieved for the expectations not met. Somehow the sense of normalcy was snatched away that very first day and I found myself asking why. Why?
Now I am faced with the next big question...what's next? With this question comes fear and anxiety.
I am told, however, that this questioning exists in the hearts and minds of every parent, even if their child doesn't have a genetic skin condition, or any other genetic disorder, or autism, or cancer... when we make the decision to become parents, and God blesses us with a pregnancy, we are still given no guarantees. I found that out on day one. Because we love our children so much, it is easy to forget sometimes that ultimately, they belong to Him.
But when we do make that decision to become parents, we also make the decision to be caregivers, to guide and teach, to wipe tears and share in laughter, to take a step back and ultimately let go...and we make the decision to love unconditionally, just as He loves us.

Ceiling Fans Rule

Hi Everyone!
Amelia here. I just wanted to say hello and tell you how much I love you all. I am so blessed that you all are praying for me. Thank you for caring so much for me.
Oh, my mom and I were just hanging out and she took some pictures of me smiling at my friend the ceiling fan. Hope you are all well and are "having some enjoy."
love
Amelia

Pic(s)

Ok, so I was reprimanded for not including a picture with my post...sorry...apparently things change once dad goes back to work. :) Here's a couple of pictures for your viewing pleasure...