Thank you all for the notes to Craig and I that you sent over the last month, I know Craig has been touched by the uplifting words. We had a bustling busy but very Merry Christmas and Happy New Year and I hope all of you did as well.

Here is a picture of little Sophie sitting and clapping as she watched the train go round the tree, it was the first time watching this year and she was delighted. Then she took it a step further and would become like Godzilla (and for those of you who have spent any time with her she certainly makes the right sound effects) and every time Craig would run it she would knock the train off the tracks or just pick up a section of track, it was as if you could hear the tiny passengers screaming...

The girls with Santa - I was just relieved to get a shot before her lip started quivering as she is very attached to her parents these days and a little anxious with strangers - even jolly bearded present delivering ones!

Here she is on Christmas morning - she never really got the hang of opening presents, I think she was really just too overwhelmed, her big sister was more than happy to help her.

Sophie is doing quite well, we were able to arrange Sophie's first injection day to be next Monday on Martin Luther King Jr Day which GRPS takes off so Craig is able to go with me which is crucial as I know it will definitely be a team effort to do the injections this time around with our wiggly one year old. Here she is getting wild climbing into the pots and pans cupboard!

One of her ports has become pink this weekend and we are keeping a cautious eye on it. I feel as though it is a little late for it to be any sort of infection and it is not what Dr. Mann has taught us to identify as "angry red" so we are waiting to see.

I wanted to send a link to a hospital magazine from Chicago where Dr. Bauer works (he is the Nevus guru and our surgeons former mentor during his fellowship there) and the article features a girl named Allie whose parents are a part of my online support group. As Allie is a little older I believe she had had surgery early on as a baby and had a face full of scars as a result and it wasn't till much later where her parents heard of Dr. Bauer and tissue expansion which they used in I think 5 rounds of expansion to remove both nevus and scars from previous surgeries. Anyways I thought it was a nice article and I would share if you were interested. Again it makes me very glad that Sophie is able to go through all of this fairly early on. If we can get the majority of it done before she reaches school age I will be a very happy Momma.

I am feeling full of hope as we start the new year. Last year literally all my dreams/goal/aspirations seemed to freeze in time as I started out on this journey and in the last few months I have caught myself thinking so many times Wow I can't believe we have been at this over a year already. I now need to find a balance. Yes my girls are my priority even above myself but I am not giving up on the ways I know God wants me to grow individually as a person just because I have this new challenging circumstance to face. He carries me through all the rough patches and I am so thankful to have such a loving Lord and Savior. I hope you all feel his love at the start of this new year even in the midst of your battles, with hard times all around us in the economy, losing loved ones and jobs, and countless other trials that rock our world, my prayer for myself and hope for you as well is that we prioritize our lives to love and serve God first, our families second and our world in anyway we can. God Bless, Amanda

http://www.northshore.org/uploadedfiles/publications/Connections.pdf

Making progress

Well it has been a rough day and a half. Her surgery went as well as could be expected but it was late getting started and went way long. She has another set of balloons in, one in front, one in back. Also a large silver dollar size mole on her leg was halfway removed. It was almost 9 pm before we got home with her and I was very concerned as she will be ok in a position but if you attempt to pick her up or even if you are holding her and move your body a little she begins to scream in pain. That is a pretty heart-wrenching experience as a mom to not be able to comfort her when she cries. Now I would say by the time she went to bed tonight she was about 25% better then yesterday so I expect things to continue to improve pain-wise. We came up with one solution and busted out her old baby papasan seat and we carry her around in it which is easier than holding her. Now she wasn't scheduled to see the surgeon until Jan 4 but due to her high amount of pain he didn't want to wait to see her so he asked us to bring her in on Mon when he was already supposed to be on vacation. I continue to praise God for the care we receive from this fabulous physician. I think it is so cute when he calls her "Soph" which is our nickname for her and he constantly displays his high caliber of care. While the last 24 hrs have left me completely emotionally drained I wouldn't say I was empty and I would be remiss if I didn't give credit where it was due. The Lord continues to bless us and while yes I see Sophie suffering through pain I know that were it not for the constant prayers not only could things be much worse but our tolerance/ability to stand up underneath the weight of these burdens would be significantly different. I am SO thankful for the many people who are constantly sending notes of encouragement and prayers. I am SO thankful to my family and friends who take time away from work and their own busy lives (especially the week before Christmas) to pray with us the night before surgery (thank you Carl, we love you) to sit with us at the hospital (Thank You Thank You Mom and Dad!!!), watch Grace and take her out to have a fun time (I swear this week has been the most fun week ever for her and I think it is good that we try to downplay a little of the heavy burden of the situation around her), bring meals to my house (thank you Wellspring church, I love you) and just let me know how much me and more importantly Sophie means to you. Its those constant messages and people reaching out to us that carries me through. Admittedly for a variety or reasons lately I have been feeling very sorry for myself, it even has put an enormous damper on my usually unquenchable Christmas spirit. Sometimes I feel like its me and Sophie against the world and I struggle against feelings of bitterness that this is a constant battle for me with no end ever in sight. However, tonight I feel a lightness in my heart that I haven't felt in a month. Feeling the power and unity of the body of Christ reminds me I am NOT alone. Poignant more than ever to feel the presence of Christ in your life so powerfully at the season of His birth. Thank you, I love you all and God Bless you all in time with your family this Christmas. Please take time to THANK God for the blessings in your life and most importantly for the greatest Christmas PRESENT ever, his PRESENCE in our life. Please continue to pray for Sophies healing and if I could ask a special request it would be please also reach out to Craig, because I am the blogger and the facebooker and the emailer and we live near my family I get the bulk of the love and he tries to be the "brave, tough Dad" but I know he needs to feel that his people love and care too about our struggles so this will be a secret between us, please let Craig know how you care. Thanks again. Love and Christmas blessings, Amanda

Here we go again...

So tomorrow we begin another round of expansion. Sophie is having 2 more expanders put in, likely one in front and one in back again. Her surgery is at 12:30 and so her fasting schedule is much like last weeks for the MRI which went really well. I don't have the results back yet but the Dr's initial reaction was that everything looked fine. Anyways I am not looking forward to her coming out of anaesthetic again so soon, you feel so helpless when they are so miserable. Anyways we are not going to have to stay overnight, I would imagine it would be many weeks before we worry about injecting. So for now here are my prayer requests:
1. the surgery
2. the recovery 24 hrs after surgery
3. no post op infection (this is especially important as it is the week before Christmas and we are going out of town as is the Dr.)
4. this round of expansion will be successful (I keep thinking that since they are putting in balloons 3 and 4 and 1 in 4 supposedly fail means that one of these is doomed but Craig gently reminded me that is not how statistics work and is definitely NOT how God works, I am so blessed to have Craig around!) Well thats it, please say a word of prayer for us tomorrow. I will update on #1 and 2 soon. Thank you all. Amanda

mri

Hello all, we made it through the MRI today, it was a LONG day! Its funny, I thought the hardest part was the before when she had to fast and she did fine and was her normal sweet and social self flirting with patients and staff alike. The after I thought would be a breeze because I naively (that is probably not a word, sorry Sue) assumed that previously when she would scream and cry coming out it was from the pain of having surgery and that she would be groggy and hungry but no big deal this time. Well she was pretty unhappy for a long time and is still what I would consider "fragile" as she is taking a nice warm bath right now intermittently starts to cry. But overall it was a success and if we focus our prayers on a crystal clear result she will never have to worry about that again. We have our pre-op appt on Mon and then its gearing up for surgery on the 15th. I feel as though I am trying to keep my head down and barrel through this month, hold my breath until January and then breathe. On top of all of these things I may have to change job locations (quite involuntarily) and believe it or not I got summoned for jury duty AGAIN! I feel as though it is raining inconveniences. I am just glad I did all my Christmas shopping before Thanksgiving! Well enough griping for tonight God is good, he got us through a long difficult day and gave me two wonderful parents who sat with me for seven hours at the hospital so Craig didn't have to take another day of work. Now I am of to cuddle my sweet baby girl off to bed. I will write again after our appt on Mon. Amanda

A little business

Another fun pic of me and my girls from the fall photo shoot!

So glad she finally said Mama! Oh well, I have always know she is crazy about me by this look!

So it has been a whole year! I am AMAZED! To think of the year that we all just went through from the minute she was born and I can't believe how much the Lord has worked to make a very difficult situation go well and while it is not quite what I was picturing for any of us it all is happening according to God's purposes. Well, unfortunately our break is quickly coming to a close. With her birthday and Thanksgiving marking the last two weeks of our time away from focusing on the Nevus. Well the schedule is December 3 is Sophies MRI, she has a preop appt the following week and her next surgery for tissue expander placement is December 15th (the week before Christmas -ugh!)

First I wanted to reveal her stomach and back pics from the first surgery I waited a long time to show you to allow as much healing as possible.

The stomach balloon on the left side was pulled down to her waist.
When he pulled the skin down and across the stomach it formed a pouch of extra skin called a crown that he will eventually use to stretch further and minimize scarring.
The back balloon was pulled down in a t formation and the right side which was blackened is still bright pink like a scar, I don't know if that will ever heal or if he will eventually remove it in future surgeries.

Lets talk MRI: Here is the lowdown which will hopefully clear up a little confusion. People with Giant congenital nevus can sometimes have something called neurocutaneous melanosis (ncm) which basically means the pigmented cells go all the way down into the nervous system which is the brain or spinal cord. Now we are doing the MRI to see if there is any evidence of this. Here are the possible options:

1. No NCM (by the way this is what we are praying for)

2. NCM present that eventually disappears or is nonsymptomatic and never causes problems

3. NCM that causes mild symptoms (seizures, etc.)

4. Severe NCM - possibly fatal

The reason for doing the MRI is if she ever did have a symptom like say a seizure then we would have a baseline which could help determine if there was a problem that was progressing. Thats it, we are doing to help Sophie if she needs it. Obviously there is some concern that something will show up and then I will worry about it nonstop but I did read that if a child with NCM is going to have symptoms they show up in the first year in over 90% of cases so I am feeling a peace with this decision. I am obviously somewhat tired and stressed about the feeling of starting all the surgeries and shots and medications all over again but I want to believe that it will go just as well as last time.

On a very serious note, a few weeks ago my sweet little 16 year old cousin Swan died and my Aunt Susan and Uncle Jed are living my (and every parents) worst nightmare. I have realized that we as parents work tirelessly our whole lives to do everything that we possibly can to keep our children safe and healthy and the bottom line is nothing is in our control. Love, hope and faith, this is what we have. We can love them like crazy, hope for their safety and health and have faith in a God that has our and their best interests at heart. To my Aunt Sue I love you and promise not to take a single moment for granted in honor of your darling Swan. To everyone out there praying for us please pray for my Aunt and Uncle as well when you pray for little Sophie. I will update you about the MRI/surgery as needed. God Bless, Amanda

A little fun

Beautiful sleeping baby smiling in her sleep!

Well its been awhile! I thought I needed to do this today as I had been waiting for the right moment and today seemed fitting as today is....Sophies 1st Birthday!! I am going to do two separate entries one that is fun and one that is business. For fun I will tell you that Sophie is doing extremely well, she is up to seven teeth just this week, cruising all over (moments from walking I think), she is learning more and more words although she held out and never said mama until finally last week much to my chagrin. This weekend she had a birthday cake at Grandma Travises house with frosting abundant, as you can see!

we took fall photos outside

and tonight she had her birthday dinner with a bow on her head!

I would say the main reason that I haven't posted in awhile because I was relishing the period of time we had to be as "normal" as possible between procedures. And now on to business...

OK, so I was not going to do update because I am SO tired but I am also SO excited to share so here goes... Last week when Sophie had her surgery as we were literally walking in the Dr said "Oh there is a possibility that some of the tissue doesn't make it and turns black and die" so after what was a MUCH longer than anticipated surgery everything seemed to be going well. I think initially I wasn't prepared mentally for the big incisions all over. When you look at before and after pics its after after not like seconds after if you know what I mean and the incisions have time to heal. So initially I was a little let down by the appearance. Then we passed the time and really Sophie was just sleeping and had no interest in eating so eventually around 10 or so Craig and I went to sleep (I got the little cot thing and Craig dozed in a chair - good man!) When the nurses would come in Craig or I would get up and we had seen that one of the drains was bleeding a little early on but not too bad. Well around 5 am I thought it was about time to reposition Sophie and Craig and I thought we can do this without help and I went to roll her on her side and she had been on her back and the bed was covered in blood and as the nurse came to investigate I discovered the purple area. I was emotionally and physically sick! I thought oh no this is the dying tissue. I remember sitting there thinking of when Jesus asked the disciples to "watch and pray" in the garden of Gethsemane and how many times I have thought over the years "how could they fall asleep?" and here I am sleeping when my sweet little baby needed me praying for her. I was filled with shame. Later the Dr said it was too early to tell if that area would make it and we would just watch and see. (Try watch and pray! I learned my lesson!) Later that day I took a nap with Craig and Grace. Grace was laying next to me and had a tank top on and I was looking at her sweet little perfect back and thinking how awful that at nine months old my little baby girl has feet of railroad track scars all over her body, more than some of us have several decades later, I felt so sad! That night I wept bitter sobbing tears into my pillow. How can we go through this again and again, year after year? How can I make things right for my baby!? Unfortunately we came home with the drains in which ended up being a whole fiasco where they required constant dressing changes as she would bleed rather profusely at the drain sites but not into the actual drains! We only emptied a few drops once! So after 4-5 days of constant laundry loads of blood soaked tshirts and sheets and blankets and dressing changes 4-5 x a day (we were only required to change them once mind you but we had to more because she was soaking through the gauze) which was not fun (ask my mom and dad) as it was the only thing that seemed to cause her pain. We came up with an elaborate configuration so she wouldn't see the drains and pull on them to pin them up to the back of her shirt and put a stretchy net tube around her torso and we called her the little uni-bomber because she looked as though she was ready to blow some place skyhigh! It was amusing! As the days went by we were told to keep watch for blistering that was the sign that the skin was going to die. Tue night when we changed her bandage there was a second spot that was REALLY dark, blacker than the other spot which had virtually not changed. Craig and I were heartsick. Wed afternoon the Kerkstras from church came to pray with us. We sat little Sophie on the dining room table and all put our hands on her and prayed for her healing and specifically that spot. Literally as they were leaving Craig got the mail and we opened a letter saying the surgeon had booked her for surgery the next week and we had been told that he would set aside time in case he needed to drain it or fix the dying section. Then moments later we noticed that a new section of her shirt had stains. We suddenly realized this wasn't the side with the drain and pulled up her shirt to see it darker still, draining fluid and two circles that looked like blisters, I thought Oh no this is really happening. I was brokenhearted all Wed evening, had trouble concentrating at bible study, would frequently burst into tears in the car. Well if ever joy comes in the morning....This morning I had to work and was concerned about getting bad news at work but felt almost relieved that Craig was bringing Sophie in. They went to see the Dr and....

(From Craigs Prayer Journal) Praise God, the Jehovah Rapha - the Great Physician, My Savior, My Righteousness. Holy Holy Holy are you God, the Healer, you are SO great! Awesome, wonderful, So good and merciful. Holy Father, Thank you for your continuing answers to our prayers and your miraculous healing hand on my daughter. Yesterday fear crept in that her back flap was dying, but you rescued it from death and brought it life giving blood. You brought healing and reassurance. You brought peace and comfort, joy. You are so good. To hear the words from Dr. Mann "its healing well, it looks great" was just a wave of relief and assurance that not only are we doing the right thing but more importantly that you the Creator of all, the one who forms us in the womb is in control and orchestrating every detail, even to the point of her preferring to sleep on her stomach so that the back would heal with minimal fluid build up. Oh praise you, you are holy, holy, holy. Thank you God for such a great cloud of witnesses, all the people who pray for her - family, friends, church people, people we don't even know. Praise you God for all these wonderful prayer warriors....

I second our devoted thanks to all of you! Basically Craig described a red ring that has formed over night around the dark areas indicating that blood is flowing up from below, that new skin is forming. Where there was death God has brought life! Amen. I just had my second to last bible study on the book of Daniel last night, and we were reading in Revelation that the ultimate enemy that Christ will defeat is not the Antichrist or Satan, no its death! He will destroy death! And I just witnessed a preview in my living room! Wow. Craig and I are blown away! So yes it was a good day! I will post more pics later when it has a little more time to heal. The Dr is already planning to start the next round of expanders in a couple months. I hope this time goes slow and we can just enjoy being "normal" for a little while. Thank you thank you thank you, a hundred times thank you to all of you. An especially big thank you to my Mom and Dad, who sat with us ALL day at the hospital, prayed with us, encouraged us and dried our tears (and Sophies too!) and also survived assisting with a horrific bandage change and got an unfortunate taste of what we go through far too regularly. Thank you to Mom Travis for coming and giving Grace a ton of fun and attention, for doing laundry, cooking, grocery shopping, dishes! You rock! We wouldn't have survived without you either. You pick up all the loose pieces even making sure the dog isn't neglected. It came in handy that you are a nurse too!! Thank you to my sister Ange for having Grace over last night so Craig could take Sophie to the appointment alone. And for our church and specifically the Kerkstras for praying with us! I could go on and on, everyone is awesome. Please watch the video above and praise God with me! Amanda and Craig!