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!

this will be brief...

Hey everyone, this is a brief initial update. Yesterday was LONG! Much longer than we expected and while they sent us home there is a little concern about part of the skin in this picture you see that is purple could be bruising and continue to heal or could not have enough blood flow and turn black and die which would mean she would need another surgery soon. I am too overwhelmed to go into everything right now and her front looks great and although the scars are intimidating I know they will heal and fade but please put all your prayers into this section of skin for I know that my God, the Jehovah Rapha, the God of Healing is a mighty God. The other secondary request is that we did have to come home with the drains in (those clear grenade looking things with blood) and I hope we can juggle those ok until Thurs without mishap. Thanks to all for love and prayers! Keep em' coming! More to follow...

Amanda

Fridays the big day

Hey all, this week has been a whirlwind. I can't believe in 36 hrs we will be checking in to the hospital for Sophies expander removal surgery. Seriously this is huge! This has been her whole life so far almost they have been in. I have to tell you all we had the most silly blessing tonight but who says God doesn't care about the small stuff. The nurse called to tell me the preop instructions and apparently the fast for formula is 8 hrs vs breast milk is 6 hrs and I just weaned Sophie 3 weeks ago. So on a whim I dug through our freezer and found one lone blessed bag of frozen milk, a gift from God. So her surgery is noon on Fri. So she can have that wonderful breastmilk for breakfast at 6 am (No cheerios though, sorry kid) and clear juice until 8 am. We will be staying overnight again this time and Craigs mom is coming to stay with Grace. Her surgery should only be a couple of hours and she should actually recover faster this time but initially its a little tougher with the drains to reduce the swelling. We had a nice relaxing vacation last week which the Good Lord knows I needed so badly and I felt a lot of guilt at first about not going to my Grandmas funeral but when we were in the car on our way up to the upper peninsula I felt this tremendous release through my whole body that I could finally relax! I feel as though I have been holding all this stress so tightly in my body about many things that I couldn't believe how good it felt to just get away. Sophie is doing awesome! We did her last injection last night and bless her little heart despite those giant balloons she has invented her own mode of transportation I call the "lurch" because its not quite crawling. However next week she will feel so liberated. Please join me in prayer for her on Friday. I have been so blessed for all the prayers she has been getting through this journey! Love to all, Amanda

Well I have been waiting for awhile to post, a little overdo as I have been "processing" a lot of info lately and lucky for you all I am finally doing this update when I am in a particularly cheery mood and have had a great couple of weeks. You see its summer, Craig was blessed with a summer school job that provides much needed finances but also makes him excitedly more accessible. We have had several fun swims in my moms pool (who is the lovely photographer of these darling pictures) and yesterday was Fathers day and today is my husbands birthday and the weather is so hot that I am enjoying doing computer stuff in the basement rather than freezing down here for a change. Sophie is down to 4 meals a day and still sleeping through the night (which is liberating for me) and last night even slept in Graces room instead of our room. Things are going well for our family. I had been so hoping to tell you that we had already had the balloons out at this point but it turned out that the surgeon was pleased with the progression and has scheduled removal surgery for Fri Aug 14th. We were hoping to have that behind us for the summer and we were also hoping for this process to be a lot faster. In fact we have more than doubled his original estimate of the time frame and he gives no reason or explanation for the discrepency which is very frustrating. I also try not to get into comparisons with other surgeons who do 6 week expansion of these balloons by injecting a lot more once a week. I have been giving all these frustrating feelings to God have been surprised at different ways, people and circumstances he is using to lift me up. Even as we speak, I am listening to a series of sermons by the great Chuck Swindoll called "Special Words for Special People" that he has done for several weeks about dealing with children with birth defects and as I stumbled upon these messages I have been rescued from sorrow and felt loved and understood so many times in recent days in a way I haven't experienced since little Sophies birth. God is good and he is caring for my heart and ministering to me. I had been a little apprehensive about asking Dr. Mann about my question of the use of dermabrasion and he took it well and explained that Sophies mole was so pale in the front it was worth a try due to how much easier it is than the balloons. I posted some pics to show not only how big the balloons are getting but you can see on the right side of her stomach opposite the balloon how pale the area he has done the dermabrasion on. She is so happy and thriving and you really would not know all the difficulties she has faced and will continue to face, she is rolling front to back and back to front, she is almost independent at sitting and she even said "dada" yesterday for Fathers day! Seeing how happy she is despite all THIS I know that God is caring for us on a daily basis and we are making the right decision for our daughter. Thank you all for your continued love and prayers, they are helping so please keep them coming.

Front view: Shows the lightened dermabraded right side (her right)

Side view: Also dermabraded still pink spot on upper back left (her left)

Aerial view: I always giggle that it looks like she is trying to grow a second head! I am amazed that she was able to learn to roll over, its like working against a speed bump!

God bless and have a great week, Amanda

A little update

I wanted to give everyone an update since people are constantly asking about Sophie and I know I haven't posted since her surgery. Today is a good day for Sophie, she finally was able to go the bathroom (its been a week, poor thing!) Last night we finally caved and took off part of the bandages and hope to take off more tonight. They were leaking and we were unsure of the color and odor of the leakage. Man I wish I had paid more attention when studying wound care in grad school, I had NO intention of treating wounds because I normally don't have the stomach for that sort of thing. Its amazing what God and love can do. I found myself praying little 10 second prayers for Sophie all day long yesterday. I was so anxious at work knowing that we were going to do the whole bandage thing last night. It went amazingly well thanks to prayers from myself and all of you I am sure. In fact when I think of the fact that the bandages were on nearly a week compared to the one night last time I am so thankful of how she is doing. And she has maintained her sparkling personality throughout this time, albeit a little more quiet and reflective still smiley and talkative when she wants too. In fact she has a new friend! I put this little bear blanket in her crib with her the other day and when I went to get her up after her nap she had her arm around him. Super cute!

Her followup with the surgeon is not until June 1 so we have a ways on our own yet and I plan on taking a little of the dressing off every night as able. Ironically with all the prayers for her bandages to stay on they are stuck on pretty good but like I said they were leaking and due to the color, etc. we need to take the bandages off and dress them with special cream with antibiotics in it and now the bandages are taped on so good they won't come off. She was crying quite a bit last night and we only got the worse part off so lift us up in prayer if you think about it between 7 and 8 pm every night as we will need to change the bandages. Ok I decided to link a song now and again to share my feelings in a more eloquent way from time to time. The above video is a song I have been singing to little Sophie a lot lately. I hope she will feel the same confidence in God's plan someday, I know I have used this song to get through other rough patches before in my life. Peace and Love, Amanda