Today's Appt

Admiring her big sister!

Climbed/Fell in the toybox while getting ready to leave in the morning! She is becoming quite the monkey!

Well I saw the Dr again this morning. He thought her balloons looked really good. Her large hypertrophic scar on her side will be removed at the next surgery, she may have more that get big though, he said later in life we will do surgeries just to improve the scars as needed. Interesting concept, scars to fix scars. So knowing summers busyness and vacations I pressed him for an ETA on surgery, he said June they will be "full" but then we over fill and expand as able, wanting to avoid August all together due to vacation(s) we are aiming for Sept (gulp) 6 more months. This led me to ask for tips on the shots because they are getting SO hard, it is impossible to stabilize/restrain her belly and she knows how to roll it around to avoid the needle so its like playing darts with a moving target but much more important that you don't miss. He gave me a sympathetic smile and said he had no advice, this is a problem with her age and an indication that after this round we may take a break for awhile until she is in a more bribeable age (like Grace) which is all the more reason to get AS MUCH as we can this time so we are setting our sites on September, unless something goes wrong and they need to come out earlier. Finally, not to beat a dead horse, I took the plunge and challenged him one more time to explain the MRI results, and he clarified that it was indeed clear. However I said "good I can rest easy that that is clear" and he did suggest there were no guarantees that it was forever clear, I am taking it as good news unless told otherwise! So all in all a good appt, although I am exhausted thinking of six more months and seeing my husbands shoulders and face fall when I told him this as well I agree that we need to continue to get as much as possible. We will soldier on, we do shots Wed, Fri, Sat and Sun nights between 6:30 and 7 and would appreciate prayers for this process, as those of you who have witnessed it know its a tough job! An added praise was how well behaved big sister Grace was at the appt this morning, that always helps me get through these difficult appts. Have a great week everyone. Amanda

They say honesty is the best policy (deep breath) so here goes....

So I haven't posted in SOOOOO long. Sophie has been a busy little one year old to chase after. I am attaching video of her walking and in her new "squeakers" my sister got her for her birthday that she finally fits in. I think the funniest thing is that she is oblivious to the sound coming from her feet. You can also get a glimpse of her quasimotoesque bulges growing in both her front and back.


Shots have been going pretty well this time around, as good as they can I guess. I would say the more we do them the more she fights back but all in all its only like a bad five minutes of my day. Some other blessings is that we have had to use less pieces to the injections and the medical suppliers deliver to our house which is so wonderful. She has also had a string of ear infections and with signs of spring all around us Craig and I feel like a couple of bears emerging from hibernation and we are so anxious for warmer weather, less time couped up indoors, less illness and more fun family time.

Craig has been under a bit of stress with taking a class and his less then ideal teaching job and the changes in his job he will likely face this summer. All that to say that when we open the window and feel those first gusts of chilly spring air our entire household seems to take a collective breath of relief. Change is coming, its part of life that we can't control and it keeps on coming and no matter what you do to "prepare" there will be new circumstances that throw you for a loop. Our situation with Sophie is teaching me that. I have been holding so much inside, wanting someone or something to blame, even if it is myself; wanting to believe that I could get the whole thing taken care and magically erased before she was old enough to know what was going on, wanting to believe that things I want and feel are just out of reach in my life are a physical example of my lacking, not deserving or just plain suffering at the injustice of it all. Yesterday our pastor delivered a sermon almost directly to me in that regard. I was humbled and in some ways freed from these expectations that we have to hide all the bad in our life and slap a fake smile on our face and keep working on "pleasing" God. The truth, that we are all flawed and hurting and need grace and forgiveness and sometimes a swift kick in the pants is so much more vulnerable and honest and even shameful. I have been struggling for many years with health issues and sometimes I feel as though I have been buried under a heap of rubble and will never claw my way out. With Sophie I feel this intense pressure to change who I am to be a better example for her. How can I teach her to be proud of herself and stand tall and strong despite her innumerable polka dots and growing scars if her own mother hides in shame and wears a mask? I am stating now before God and these witnesses that I am crawling out from my pile of debris and making my changes, one painful change at a time. I have changed the way I am feeding my family jumping on the clean eating train with my parents and other friends. I am cutting out time wasters and playing with my kids more. I am engaging in productive activities so at the end of the day I can stand tall and say look what I have accomplished today and be more proud than ashamed. Its been a tough month but I am trying to make changes that will last for my family, after all I am a Mother, its what we do. Nicole Nordeman wrote a song called Brave when her first child was born talking about the strong tug on your heart when you are a parent to be better. "So long status quo, I think I just let go. You make me want to be brave. The way it always was is no longer good enough, you make me want to be brave." I feel strongly that even if the walls of this little house are the closest I see to a mission field I need to serve God to the best of my ability in my home. There are so many wonderful things that I so richly was blessed with growing up in a home saturated with love from Godly parents. I want my girls to grow up with those same memories.
Finally I was sent an email with this video that I have linked at the top of the blog. It humbled me beyond measure. I pray God will give me a servants heart for Sophie like the Dad in this video and that he will bless her with the same enduring spirit and steadfast love that this young man exhibits. Please take a moment to watch it and be blessed.
Carrying on in bravery and trust....Amanda

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