Can't believe how long it's been..

I have had nothing major to report in so long, we just have been loving summer and dealing with Sophie's expanders and counting down the months (days, minutes) until surgery! We are now three weeks from  THE day! Luckily ArtPrize kicks off today in GR and hopefully that will keep us busy until the big day! Can you believe little Sophie is almost three, I can't!! What a busy three years.  Poor thing doesn't know it but between surgery and her birthday we are getting serious about potty training and getting her into a big girl bed! I can't believe how different life will be for us when we get over all these hurdles.   The other night Sophie was having trouble sleeping and we gave her some medicine and brought her into our bed and I was laying there looking down at her as she settled back down to sleep, she looked so big, in the dim  light wearing her sisters old jammies I really couldn't tell the difference between her and Grace.  A very bittersweet feeling, how come our babies have to get big?? So three more weeks and I hope they go very swiftly.  She has trouble sleeping, is miserable in her car seat and even when I put size 4 clothes on her she complains they are "tight on my balloons".  The funny thing is she really identifies with her balloons this time around.  I can see her little mind wondering why other kids don't have them  and she frequently points to women's chests and asks them  "are those your balloons?" It's cute to see her looking for people like her and yet sad that she realizes she is different.  It will be good for me too to be done with this round, the last few months are hard, I get emotional adjusting to the looks and questions from  people.  I do not look forward to the week of surgery but by the week after hopefully we are feeling great then!!!

In getting ready for the big day I still have many Sophie Super Supporters buttons so if you are interested in having one to wear on Wed Oct 12th I have tons left (any donations would be appreciated - they were $2.50 ea and we had to buy 50 for the walk but not that many people wanted them!)

There will be another opportunity for you to support the national organization Nevus Outreach around Christmas time.  Little Sophie will be featured in a calendar as "Miss November" of kids who all have a nevus of some form.  The more preorders we get the price may go down but they would likely be around $15.  It will be a unique opportunity to raise money for research for the Nevus Outreach organization to help Dr's identify the cause and stop other children from facing these struggles.  It will also provide you with a short bio of each of the kids featured which would give you an opportunity to pray for more of these children with a nevus and their families.  What a great way to impact others lives.  Please consider this opportunity and I will likely start a facebook event to order if you are interested when I know more details.  If you are not on facebook and you are interested you can always comment here or email me.

You know me I must end the post with an adorable anecdote, however those of you on facebook have already heard this.  We were running errands the other morning, we do this a lot now after we drop big sister off at Kindergarten, and Sophie was crying in the car because her seat belt was hurting her.  To fit between her leg and stomach expander it's really tight but if you loosen it, it is way too big on top.  Anyways she was crying and uncomfortable in the car, "my balloon's are hurting me Momma" is not what you want to hear from your daughter.  So we go into the store and as we are going through the aisles she starts singing at the top of her "God is great God is good, blessed be the name of the Lord".  My only regret is that there weren't more people in the store at that time that could hear her praising God with the words of Job. It wasn't even from something that we had just been listening to in the car.  She is a beautiful example even to me!  I hope that she will always praise God despite her difficulties. 

Well I am touched as always when people ask about Sophie or pray for us.  Please continue to do so.  I will keep you posted about surgery details as we get closer and maybe could use some extra help with Grace around that time.  If you are interested in either a button or a calendar let me know! Amanda

Team Sophie!

Yesterday my family received an extra dose of blessing. We were thrilled to be a part of the charity walk to benefit Helen Devos Children's Hospital however what was extra special to me was that we had 37 people come out to support us with Team Sophie. I have to admit, being new at planning and organizing an event that part was tricky for me and a little bit stressful. But I was so touched that so many of you were willing to take time out of your day to support us.

 Too many wonderful moments to capture them all! I was thrilled and touched, I didn't get a chance to spend a ton of time with everyone but I am so touched that all of you were there.  While I was leading up to the big day I made a video, chronicling Sophie's journey up to this point. It was a wonderful way for me to reflect on all of God's blessings and how alive the promises in his word are and I tried to include as many as I could that have touched me over the last few years.  I am sure this video will undergo a few more edits over the years.  I don't always get a chance to do the things a mom should normally do for her kids, I haven't scrapbooked a single moment of Sophie's life yet! But I do blog and I made this video.  She is a part of my testimony now and my prayer is that all of you who pray and care for her and lift us up both near and far will be a part of her story as well that she will cherish this for years to come.  This video really is a tribute to all of you.  Thanks for all you do for Craig and I and the girls!

Meeting new friends!

Wow! What a blessing today! We went to Lansing after church (had a little bit of construction detour which almost made our GPS lady start cursing at us and after all that ended up at a bookstore that had the same address as our destination except it was in E. Lansing instead of Lansing! God could not be deterred and we were blessed to be sent to the right place FINALLY!) anyways what was in Lansing you ask?  A photography show in an art gallery called "Flesh Tones" and it featured people with different skin conditions to raise awareness and understanding about people who might look "different" to you and of course teach you to appreciate them for more than just their unique condition.  Why it was SO awesome, we got to meet 4-5 people who also had a Giant Congenital Nevus like Sophie! And three of the girls were all the same size.  And as an added praise I have been working with my Gracie on her reaction to people who look different.  You never know what might come flying out of that girls mouth! And she was great, there was a woman who had no hair and had a wig and she was talking with Grace and showing her her wig and I was so proud of how kind and mature my 5 year old took in the whole situation.  Here are a couple of pictures of our new friends!!!

Sophie and Megan (she is the daughter of the Nevus support groups director and founder, she was one of the featured subjects in the photos!)

Sophie and her new little friend Addyson

My girls with Megan and Stephanie, two wonderful adult ladies who have a giant congenital nevus! It is SUCH a comfort to me to talk to adults about this who know first hand about struggles, feelings AND blessings too!  Thanks you so much ladies! You were a gift from God!

Such a nice event, I was so pleased to be there and meet some people that I could talk to who knew a little bit of what I might be feeling. 

We are now less then 2 weeks til the big walk! We are SO blessed and touched by the number of people that wanted to participate.   We have close to 40 people! I am touched.  If you are reading this and thinking you would still like to participate, it is not too late.  Give me a call and I will fill you in on the details! Tomorrow we see Dr. Mann and I hope to know our next surgery date (or at least a ballpark) but I was too excited about today to wait to post! I feel very blessed with how God has been taking care of our family lately!!
Amanda

Update! and event

The Update is.....I have no update.  We were supposed to see Dr. Mann this Monday and all three girls in my household are ill! I have not been able to talk since Sun night, laryngitis is very inconvenient let me tell you!  You don't realize what you got til it's gone, right? We just came from watching my adorable niece and nephew run in a West Michigan run (the junior river bank) They each ran a mile and it was great to see so many kids out embracing health but it was hard to cheer when you can't even talk!  My sister actually told me about something happening next month, it's a good thing she is aware of what is going on with Spectrum Health even though I WORK FOR THEM!!! Nice, I am oblivious anyways.  Seeing as we have benefited from the wonderful services at...

...so many times and with this gorgeous new facility...

...I feel very blessed that if my daughter has to spend a lot of time in a hospital that this is the town we live in and she receives such high quality care.  Not to mention this guy....

...Gotta love Dr. Mann, he's the man!  Seriously if you ever see him walking around GR do me a favor and give him a hug and tell him thank you!

 That being said I always jump at every chance I can get to support this hospital!  So next month they are having a charity walk for HDVCH and it's in my sisters adorable little town. 

So I was looking at the website, they have a 5k run/walk or a family walk (1.5mi) I thought it would be super awesome if we could form a Team Sophie and support the hospital and come out and as a unified group to support my sweet baby girl and raise awareness about her condition.  If I can get your support to walk with us, I am going to see if I can find a place to get us team tshirts (I know nothing about this but I will do my best!) and we can have a fun event on what I will be praying will be a beautiful day and I know we could raise lots of money to help our little people in the community, because don't they deserve the best??? Let me know if you would like to do it with us and I will contact you about registration.

  Our rescheduled appointment is not till the week of the race, I hope then I will get an estimate on how much longer we have but for now things are going great, the Emla works wonders (we call it magic lotion) and allows her to get her shots with very little effect.  The only challenge is getting the timing right, having enough time to put the emla on and let it sit before shots.  Also getting clothes over her lumpy body but she doesn't mind she rests her arm on her tissue expander and strokes it and says "My bah-loon!".  If tonight is any indication of the race, Grace is more likely to ride in the stroller and my little Determinator Sophie would like to run free.  She was itching to get on that track tonight, hopefully next month she will get her chance and you can join us! 

Children of God

I struggle deeply with recent pains I face, as a parent, I know it's mostly because of how deeply we love our children. When they hurt, we hurt. When they first dip their toes in the waters of sin, we struggle with the great burden of urging them toward repentence. When they accomplish much, triumph in victory or celebrate any milestone we expect the whole of the world to stop and applaud at their acheivements with us. Our love is big and that makes it painful at times. I have experienced many heartaches lately especially when it comes to the ugly truth that no matter how much you love you cannot protect them from hurt and evil, this is after all the real world, not heaven. Today I was driving along and I heard the above linked song by Third Day, Children of God which of course I had heard many times before but today it struck a distinct chord. My God in Heaven loves my kids even more than I do, they are His children too. All those deep feelings and burdens I feel for them he feels even more! He has a plan for them and He is much bigger than these "momentary troubles" and it is "achieving for us an eternal glory that far outweighs them all" (2 Cor 4:16) How Wonderful!

And then I had a perfect moment of clarification, I am His child too. So when I am brokenhearted, feeling defeated and alone God feels pain because as His child He desires to keep me from pain and He loves me so much. There are SO many times that I can't begin to fathom how I ended up on the path that I am on, I always say that I don't know why God thought that I was a strong enough person to be Sophie's mom, she needs someone who is more disciplined, with better self-esteem and self-awareness, a much stronger woman of God, a better prayer warrior, I could go on and on about where I lack. But then when I look at what I have been through not just with Sophie but even way before she was born and I realize I am a survivor and He is teaching me more and more every day. I feel like some people do get a much easier road to travel but if I can share with Sophie that I understand a little about scars (metaphorically speaking) that makes my difficult journey a beautiful story indeed. My prayer is that I can always always always point my children to Him and that I can be open to the uneven terrain of this path I am on and that I will "have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us." (2 Cor 4:7) Thank you God, that you count me as one of your children!

Now enough about my "issues" here is why I am supposed to be blogging, to tell you how Sophie is doing. I would like to do a quick summary/recap of where we are at for new readers or just because people constantly ask me questions that indicate no matter how many times I seem to explain it some are really still unclear about the situation. Sophie was born with a GIANT mole covering almost 40% of her body at birth. It is extremely rare. The treatment is removal due to many reasons: 1. Most importantly - high cancer risk, the more we remove hopefully the more we remove the risk, and if it did become cancer you can't quick remove 40% of your skin so you sort of need to get a head start 2. Discomfort it causes her to itch incredibly (dry skin and thick hair on mole) and overheat (she got multiple fevers last summer because of the size of the mole and it doesn't sweat) 3. Appearance - obviously we want her to look as good as possible for her own self esteem but this is NOT why we are doing it and in the end we are replacing moles with scars so she will have many appearance hang-ups to overcome I am sure as well as the fact that we won't likely be able to get the whole thing, she has hundreds of mini-moles or her polka dots of many sizes all over her body which continue to appear forever. The removal process is that you put tissue expanders under good skin, stretch it out (by injecting it for many months, about 8 usually), then you remove the expanders, pull down the newly stretched good skin and cut out as much of the mole as possible. Sophie has had seven surgeries already. She now has 4 tissue expanders (balloons as we call them) in, one on her leg, two on her tummy and one on her back.

We are supposed to inject them, originally we were going to do 2 every day, I thought I would rather get all four in one day to give us a day off in between. The first 2 times we injected went pretty good, the last 2 times were awful. Tonight we tried to role play with her Dr kit and dolls first, we gave them shots and comforted them, etc. That didn't seem to help, when she sees the real shot paraphenalia she starts crying. She needs to be fully restrained, she screams, all the while drooling chocolate that Grace and I are desperately feeding her thinking it will help her. And of course Craig gets tense when she is screaming and screaming and many times the needle wasn't in the port correctly and we have to pull it out and put it in again in order to get the fluid to go in so she ends up getting even more then 4 shots. She says things like "no more owwies, Momma" which of course is heart-breaking. And I don't want to give her or Grace some sort of traumatic stress disorder (Grace got sort of traumatized watching it one night). It's definitely a heavy scene. Tomorrow we are going to go get some numbing cream from the pharmacy and it has the potential to make it so she doesn't feel it so please pray that it works for us. That is about it for now, we are just trying to work out the kinks. Sophie will be getting shots about 7pm every other night so that's a great time to offer us up in prayer if you think about it and I will let you know how the cream is working. Thanks for listening, my heart is strengthened because I know you are out there! Amanda

The end of Today

Taken in the post op recovery unit where we ended up being for three hours! She woke up and opened her eyes and pulled her blanket (lovee) and new kitty up to her and went back to sleep and snored for three hours.

So backing up a bit, today has been long but ok. I hope you are all ok, all of us in the midwest are in the middle of a blizzard and I sit here perched up on the top of this gorgeous new $300 Mill hospital looking down on the winter wonderland below and this is the first moment since 6 pm that Sophie has been resting comfortably and I have had a moment to write to you. Her surgery and preop went off with out a hitch. Dr Mann said he was thinking about her all week trying to decide the best way to go for her expanders and was on the phone with the company that supplies the expanders and he presented us with what he recommended as the option of 4 expanders (1 large one across her back, 2 small on her stomach and 1 on her thigh) what we will likely do is inject two a day and alternate, so this means shots every day. I think when I processed this info later in private, I had a "moment" in the bathroom and broke down and sobbed. I can't tell you how I used to live for those days when we didn't have to do shots! But I reminded myself all week Craig and I had been praying for Dr. Mann's wisdom and the fact that he had been trying to decide what to do all week and came up with this idea and I have faith in God's leading of this awesome Dr he has blessed us with. The cutest preop moment Sophie looked up and said "Hi Dokker Mann" when we were meeting with him before surgery. So adorable!

Like I said when she got out of surgery she slept the whole time we were in recovery and they had trouble finding us a room, the first one they had they then found out the whole floor had a respiratory flu so thankfully they decided not to send us to that floor! Around 5 pm I started to get a bad headache. My sister who had come to the hospital and sat with us for several hours this afternoon had brought us cookies and I ate a cookie and took some excedrin. Well little did I know at that point it would be 8:15 before I got dinner but by the grace of God my headache went away and I was completely sustained by that cookie (thanks God and Ange!).

When we got up to our room she started to wake up in a lot of pain and disoriented and was crying out for things. See I thought it would be so convienent now that she can talk and tell us whats wrong or what she wants. The problem comes when she has unreasonable requests. So she started saying "toy, toy, play toy!" over and over, crying, sobbing for a toy. I knew instantly, when they gave her the medicine to make her go to sleep before surgery that she was asking for the toy she had been playing with at that time. We tried other toys, not good enough so Craig ended up going down to surgery and getting the same toy and just seeing it calmed her down. But clearly she didn't have good pain control for a long time. At one point it was just she and I in the room and she looked at me and said "Go home?" and I said "Honey we can't go home, we have to stay here where they can take good care of your boo-boos" "Why Momma?" she cried. And then I cried. I didn't realize hearing her tell me what she wanted would make me so sad. So they had been having trouble with pain control, and they wanted her to eat something before giving her more meds and she was turning down everything we offered and suddenly after I asked her 50 questions and the answer was "No" to all 50 when I said "would you like to sit up" I finally got a "Yes", and when we brought out the cinnamon teddy grahams she looked twice at them and started putting them in her mouth and ate over a dozen! Praise the Lord! Then she got more meds and is sleeping peacefully now finally. The Dr thinks her leg may be the most painful because it is a new area and it indeed seems pretty unhappy when we move it while trying to reposition it.

So I have given you lots of details, lots of options for prayers. Basically pain control, good nights sleep, and a perkier Sophie in the morning! Thanks you all for your prayers, you can't imagine how I felt them all day, even when things are bad, I feel them, I feel God, and I feel all of you, my family and friends here with me! Amanda

Tomorrow is the day!

Grace has a tendancy to keep a vice grip on her sister's neck while posing for pictures. I have been so proud of her, we have been using m&m's to bribe Sophie to hold still and use her inhalers (working like a charm, gives me hope for shots!) and Grace has never once asked for candy herself as she watched her sister get them with her medicine 4x a day! She just cheered her on and encouraged her every step of the way!

Taken tonight with our prayer warriors, the Kerkstras, they come pray with us before every surgery! We love them dearly and cherish their faith and care!

Thank you for your prayers this past week, her lungs have improved and we are proceeding with surgery. The house is a bustle getting ready for another big surgery tomorrow. I think I got all my yucky emotions out last night and I was crying in my bed and then Craig and I held hands and recited the 23 Psalm in the dark together. Shall we say it again together now...

The Lord is my Shepherd, I shall not be in want
He makes me lie down in green pastures
He leads me beside quiet waters
He restores my soul
He guides me in paths of righteousness
For His name's sake
Even though I walk
Through the Valley of the Shadow of Death
I will fear no evil
For you are with me
Your rod and your staff
They comfort me

You prepare a table before me
In the presence of my enemies
You annoint my head with oil
My cup overflows
Surely goodness and love will follow me
All the days of my life
And I will dwell in the house of the Lord forever.


See don't we all feel better from what ails us. So today I kept pretty upbeat and it seemed like a pretty typical Monday. And I got to talk to my Momma who is out of town so that helped! Of course now I am just in getting stuff done mode so it's easier to not think about the "hard part". I was just saying to someone that of course we have been through this a half a dozen times and so that makes some things easier. But when it gets right down to it, I want to throw myself down on the table and say "cut me instead" to save her from pain. It's hard for my head to explain to my heart, that it will be ok. As a mom, you just HATE to see your baby suffer. But about four times today she came to me with the bottle of lotion and begged me to put it on her mole so I know she would like relief from the itching that comes with it so I am eager to get as much of it off of her as possible.


So getting down to the details. Surgery is at 11:55, we will go there at 9:55, she has to fast on foods at midnight (so she may be getting up and having a snack soon!) and then gets a breakfast of juice, popsicles, and/or jello jigglers before 8 (her big sister is kind of jealous of the breakfast selection). Hopefully she does as well with the fast as she did last time. Surgery may be longer than usual if they do three expanders and they never tend to be on time anyways but I will update as able when we are out. Thank you as always for your faithful prayers, my little Sophie is a tough cookie and I know she is brave and will come out strong on the other side of this, and I have a feeling her Momma will too!
Amanda