One step at a time!

Hey all we just got home from our pre-op with Dr Mann for her upcoming surgery.  This was the conversation we had on the way home:
S: Momma I love Dr. Mann, he is one of my Best Boys (term of endearment we usually reserve for Dads and Grandpas!)
A: I'm glad sweetie.
S: Momma why was Dr. Mann tickling my tummy?
A: He was measuring you for your next surgery, you are going to have more balloons put in soon.
S: Yea! (literally ear piercing squeal of delight!) Oh good, so we get to go to the hospital!
A: Yup in a few weeks, just after your birthday.
S: The hospital is so cool, it has bubbles and toys and movies, I get fuzzy socks...
A: ...And don't forget your cool tiger jammies.
S: Yeah and you and daddy and Grandma and Grandpa come see me! Thank you so much Mommy for always staying at the hospital right by me, I love you so much. 
(as if I would be anywhere else! The fact that she is so grateful is adorable!)
S: I wish we could go right now for surgery, I am so excited. 

So you can imagine, as a mom, as HER mom, how it thrills me to have this conversation.  No fear.  Just joy.  She is so sweet and brave and I want to be just like her when I grow up!

This week is Halloween and she is an owl, check this out...

 

Yeah that face melts my heart!

 

So what is next on the agenda.  She is getting two large expanders, one across her tummy and one across her back.  The one across her tummy will essentially get rid of her natural born belly button. Is it weird that tugs at my heart a little bit? She was once anchored to me by that thing! Which means some day he will have to "build" her another belly button.  Didn't think she could get any more original!  So immediate prayer requests going in to this surgery...

 

1. She is super congested from asthma and Dr says she could have surgery the way she is but we don't want her to get any worse.  She has three weeks to get better so hopefully her lungs clear up somewhat.

2. She continues to be cheerful regarding surgery and not get anxious (maybe that she will rub off on me!)

3. For those of you that don't know we are expecting our third baby and I am right on the cusp of the second trimester and really hoping to be feeling better soon, I don't feel like I could handle surgery feeling this way.  So regardless that I can hold up through the whole ordeal in my current state and still be 100% present as Mom for Sophie. 

4. Safe and successful outcome.  We have never needed to stay two nights and we certainly wouldn't want to this time.  I know nobody wants to spend thanksgiving in the hospital so I am hoping to avoid that.

 

 

Now to have an honest conversation about the future and the "big" picture.   One question I get asked A LOT is various forms of "You're done now, right?" or "This is the last one, right?" or "I thought you weren't doing any more." If you have phrased similar thoughts to me, don't feel bad, even her pediatrician says this EVERY time I see him.  I know everyone means well.  I see it in your hopeful smiles, almost as if an imaginary pen is hovering over an imaginary prayer list, you are ready to cross it off, mission completed.  I will reiterate as I do to all who inquire and as I have ALWAYS maintained since my first visit with her plastic surgeon when I sarcastically said "She isn't going to be still having surgery at 15 is she?!" And he responded very matter-of-factly "Yes, most likely." From that moment on Craig and I have vowed that we would take it ONE STEP AT A TIME.  And this motto has carried us so far. Further than we could have imagined actually.  What do I know at this time? That she is having more expanders put in.  At some point those will need to come out.  That now she will need to have a belly button creating surgery at some point.  That she will need scar revisions (maybe multiple) at some points.  She may even have more expanders.  I just don't know.  We take it one step at a time.  I would appreciate it really if you could just join us in praying for the moments.  Cause in my heart of hearts, my most vulnerable "Mom place" I will never be "done." When/if someday we are done with surgeries it doesn't erase the fear of cancer, the sorrow I feel so sharply when like this past summer two pre-teens with her same condition passed away, it doesn't account for the times she will come home from school crying after being teased or whether or not a boy will find her ugly or not want to marry her.  (Of course some of these anxieties are felt by every Momma, almost all kids are teased about something, we just have the most likely candidate already figure out!) But the bottom line is that I will never be "done" being her Momma, I will never cross her off my prayer list.  I also try not to get too ahead of myself.  I know that many of these bridges are to be crossed another day and I try not to dwell on them, the fear of her future does creep up on me at my weak moments but I have vowed with Sophie to take it "One Step At A Time" and I work very hard at just that.  I read a really great book once by Stormie O'Martian called "Just enough light for the step I'm on: Trusting God in the tough times." So poignant for this situation. God promises that His Word is a "lamp unto my feet and a light unto my path"(Psalm 119:105), notice not stadium lights or floodlights that show us all the way to the end.  How would that build trust and faith?  He shows us just enough so we can walk without stumbling too badly but he is there with us in the moment.  Sophie is doing great right now, as you read above she has been blessed with a great spirit and attitude, at this age I don't think it's as much of "she doesn't understand whats going on" as "this is all she has ever known, and we have always taken care of her through all these situations and she trusts that it will continue to be ok because she has a team of people who love, care and pray her through the tough times." That is where I hope and pray she gets such a great attitude from.  You are a part of that team, with all your prayers we have lived through the unimaginable and are a stronger family for it.  So please don't cross us off your prayer list yet.  Just pray in the moment with us.  Take it "one step at a time" with us.   This time around you have your mission listed above.  Surgery is slated for Tue Nov 20, just two days after her 4th birthday and two days before Thanksgiving, definitely reminds you to be thankful for the truly important stuff.  He only took two cases that week due to the holiday (as always we sort of fussed when he was going to schedule us in Feb so he squeezed us in, he is so awesome!) so being the younger of the two cases she gets to go first at 7:30 am which is so awesome (we usually are at noon or later!) This will be very nice in terms of fasting so our first praise of the surgery already answered!  Thanks in advance for praying us through.  We love you all. 

All I can say is WOW!

Seriously people of God, you are so amazing!  Your prayers cover us like a blanket!  As I sit here typing this at 5:15 look who is next to me...

We have never had such a quick, easy surgery and recovery. And we are HOME!!!!! She is eating pretzels and peanut butter and watching Dora.  She is wincing a little bit and just had her first dose of pain meds since surgery. 

She has one little (at least for her) incision on her right side and on her right ankle.  She is so brave.  I joked with her today and said "Sophie I want to be just like you when I grow up!" She seriously hasn't shed a tear. She squeezed my Momma's finger tight as they were taking off the nasty tape and removing the IV but never cried a tear.  In fact her first words to us in the recovery room were...."I want to go to the playroom!" What a trooper.

Here she is getting love from Grandma right before we got discharged from the hospital! She is so sweet!

This was right before surgery. The amnesia medicine makes her very loopy and makes her nose feel funny! She is always so cute in the adorable Tiger gown.  She did so good with fasting. She only asked for food once when she spied some cookies in the kitchen this morning. But who can resist asking for cookies?

This was actually waiting to get checked in at the hospital, she was dancing and singing praises to God. She kept saying she was excited to play in the cool play room. 

I show you these pictures to help you visualize the answers to your prayers. I don't have pics to show you of the people who prayed with us this morning or the church friend that stopped by to pray at the hospital.  I don't have pictures of the men praying for Craig and encouraging him at Men's bibles study and the church board meeting this week.  I don't have pictures of the ladies from church praying for us at bible study this morning and calling to offer to make meals for us.  I don't have pictures of the friend who is watching Grace and our dog (just in case we had to stay) and giving her a fun day so I don't need to worry about her.  I don't have pictures to show you of the fellowship and support of my parents and how we always laugh and laugh when we are together, they make the time fly by and keep away the anxiety.  I don't have pictures of all the Drs and nurses that were so amazing esp our surgeon who gave us an impromptu counseling session after surgery and we discussed a variety of subjects pertaining to Sophie's care going forward. He is always so kind and gracious to us, offering his time and wisdom.  But all those things happened and they happened because of all the prayer and concern from all of you.  I have no question that God is shaping Sophie to be a living testimony to his amazing love and grace.  I consider it my privilege to be her Mother and share this journey with you.  He blesses me continuously as do all of you. Thank you so much for your prayers. 

 And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work. 2 Corinthians 9:8

Therefore, since we have a great high priest who has ascended into heaven.   Jesus the Son of God, let us hold firmly to the faith we profess.  For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are —yet he did not sin.  Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:14-16

Then your light will break forth like the dawn,
and your healing will quickly appear;
then your righteousness will go before you,
and the glory of the Lord will be your rear guard. 
Then you will call, and the Lord will answer;
you will cry for help, and he will say: Here am I. - Isaiah 58:8-9

So happy to be home....
Amanda, Craig and Sophie

Getting ready...

Sophie goes into surgery #9 on Wednesday. For a quick recap of a whirlwind 3.5 years watch the little video above. Her surgery is scheduled for 12:30 and we will supposedly be coming home that night but I never count on definites.  We would again appreciate your prayers. Sophie is at an age where I am afraid to tell her we are going in to surgery because I know that at this point she will really KNOW what that means and I don't want her to be anxious.  I seem to do enough of that for both of us! Thank you for praying for us all along.  We have had so many answers to prayer along the way as evidenced in the video and on this blog.  I am eternally grateful to our Heavenly Father and to you my praying friends and family.  I will let you know how we are doing Wed night....

All good things!

Hey all, so much fun stuff to share!
1. I am doing a therapeutic experiment with Sophie using Kinesiotape for scar softening and smoothing.  She is on her second application on the leg.  If this proves very successful I know a lot of nevus parents that will be very happy! I will keep you posted!

2. Next we went to the 1st (Hopefully now annual) Michigan (and as far as Pennsylvania and Ontario) Nevus Family Get Together! We went to an indoor waterpark near Detroit and it was so much fun.  We had 10 families and our girls were in the water for 8 hrs straight, it was amazing.  So nice to be somewhere and be with people who understand some of your biggest struggles in a way that no one else does.  Also, as parents that sometimes worry about what people are thinking, not so many strange looks when it was practically the norm to have spots at the hotel that day! Here are some of our best shots!

 Grace and Sophie got to see Addyson again who we met last year, they insisted she sit with us even though she had a lot of extended family with them. Very cute!

 Kathy and Emily, our Nevus adults at the party, we were thrilled to meet them!

Daddy and Sophie taken on the slide!

 Striking a pose!

Madeline, Addyson and Sophie, 3 nevus Michiganders all within 6 months of eachother, amazing!

9 of 10 of the nevus owners that made the get together (Madeline was having a shy moment!)

All the families together

 Too much fun! They were water babies, all day long they splashed and slid and swam and splashed some more!
It was such a blessing to me!!! God has been revealing to me all the blessings through the trials we have been through, to get to know some amazing people I never would have met if God hadn't given Sophie this extra unique feature!

3. Today we did another race for Helen Devos Children's Hospital.  Two things I am bummed about, we only had half as many people that we had last year. And....we didn't get a group picture this year!!! Bummer.  We did get some great shots though....

Our beloved Miss Sara and Aunt/Uncle/Cousins Baum all ran the 5k!!! They did so awesome!

 Gracie had her BFF there!

Fairly sure this is almost identical to last years picture!

Sophie and her cousin Brandon love each other!

Little cheering section!

I am not sure Sophie realizes yet how awesome it is to have so many people who love her! Glad I can show her this someday! Good day Team Sophie! Our blessings run over. 

John 1:16 From the fullness of his grace we have all received one blessing after another.

 

What's Up everyone?!

Not having updated this blog in over 6 months means only good things...no need. This is certainly a case of no news is good news. Sophie has been enjoying life as a normal rough and tumble 3 year old and has recently successfully potty trained so we are psyched that she is a BIG girl now! (Can't you just see the pride in those pics up at the top!)

Well that is just one of a number of things I wanted to update everyone on.

Last year we were blessed with the opportunity to meet other kids in the area that have a giant congenital nevus briefly at an art show in Lansing. 

This year we are doing a get together at a hotel and indoor waterpark near detroit, possibly going to the zoo and having a whole weekend to fellowship with a group of people who understand some of our families struggles more than anyone else, also gives the kiddos a chance to make some friends who look just like them. I feel so blessed for this opportunity and hope it is a tradition we can continue for years to come.  We have over 40 people coming I believe from Canada, Michigan and some other surrounding states.  That is our first excitement of the summer just after school lets out (June 8-10), I am sure I will do a little recap on here afterwards so stay tuned...

The very next weekend (June 16) is the Run4acause and I am hoping that Sophie's Super Supporters will want to do a team walk with me again.  (I am trying to work up the courage to do the 5k too, yikes!) Some memories...

There is some info about them supplying team logo's on tshirts this year so all new participants are welcome and we can certainly get out our S tshirt and our pins from last year.  I will be making another facebook page for the event so let me know if you are interested! Last year I believe our final number was 38, let's see if we can break 50 this year!!

Finally alas our normalcy couldn't last forever...Sophie will be having another surgery on Wed Jul 11. Good news is this is not a balloon surgery and should be an outpatient surgery. 

 These two pictures show you how her mole still comes up relatively high on her sides and Dr. Mann's goal is to pull together the sides and get rid of as much as he can on the sides without needing expansion. (I had to bribe her with a popsicle to get these pics, she is not a fan of people looking at her, guess I won't have to work to hard on teaching her modesty :) I always feel touched when I see her show someone her mole, they don't realize what a big gesture of vulnerability and trust that is for her. Her little heart touches my soul.)   After this surgery I don't know what the plan will be from there... When it comes time to make the next decisions Craig and I will need a great deal of prayer. We are very torn on where to go with things at that point.  We have been given the impression that the surgeon wants to stop (for awhile/indefinitely/completely done, we don't know).  We aren't sure how we feel about this.  Sophie still has a great deal of mole and although we knew it was too much to ever remove completely....well needless to say we don't know what we expected.  That hard decision is for another day...

Today is about all the wonderful things happening. Here is one last picture of our little Big Girl celebration with cupcakes and a new toy!  I am so proud of the sweet little girl that Sophie is becoming and blessed to share her journey with all of you readers...

Stay tuned....

Urgent prayer needed!

A few years ago now Sophie had a wound that needed your prayer.  The blood flow was compromised.  You came, you prayed, God healed.  So grateful.  She needs you again.  I have been AMAZED at how smoothly things went this time.  Pain control was amazing.  Craig and I have been ministered to through our own emotional roller coaster.  This surgery was especially difficult on my strong brave husband, I don't know why, but God has been there and holding us in his hand.  I have been diligently giving him all the glory due him and proclaiming to everyone who asked how amazing she is doing. It wasn't a breeze mind you, it was still a major surgery but now I think we are seriously in need of prayers.

These things:

Her lungs still aren't clear.  She seems better one day worse the next.  She struggles on and off with wheezing and we are using her inhaler regularly (and Robitussen!) Please pray for healing, strength, virus-free lungs.

Her stomach incision.  Be warned, gross picture....

The white section could just be fresh new skin growing up from below but it could be the start of infection.  We need to pray against this and wisdom to know the difference.

Emotions for Sophie and us.  She is very defensive and I usually am very careful to give her her space. I try not to mess with her unless I need to.  When she sees Craig and I peering at her (even without touching her) she starts screaming "Don't touch me!!!" Very heartbreaking to see your child not trusting you or fearful almost expecting that you are planning to hurt her.  Not ideal for a parent/child relationship. 

I know how mighty and powerful our God is.  I have seen it in our life again and again and again.  I see it in others lives.  Please pray for us people of God.  Our whole household feels like we have been holding our breath for weeks (or maybe months) and we are all hoping to exhale and relax and just "be" for awhile.  Every corner we turn I feel like we find another roadblock.  Exhausting.  I look forward to showing you the "fruits" of your prayers with some beautiful after pictures soon...

Faithful and True

I was sitting in the parking lot to pick up Grace today and this song came on.  I had to pinch myself to keep from weeping because I wasn't quite sure how that would look to the safety walking Grace to the car.  It's an old one with below average audio quality but still very powerful!

Faithful and true indeed!!!
Sophie's surgery went off without a hitch.  Long? Yes.  Exhausting for us? Definitely.  Has she been in some pain? Of course.  But she is such a trooper.  We literally feel as though we can sit slack jawed and marvel and God's grace and mercy.  She went through a nearly 7 hr surgery and woke up and asked me if we could read a book.  In the first 24 hrs she only officially cried once when they were taking out her IV.  Stupid tape.  I was sitting in the hospital holding her and I had a quiet moment of reflection.  I remembered that day in early December 2008 when I was in uncharted territory holding my 2 week old infant who had major surgery came out of it and literally cried for hours and hours slowly fading into a gasping hiccup with a little shudder.  I can remember the darkness of that moment like it was yesterday and hardly believe that as a Mother you can survive experiences like that with a newborn baby.  But I truly believe that we have just been being continuously refined by fire, all of us.  Sophie, I hope and pray, will grow to recognize the incredible strength in herself as she has endured some of the worst parts of life at a young age and is an extremely happy spunky kid despite of it.  He has been chiseling away at mine and Craig's character as well.  Thank you Lord. 

Yesterday was another one of the surgery hurdles, the first dressing change.  I was going to take pictures but it was a little tough for me to process, assist with changing dressings, comfort Sophie and there was nothing left of me to take pics.  I don't think I was ready to anyways.  I find that with each surgery there is a little shock at the realization that we never get as much as I want because I want to get it all! That she now has giant thick incisions in place of mole.  It all seems so obvious but you still get that bottom dropping out of your stomach feeling at first glance.  Yesterday I think bandage change was as hard for me as it was for Sophie.  I waited till I put her down for a nap and then I had myself a good cry.  I knew that  it wasn't just in my head when Craig went up to the medical supply place to get an alternative product and the woman who has been helping us for years came and begged Craig to bring the girls in soon and even remembered Gracie's name.  Then the man who had filled today's order came running over and said "When I saw the calculated length of the incisions on your little two year old's body, which is how we determine the quantity of supplies to give, I was shocked.  Bless your little girls heart"  I guess it really is a lot for such a little peanut.  I think it would be a lot for some of you to handle so I will spare you. I am praying that she heals quickly and that the Dr will pull the drains on Monday so that we can get back to normal living.  She is moving gingerly but we have been going without codeine for almost 24 hrs now so hopefully we are progressing right along. 

Each part of this surgery has been tangibly covered in prayer, we are definitely feeling it so thank you thank you so so much. We have received such a wide range of love; hospital visits, meals, gifts for the kids, video love, I could go on and on and on! Thank you. You always have a way of making such a difficult week so much easier. I am filled with gratitude.

Here is a couple of pics of my brave girl sitting so still at the beginning of her bandage change.  Some things are so much easier for her now that she can talk both at the hospital and here she is always careful to ask "Is this going to owwie me?" I felt bad because I knew this was so I just answered honestly that we were going to try really hard not to.  We didn't quite succeed when we got to the leg the tape was the worst part and she was so SO brave.  There were tears but there was candy corn in my pocket.  There was an instinct to flee but there were Grandma's hands to hold on to tightly.  There was a new nurse in our house inflicting pain on her but she was covered in beautiful sparkly jewelry that had her intrigued.  The final surgical hurdle is getting the drains out (praying for Monday!!!) and it is all smooth sailing and healing from there.  Again thank you so incredibly much for all your prayers.   I felt like we spent the last 4 days lying at the alter of grace and peace and God has mercifully lavished it upon us!!! Thanks!