Tired Momma

My sweet girl! I wasn't even going to do an update about tomorrows surgery because the people who know us best are already praying.  Honestly, I am worn out after nearly 8 years of asking for prayers and trying to explain what's going on this time.  Sophie has two expanders in right now.  One has failed in some way.  Although it's been in since February it is flat.  This is such a bummer but I moved on from being disappointed to "what happens next."  They literally are taking the busted one out and putting another back in and we have to try to puff it up as fast as possible to try to preserve whatever stretch we may have gotten from it before it failed.

Oh but that's not all... meanwhile she also has an expander in her leg.  It has had a sore spot on it for about a month.  But as long as it wasn't getting worse the Dr wanted to keep it in as long as possible. Especially now that we are starting over on the back.  However it's so big and uncomfortable, she is having a hard time dealing with it and if it doesn't come out tomorrow that will be in for months and months more and what if it can't last!  

So here is the deal tomorrow morning she goes into surgery for her 16th surgery in 7 years.  I'm not sure at this point if they will also be removing the leg expander which will be significantly more involved in terms of the procedure and the recovery.  And I have to keep my smile glued to my face and fake it till I make it. I can't let her see how tired I am of "all of this" and keep my cheerleader "this is what's best" mom outlook on the whole situation.  I'm just plain sick of it you guys.  And as her parents obviously we could decide to stop.  But that feels like a selfish decision.  And what do I do with that decision if she ends up getting melanoma! It's too awful to consider.  It's all too much sometimes.  Sometimes I just don't want to be brave anymore dangit.  So say a prayer for her.  Say a prayer for me.  Say a prayer for her surgeon.  Surgery is tomorrow before most people are awake in the summer haha! 7:30 am is start time so we will update you when we know more.  Thanks all

It's that time again...

We have a habit of having surgery in Feb so just keeping true to form here we go again....
The bible says "What has been is what will be, and what has been done is what will be done, and there is nothing new under the sun." Ecclesiastes 1:9 and that is how I am feeling, we have been through this a million times (16 or 17 surgeries on your child may as well be a million in my opinion!) and I feel like I have nothing new to say.   I don't feel like I can complain or tell you how much I hate doing this AGAIN or how much I need your prayers or how regardless I still have peace that ultimately God will carry us through. I've said it all before.  For those of you still listening or caring I know you will pray for us and our girl whatever comes with this next round.  Our spunky girl, known around our house now as "Cokie" as that is how Charlotte said her name when she was learning to talk, is having 2 tissue expanders placed next Friday (not sure of time so I will post on facebook the day before).  She is getting one in her leg and one in her back I believe. She isn't really nervous about surgery, like me I think she has grown rather apathetic to it, but she did say to me yesterday "Mom, what if all the kids at school laugh at me or tease me about my balloons or call me weird looking or stop playing with me." We had a talk about what has happened in the past and how that has NOT been our experience so far but that whatever happens Mom, Dad and her teacher would help her get through it.  Although compared to last year her teacher has not been the best about communicating with me on this.  She pretty much hasn't responded to any of my emails regarding Sophie's mole or surgery or how or if to discuss with kids at school.  Anyways that's it. I literally have nothing more to say about it.  Please pray for my attitude too I guess, haha! But mostly just pray for this precious face:

How can I not know the number!?

So Sophie is having surgery this Friday, surgery number.....? I don't remember!  My child has literally had so many surgeries I have lost count! And it may be partially because I have severe Mommy brain after just having my fourth kid but yeah I don't know this is like number 14 or 15? Something like that.  A lot.  Too many.  After 9 months of normal it is a little exhausting to be heading into three more surgeries, this one to remove scar, one in jan to put expanders in and then probably next fall to take them out.  I have enjoyed our break but I hope it wasn't a mistake to wait so long.  I feel like we will never get to the point where we say, hey we are done having surgeries on your mole.   She is kind of bumming this time too, not her usual extra positive self.  She doesn't want to miss out on the rest of swimming season and not be able to jump on the trampoline, her two favorite activities!  She also doesn't want to be different then the other kids, she says she hates how everyone is always asking her about surgeries. She doesn't want to have pain that she is old enough now to know will be there.  Probably the timing is ideal on this one though, she got to enjoy MOST of the summer carefree but now will have enough time to heal up before she starts 1st grade.  That is my hope anyway.

So what is happening this Friday, she has some mole and scars that have widened from all the pulling going up her sides and he is going to try to remove that. 

 This is what her sides currently look like. I am not exactly sure if he is doing both sides or just one side.  I had been under the impression this would be a "quick and easy" surgery.  No biggie. Turns out I was wrong. At the pre-op he said that he wanted to do things a little differently than the past because her incisions keep forming big scars.  He wants to use regular sutures instead of the dissolvable kind and he said that as such this will be a more intricate surgery, may take a lot longer and she may have restrictions on moving and swimming for awhile.  This morning she was asking me about surgery and her biggest worry was not being able to hold her little brother.  She is so smitten with him.   

 

I assured her that won't be one of her restrictions! So please be praying for Sophie this Friday, surgery is planned for 7:30 am. He said it would be a longer one.  That is a little intimidating because she has had many surgeries that were 4-6 hrs so for him to say that means...who knows!? This will be one of the only times my parents won't be able to keep us company in the waiting room too, they are so good at distracting us, we always somehow have a fabulous time together and they keep me from feeling too anxious while we wait. So be praying for Craig and I too I guess. We are still supposed to be able to come home that night though. And I am thankful we are the first surgery of the day so she won't have to wait too long on an empty stomach.  And I am thankful we fit this surgery in during my maternity leave so I don't have to stress about time off. See, still so much to be thankful for! But...

 

 Oh my sweet little Sophie.  I still sometimes catch myself looking at Charlotte and Jack's perfect blemish free torso and feel such a wistful tug on my heart that my Sophie has had to endure all of this.  I worry about her someday looking at her body and feeling brokenhearted too. And even though we have been through this literally too many times to count (I still can't believe I don't know the number!) every time it is horrible and awful to watch your baby get loopy on meds as they start to put her under, to have them wheel your kid away from you to be cut open and watch your big strong husband cry, to sit for HOURS wondering how it's going, to see them struggling in recovery feeling painful and disoriented, to see her swollen post-op face and have her cry when they take the IV out, to hear her groggy throat recover from hours of intubation, to go through days of watching her wince when she moves and see her sad face when others get to play and she doesn't.  It is so unimaginably hard.  Every time. But I'm not supposed to worry...

 

Prayer instead, always.  Just pray don't worry.  That should be my motto.  I should get it tattooed on my forehead.  Just pray.  I feel small.  I feel ill-equipped.  I feel tired.  I feel broken-hearted.  I feel so so alone in all of this.   But then I pray. And the answer always comes.  God is BIG.  God is well equipped.  God is energized.  God is whole-hearted.  God is with me...in ALL of THIS!   So I will pray.  Will you pray with me?

A people undeserving

My head was all swirly with emotion today.  I don't know why but I felt extra weary, almost like I was counting on a bad outcome and I didn't want to have to go through the whole thing, Sophie to have to really, and still have a bad outcome.  I kind of felt like I wanted to stomp my foot like a two year old and shout "It's not fair".  And then our faithful prayer warriors, the Kerkstras came over and reminded me that we have a High Priest King Jesus who interceeds for us! Do you sit and ponder what that means!!! That is so powerful.  And we have the Holy Spirit, the "Comforter" to bring peace to our spirits.  Most of us were crying by the time we were done praying, and the raw emotional edges of my demeanor were coming undone.  And as always God showed up for us in many ways today, Sophie wasn't loving the fasting thing and we thought at one point surgery was getting pushed back an hour and then, just like that, they came in and got her earlier than we thought! Albeit a very long and late surgery the Dr is pleased with how much of the mole he removed, pleased with the blood flow to the new locations, and thinks it was a successful round of surgery.  Prayers answered.   I still feel raw.  And we decided it best if only one of us stayed the night so I came home tonight.  It is never easy to watch your child go through a major painful procedure like a surgery.  Ha! That is the understatement of the year.  It's pure torture, your worst nightmare.  She is still so small. Right now she literally has an incision ALL THE WAY AROUND her entire torso.  And he doesn't want her bending or twisting for the next few weeks, not that she will want to anyways because it will likely be too painful.  She will have to stay inside from recess and sit out from gym for the next month.  And my little Cartwheel Queen will have to keep her feet on the ground for awhile.  Not so fun when you are six.  And I will pass meds, and dress her wounds, and help her relearn how to move when it hurts so bad....like we have done over a dozen times before.  And every second, every single second of it, a burning deep in my core will yearn to take this cross away from her....but I can't.   And that is my cross.  So what do I do with these feelings.....besides whine to you all about them! Besides placing them at the foot of the cross again and again begging for mercy and grace... Ok so I had to leave tonight, that was hard.  I got to my car in that cold dark parking garage feeling empty and drained, I started the engine.  We had been jamming to Gold, Sophie's favorite song, as we were pulling in and it just flipped over to the next song in our praise playlist...

To know you gave, the world your only Son for us
To know your name, to live within the Saviours love
And he took my place, knowing he'd be crucified
And you loved, you loved a people undeserving

Ah there's the rub.   When Carl read to me this morning that we have a High Priest who understands.....I have to hand her over to be cut....he handed his son over to be crucified.....and he did it for me!!! That is a realization to be praised! That is why I do this blog.  I started off doing it to update you.  That is too clinical.  It is not enough for me to say, when I left the hospital Sophie was waking up asking for food and water and asking to watch the movie Brave. That's great news true but I write these posts to tell you about my Comforter the Holy Spirit, my High Priest the King Jesus, and my Great and Mighty God.  Through this he has made me proclaim him time and time again, and I will not quit! After I finished that song I had to switch it to my favorite song, Oceans:

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
Through choosing me to be Sophie's mom, God has taken me WAY beyond the borders of my trust and my faith is stronger every time and I choose to be thankful even in this! Praise God for his faithfulness once again, thank you for your prayers.  By lifting me up you become part of her beautiful story! I will leave you with this, before I left I asked her to smile, she was very sleepy and she gave me this sweet picture!

Getting comfortable

I was passing on my blog information for a new parent trying to decide if they wanted to proceed with surgery and I realized how few and far between my posts have been. I was reflecting on why that is, I believe, mostly because we were comfortable, nothing to report.  Sophie had an appt with her surgeon this morning and we were thrown for another loop.  Not our first loop, we have been through many many loops over the last few years, in fact I have started to expect loops, I actually feel comfortable with the loops.  So in all my ponderings this morning I realized that we have become comfortable in our difficulty.  After nearly 6 years of this, it all seems so second nature; the surgeries, the procedures, the shots and yes even the loops.  I remember last summer after her abdomen literally ripped open and the initial shock from that loop wore off, I actually cracked up laughing while praying to God about that one because I literally thought "What next?" Flipped ports, torn incisions, black dying incisions, infections, popped balloons...small problems inside our big big difficulty.  And I am realizing we are comfortable.  Maybe too comfortable.

When you are in the midst of a storm, you bolster your strength, double your prayers and ride it through trusting in God.   Our "storm" is never ending (at least on the grand scheme it feels that way) and I don't have the luxury to allow myself to look forward to the sunshine peeking through at the other side.  I haven't ever felt able to look ahead, so I kept  my head down, and made myself comfortable.  I was trying to give a friend a little "what to expect" advice before her daughters surgery and I realized the surgeries don't even make me uncomfortable any more.  Like I'm numb to the idea of my child having surgery?  I don't like this feeling that I am comfortable in my difficulty.  Our pastor has been speaking on pride the last few weeks.  My comfortableness I believe is a form of pride.  I am not worried about surgeries because "I am an expert at this I don't need to worry, I know what to expect."  We disergarded the surgeons advice early on in this round and injected more than we were supposed to because  "I am an expert at this, we have been through this literally a dozen times, we know what we are doing."  We failed to keep track of how much we were injecting this time because  "I am an expert at this, it will all work out fine like it has in the past."   We have become comfortable in our difficulty.  We have stripped God of his title Savior in this situation because we pridefully became skilled at the juggling that we didn't  think we needed to trouble him with helping us.  And here comes another loop...

It wasn't till I left his office this morning that I could hear clearly all the things the surgeon wasn't saying.  He was not his usual "looks great, going great, everything is great" self.  There seemed a very strong "don't freak this parent out because parents always freak out" kind of vibe.  He tried to casually tell me that I should "definitely stop doing injections" and actually repeated that several times in several ways.  Then he told me to watch her expander for signs it is leaking.  Her back expander is soft. Because I have been too "comfortable" to pay attention to whether it was firm and is now soft (that would be a bad thing) I don't have enough information to gauge the situation.  But basically there is a chance that the back balloon is leaking. During my debriefing with Craig he asked me for "worst case scenario" - it's not great.  If it's leaking we rush into surgery soon (like next week) and try to salvage what we can but it more or less equates to two surgeries and 8 months....for nothing....or least very little mole removal...and that's all if everything goes well and there are no other loops on the other side of surgery.  Yeah, not a fan of worst case scenario.

If the expander seems to be holding it's own, surgery will probably be near Christmas which is much what I was expecting/hoping. Please pray for us.  I am grateful for yet another loop.  Especially this one, because it woke me up to how comfortable I had gotten.  People are frequently telling me how "brave" I am....I'm not brave.  I am probably the most unbrave person I know.  But I had allowed pride to creep in and make me feel like some Mommy superhero and I had gotten comfortable in my difficulty.  I am not a superhero.  God is the brave parent.  I am humbled by his example.  Please forgive me my pride and help me pray we are not traveling down the path of worst case scenario.  A friend recently told me her four year old frequently prays "for Sophie's balloons not to pop"....please Lord, forgive me my pride and my "comfortableness" and please grant Kara's prayer!!!

Unfrozen

This winter was all about Frozen; the smash hit Disney movie, the feet and feet of snow.... But now the signs of Spring are all around us, and as the ground becomes unfrozen we need to unfreeze time and begin again with another round of surgeries for Sophie.

 

 I am awesome about being brave. About acting like it doesn't phase me.  We have been here before 2, 3, 7, 10, 11 times before.  It's so exhausting.  And we haven't even begun.  I know we don't HAVE to do it again.  We, her parents, could decide to stop.  But then I would be making the selfish decision.  It's hard for me.  It's emotional for me.  I don't want to do it, so I could stop.  But isn't part of my parental sacrifice making the tough decisions?  Sophie is so sweet, she told my mom the other day, "I'm not too worried about surgery, but my Mom is, she is really worried about it." Guess I am not as good as I thought about acting brave and pretending it doesn't phase me.  The hard truth is that while we have removed over half of her original nevus the half that remains gets harder and harder to get to.  The issues we had with the last surgery dealing with the blood supply get worse each time, it is hard for the surgeon to feed blood down to the new skin when there is a maze of scars along her body.  I would have thought by now I would be all cried out about this issue.  But a new batch of tears can always sting your eyes when you least expect it.  I could write pages upon pages of how God is so good and has delivered us time and time again through these hard times and yet the ache is still there.  "I know who goes before me, I know who stands behind, the God of angel armies, is always by my side." I know this.  I do.  Then why the anxiousness?  I recently had the chance to briefly visit with a couple who had a profound effect on me in my formative years, my youth pastor and his wife, having only seem them 2-3 times in the last 20 years (wow, that makes me feel old!) it made me reflect on the time growing up when they made such a difference in my life.  It made me think about how every experience shapes us.  How every choice we make directs our path.  How our good and gracious God gives us the freedom to make those choices, even the ones we may deem later, mistakes.  I know there are people far braver than I.  Mothers whose babies have cancer.  Mothers who can't feed their children.  Mothers who don't know in a real and personal way the God of love upon whom they can cling to in their desperate moments.  My heart aches for them like it does for my Sophie.  I had just meant to pass along the surgery details and ask for prayer just as I have a dozen other times....I guess my heart had more to say.  Her surgery is a week from today, Friday April 18 at approx 9:30 am.  Next Friday is also Good Friday.  It is comforting to remember, "For we do not have a high priest who is unable to empathize with our weakness, 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 4:15-16.  Even Jesus himself, our high priest, tempted with doubts and fears in the Garden of Gethsemane cried out for God to "take this cup away from him" but in the very next breath, in full submission, "not my will, but yours be done." Is that not my cry?  To allow God to have his will worked out in our lives.  My faith tells me that the surgery date is not a coincidence.  It is a loving reminder of a big God, God the Father, who wants me to remember, HE KNOWS.  He sent His son to die, for me.  He knows.  Whenever I used to cry when I was little, without even saying what was wrong my Mom would pull me into her lap for an embrace and murmur, "Momma knows."  Now the God of the universe, wraps me in His loving arms and softly whispers "Papa, Abba, knows."  As always we covet your prayers, before, during and after. Thank you.

Having a Hebrews moment....

We have had a very "eventful" month dare I say year here at our house.  I was feeling in a very reflective mood and thought now was as good of time as ever to shoot out a Sophie update and combine it with a general family update.  Today I was feeling convicted to make sure I shared with anyone and everyone how gracious God has been to our family recently.  After a year that was very hard on us (last year) with my husbands back injury and subsequent surgery it was such a joyous thought to be expanding our family and Sophie especially is overjoyed that it is finally her turn to be a big sister.  Now admittedly I am a pretty miserable pregnant person, it takes a lot of encouragement for me to make it through the gamut of symptoms through the course of nine months, which can be taxing on my family who is wondering "why is my mom always tired, sick, etc." and God has carried us through these long LONG months and here we are 6 days from my due date. 

One short month ago I decided spur of the moment to have a garage sale and that same week we took a look at our finances and with the council of my dad and a builder decided spontaneously to put our house up for sale.  I mean because in the last month of a pregnancy who doesn't think, "Gee I would really like to do house showings and clean the house non-stop!" I entered this season with so much anxiety, which is already something so difficult for me.  So with worry over the house selling, worrying about the imminent arrival of "Three" as she is affectionately being referred to, worry over Sophie's upcoming surgery, things began to pile up.  May's calendar was literally exploding when I looked at it and this was after I got through our church pageant which was quite time consuming but magnificently rewarding.  What if the baby comes early, what happens to ALL these things on my schedule?? I can't tell you how I have cried to the heavens in the last month, begging God to work things out according to....well let's face it MY plan.  I hope I am not the only one who tells God what we would really like to happen and plead and beg him to align His will with ours.  And all the while my husband would say in an unwavering voice "Honey it's going to be fine." Seriously the word 'fine' makes my skin crawl at this moment.  I don't understand why I am like this other than to say I am human.  I have had God care for my concerns time and time and time and time again, I could fill a book with my own personal answered prayers.  And sometimes it takes SO MUCH longer than we desire which is SO MUCH more stressful and harder to trust.  But he always upholds us in his righteous hand. I am so thankful for such a loving heavenly father, who forgives my trust issues and cares for us so dearly.

I will spare you my long winded details of how everything has played out but tomorrow is the last thing on the calendar before the baby that I wanted to make it through, my daughters choir concert.  Yesterday we signed a sales agreement with a buyer for our house.  We have a date for Sophie's next surgery, Friday June 28, which will be the day after we move out of our house and move in with my parents for a bit while our new house begins to be built.  God has answered my prayers one after another....

Honestly I think my anxiety stems from insecurity, "what if I don't deserve good things to happen to me?" For years I have worked to demonstrate faith and gratefulness in my situation whatever it is and somehow "prove" to God that even when your answers are 'no' or 'wait' I will still love you and praise you.  And through every storm we have battled when I look back at the results I see his hand.  Even through thyroid cancer, losing my voice, Sophie's birth and ALL her surgeries and wounds, through NOT selling our house last time we tried, through other storms big and small....I can see his provision, his loving-kindness, his care through it all.  This morning I read Hebrews 11 which opens famously with "Now faith is confidence in what we hope for and assurance about what we do not see" and goes on to chronicle the bibles most famous heroes of courageous faith.  I realized that my husband's "fine" is exactly that....faith.  Unwavering belief that whatever the outcome, God will be good and receive glory.  My method of getting to that same conclusion is always so much messier!  But I do believe I feel it deeply and my desire is to be transparent about my journey with others to give God the glory he is due.  I want you, the people who love and pray for our family, to be assured whatever trials you are facing, HE IS HERE!! God is with you, even when you can't see, hear or feel him.  When you are desperately scanning the horizon to see how it will ever work out, how can he make beautiful things out of our messy messy clay lives.  Because he is awesome, and powerful, and perfect.  You need not do more than glance over your shoulders at the answers of the past to know how PRESENT he is in your life.  Thank you all for your prayers and encouragement you have given me over the last year and a half.  We feel so incredibly blessed by such a good and gracious God.  I can't wait to post again soon with pics of our newest Travis.  Blessings to you all.

PS I have decided to implement a "To hold the baby you need to pack or move something in our house" rule.  So basically I plan to use our new child as currency to help with our move, haha.  Good thing I know lots of you can't resist a perfectly adorable baby!

Phase 3 update

Sigh.  4 years, 10 surgeries and I am still getting thrown for a loop, not that I am that surprised by the "loops" any more and there is a significant difference in how we handle them now but the changing nature of this beast always seems to surprise me.  So it is not going well.  Wish I could say it was.  It is becoming more and more likely that Sophie has developed an allergy to the numbing cream that may be making it more painful.  So it would appear our "magic lotion" has lost it's magic and it's very possible that we may have to endure the next 8 months of shots without it.  With it she gets extremely red and painful on her ports every time and cries and screams every time we try to do shots.  I only hope that without it, if the allergy is indeed causing pain that she will calm down and allow the shots to take place without the cream.  I am a little sad and weepy today in the face of this new roadblock but I was pondering the whole thing and came to a few different realizations.  I have really come a long way in the last 4 years in strength and faith.  At the beginning of this journey I wouldn't have endured over a month of difficult injections before telling you all that we were struggling.  This time I have become trained at being her advocate and making decisions for her that I actually decided to spread the injections out and add more each time and treat with cortisone in between.  I have been relatively calm about this whole situation, much more than I would have been in the past, I guess a sign I am growing up.  However in that calm I wasn't as quick to ask for prayer.  Feeling a little like "we can figure this problem out on our own." I definitely don't want to get so confident that I am trusting in my own strength and not relying on God's strength bolstered by the prayers of believers.  I have been humbled continuously over the years by the prayers of others.

Recently I was sent a picture that features a woman's prayer chapel set up in her home for her daily prayers and placed in the corner of her stained glass window is a picture of my daughter whom she prays for every day.  That breaks my heart with gratitude for the love from others.  This is a woman I have met a few times in my life, most of them back when I was little like my daughter yet the fact that Sophie is daily in her prayers is so touching.  I remember the first three years of Sophie's life she was listed on the prayer request list in our church bulletin, there were many weeks when we were between surgeries or things were going just fine and I would actually feel guilty to see her name there, as if the prayers weren't needed or important.  Of course I love my child and pray for her fervently not just about her medical issues but her happiness, salvation, her heart as I pray for my first born as well.  But when others care for your child and pray for them with you it is extra special.  I guess I just need to keep being thankful and keep asking as needed because those prayers have been answered one after another over the years. In the tradition of Hebrews I would like to revisit some of those wonderful answers if you will indulge me:
1. Diagnosis soon after her birth
2. A wonderful specialist living right in our town
3. 10 successful surgeries without complications
4. A couple that prays with us and being covered with the Lord's peace through each of those surgeries
5. A happy healthy little girl who has been known to sing praises to God even when on our way to the hospital and actually asks to have surgery
6.  A medical supply consultant that has prayed for my daughter and provided us with excellent service
7.  Several in home nurses over the years that have taken the pressure of bandage changes off me
8.  Phenomenal insurance that covers nearly everything including supplies being delivered to our house
9.  A pharmacist praying with my husband in early days when he was scared and discouraged
10. A church in Arkansas sending us a handmade prayer quilt that they prayed for us while making
11. A section of skin that was turning and black and looked like it was dying come back to life
12. An balloon that was questionably infected moving up surgery a few weeks early but timing working out well.
13. A balloon that leaked only 5 days before surgery so not too much progress was lost
14.  A surgeon so helpful and accessible that he has given us his private number and talked us through various issues like flipped ports over the years
15. Discovering emla cream when Sophie was afraid of her shots.
16. Three full rounds of home injections with very little crying.
17.  Emails, cards, prayers and even pics like mentioned above always coming just when I needed encouragement like manna from heaven knowing that you the people of God are standing with us during this long battle.

The last one is more like 1000 rolled into one.  I could go on and on.  I read this morning in Jesus Calling by Sarah Young that when "adversity strikes and you thank me anyway, you trust in my Sovereignty is a showpiece in invisible realms" so I did not want to call on your prayers one more time without taking a moment to thank you and primarily God for the answers we have received so faithfully.  I wait excitedly to see how he can take this new situation of an allergy and turn it into another answer of his faithfulness to his glory.  Please pray with us again and be encouraged by all the fruit for your previous prayers!

Phase 3

I just got off the phone with the specialty pharmacy that delivers our medical supplies to us (I don't think I will EVER get over how awesome it is that they deliver them to us for free!). What this means is that it is time to start phase 3 already.  Tuesday is three weeks from surgery and we are to begin injections every other day at that point. 

Phase 2 went really well, she only needed meds for about 5 days or so and the day after surgery she insisted on wearing a skirt, she was ready to go! 

This was Thanksgiving morning (48hrs post op!) she was marching along with the marching bands in the parade.

 

So although she is doing very well she does have a little bit of struggles with her port placements this time.  For those of you unfamiliar the port looks a bit like a gumdrop under the skin, it is a dome that we do the injections into that is a little ways away from the actual expander and connected by a tube.  So the dome part is a material that is injectable with the needle and the flat bottom is metal so you don't accidentally poke through.  We have had trouble in the past with the ports flipping over, not too much maybe 5-6 times but it's rather unpleasant for Sophie, she screams bloody murder while you are trying to remain composed and flip it back over under her skin. So that means, we would like to avoid doing that ever again if at all possible.  So we thought the best solution would be to put the port against something more firm which would hopefully deter flipping and we chose to put them against her ribs.  The are both on her back just behind her armpits and 2.5 weeks after surgery they are still very painful, if you bump them, try to pick her up under her armpits or even sometimes she is just sitting and complaining that they are very sore.  I would imagine that having a metal dome under the skin is very sore but I was hoping by now she would be getting used to it.  It's possible we will spend the whole 7-8 months with them being sore and sensitive.  Please join me in praying that this gets easier for her to deal with.

So as we embark on phase 3 we have a little residual pain from these ports that we are dealing with.  She saw the injection supplies sitting out from when we had been taking inventory to order.  She looked at them for a minute and then said "Are you going to give me shots?" I reassured her that even though we did have to do that again that we would make sure we used the magic lotion (Emla numbing cream) so that she didn't have any pain and that she would get her M&M's for being brave.  She kind of shrugged and said "Okay!" so we seem to be doing good in terms of anxiety.  Please pray this keeps up and that as I reassured her the injections will go OK with minimal pain.  And just Craig and my sanity.  This doesn't maybe sound like much but it is a very big commitment.  We get the cream on and covered with Press and Seal (yup Sophie is leftovers!) and then we have to wait 2 hrs - too early and it hasn't kicked in, too late and it has worn off, for us 2 hrs is the magic number - and then we do the shots which is really an "all hands on deck" situation and we need to get back into a rhythm for this.  And we have to do this EVERY other day.  Towards the end I literally throw a party on every NON-shot day because it is kind of exhausting performing this elaborate medical ritual every other day.

Finally I would like to end with a cute anectdote: The other day Sophie pulled up her shirt and shouted "Where did my belly button go!?" I know I had told her before surgery that she would be losing it but I guess she was still surprised.  Luckily I quickly followed up my "it's gone" explanation with a tickle and a "but your tickle spot still works" and we forgot the temporary alarm.  Well today we read one of our library books and I received a blessing from God in the form of Pete the Cat.  We love the Pete the Cat books! He is hilarious and they all come with a free song. 

 

 

Here is a preview but as the book goes on Pete keeps losing buttons and in the end he looks at his belly button and is still mellow because he had but he reiterates several times in the end that "Buttons Come and Buttons Go" but it's important to keep rocking along and singing your groovy song.  I saw that there was a new Pete book and the library and I snatched it up but didn't ever think that it would be an answer to prayer! Our new motto: Buttons Come and Buttons Go.   Sort of reminds of another wise old "Cool Cat" Job, "The Lord gave, and the Lord hath taken away; blessed be the name of the Lord.” Job 1:21 Thank you for praying for us! We are held in His hands sustained by these prayers!

Phase 2

 Every one of Sophie's surgeries has three phases.  Phase 1: the actual surgery Phase 2: the immediate post-op recovery and Phase 3: the long term after care in some cases involving the filling of expanders or wound/scar care.   Yesterdays surgery Phase 1 went amazingly well.  As always we were carried along by your prayers.  Although the surgery was quite long she woke up easily and was quite thirsty, as it may have turned out maybe a little too thirsty as perhaps all her beverages made her get sick later.  We were also relieved and blessed to come home and all sleep in our own beds.  So we are on to Phase 2 which the main goal is to get her pain under control.  She is very sore, especially under one of her ports that he had to put just behind her left armpit, she hasn't had anything in that area before which probably makes it more sensitive.  So she isn't moving around much today and we are just focusing on getting that pain under control.  We invite you to praise the Lord with us for his mercies carrying us through Phase 1 and ask for your continued prayers in bringing us through Phase 2.  The girl who was excited for surgery may have changed her tune this morning declaring, "I don't ever want to go to the hospital again." I pray that next time we have to go to the hospital that sentiment is a distant memory.  She is really brave and sweet.  I am humbled by all your prayers and support. 

Getting hugs from Grandpa and Momma after surgery

 

 

Very sleepy, heading home, Mom and Dad are relieved!

 

 

Very painful this morning, she was crying as she was sitting here and afraid to move

 

 

Finally we found a comfortable position.  We may need to spend the day right here....

 

 

Thanks for reading and especially for praying!

Thanksgiving

Just got "the call" - the pre-procedure planning phone calls that mean, it's almost time.  In just a few days we go in for Sophie's next surgery, her 11th.  It's Tuesday morning at 8:10 am. She is healthy right now (so please no one get her sick this weekend!) and her lungs are clear which is excellent.  She is having two expanders placed and hopefully the recovery will be quick and easy.  Then we can all enjoy a nice long holiday weekend home with family.  That is our prayer.  There is something comforting in having been through this so many times.  I always seem cool calm and collected.  I believe truly that God gives me strength, to be the Mom I need to be. That doesn't mean that every time we go through this it doesn't seem like a really big deal to us, it does.  She is our baby girl and this is always always hard for me and her Daddy.  Obviously being pregnant I am not operating at my best these days, esp since we have to be at the hospital at 6:30 am yikes! I will need some prayers specifically in this area, esp spending the night there too. I am very grateful for all the prayers. Much to be thankful for this year.    "Give thanks to the Lord, for he is good; his love endures forever." Psalm 107:1

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....