Archive for December, 2013

  • Lainey Lou is no Longer Two

    Date: 2013.12.30 | Category: Lainey Rae, Photos

    This was one of the first pictures we received of Lainey or Lan Lan as they called her.

    Lainey - we were told she has a sweet, bright, and welcoming spirit and loves to cuddle.

    Lainey – we were told she has a sweet, bright, and welcoming spirit and loves to cuddle.

    Her name has evolved over the last 7 months.  She gets called Lan Lan, Lainey Lou (even though her name is Lainey Rae), Lambie, and Lainey Lambchop.  Her animal has become Lambie from Doc McStuffins.  Which works out pretty good because everyone in our house loves the Doc McStuffins song, “I feel Better” and on the show, Lambie is so very cuddly.

    Lainey knows how to cuddle. Lainey loves to lay her head on your shoulder.  When we were in China, that was the only place that brought her comfort.

    China 2013 037

    We have come a long way since those days in China.  I have spoken often about how trying those days were.  Lainey was very happy at New Hope.  We sponsored her and had many pictures and reports of how happy she was.  She had individualized care and people who knew her well.  I do believe she was happy there.  The problem began when she was transferred back to the orphanage two weeks before we arrived in China.  She had a 14+ hour train ride.  She was with people she didn’t know and they didn’t know her triggers. If Lainey starts throwing a tantrum and you don’t stop it within the first minute, it turns into a full blown rage. I’m sure she was left alone to rage quite often.  By the time we got her she was a mess.  She was raging and angry and scared and in constant meltdown mode.  There was no eye contact.  She was non-verbal.  She couldn’t calm herself at all.

    Within just a few weeks at home, things got better.  We knew what was going to upset her.  She was smiling and playing and happy.  She still loves to cuddle on your shoulder.

    20130821-185952.jpg

    She especially loves daddy.  Daddy has an office in the basement.  We have a gate at the top of the basement stairs.  As soon as she hears that gate click, she runs to her daddy and lays her head on his shoulder.  It’s her very favorite place to be.

    photo(3)

    Now we know her triggers well.  We can head off most problems.  Instead of being upset most of the time, she is rarely upset.  She has purposeful play.  She is trying to vocalize.  She has said, “Ma, hi, Gee (Grace), Dad, and yeah.”   You should have seen her daddy’s face the first time she said, “Hi Dad!” so clearly.   She plays around the kids and wants to be part of the play even though she really doesn’t understand how to play with them.  She loves to run.  She loves to laugh.  She loves the wind blowing in her face.  She loves water and will play in any amount of water anywhere.  She runs to the backdoor gate whenever anyone comes home.   She puts her arms up to be picked up.

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    Her PKU has been relatively easy to control.  She doesn’t really want other foods so we have been lucky that way.  She loves rice cereal, baby food – squash, green beans, sweet potatoes, and pears.  She does ok with her weekly finger stick.  We have been staying within the range most of the time.

    We still have a ways to go with the sleep issues.  She routinely wakes up every 90 minutes to 2 hours.  Although, she slept for 4 hours in a row the other day.  IT.WAS.AMAZING!!!!  We still have to take shifts and big sister Cassie routinely cares for her.  I’m not sure what I would do without big sisters help.  Lainey rarely rages, except at night, when she wakes up with what seems to be night terrors.  Her seizures are much more controlled now.  It took forever to get into see the neurologist.  When we finally did, they weren’t sure they agreed with what Dan thought were short seizures but they decided to schedule a video EEG to check. No one wanted to put her on medication until we knew for sure what was going on.  It took a while to get the appointment for the VEEG in the hospital.

    I was so worried they wouldn’t be able to do the EEG.  Lainey does not sit still and she certainly doesn’t like things on her head.   It took an hour of holding her down to get the leads on.  She fought so hard that she slept for an hour after the leads were attached – so we got a great baseline EEG.  Then she had 6 seizures in the next hour that we saw and there were many more subclinical ones that they caught.  We didn’t end up staying over night because she had so many seizures in that hour that they got a good reading.  The good thing about her seizures are they are very short lasting and they don’t seem to affect her in any way afterwards, but I still can’t imagine having ten or more seizures every hour and functioning very well. Poor baby.  It was no wonder she was having such a hard time.

    lainey

    We started her on medication and have seen definite improvements.  She is calmer.  She is more focused.  As Dr. Noble says, “She has great potential for making wonderful strides in the next couple years.”  We were thrilled.  The truth is she will never be “normal”, but she has come so far already.

    I remember my fear in China of what would happen to the family when we got home.  Would we be able to handle the tantrums and no sleep?  Would it even make a difference?  Would Lainey ever be happy?  Would she understand love and family?

    Well, everyone loves Lainey.  She understands family and love.  She plays and dances and laughs and sings.  I have no clue what the future holds for her but the last 7 months have been pretty amazing.  She’s made such wonderful strides and there is real hope for her to communicate and get better.  All in all a pretty good year.  Praying next year brings even more strides forward for our little girl.

    Happy birthday little Lambie.

     

     

     

     

     

     

  • My mama…

    Date: 2013.12.29 | Category: Family Life

    My mama was everything good and generous and giving. My mama has been my lifelong best friend.  Her life wasn’t always easy.  She could look stern but she would give you the shirt off her back if you asked for it.  She would rather give away her last dollar than keep it for herself.  She was never wealthy by earthly standards, but she gave generously.  She loved to make people smile.  She believed in God and His power with her whole heart.  She sang silly songs.  Would use the word “jellyfish” if she wanted to cuss.  You knew how mad she was by how many adjectives she used to describe the jellyfish.  She grew up hearing silly superstitions and even though she didn’t believe them, she would still spout them every once in a while and make us laugh. She said things like “I knew you were thinking about me because my nose was itching or I knew today was going to be lucky because my hand itched.”

    mom & mema

    She loved her grandchildren and was at every event she could be at.  She was always so proud of all of them.  She sat through countless recitals sometimes twice in one day.  She went to ballgames, Awana meets, school programs of any type.

    She especially loved pageants and watching Miss America with Cassie.  When Cassie was about 4, Mom asked me if she could put Cassie in a local pageant.  I remember laughing because Cassie wouldn’t leave my side.  Cassie was a mama’s girl.  There was no way that girl would walk across a stage. All the little girls were walking across the stage with their moms.  We were last in line to walk across the stage.  We got to the stairs and Cassie said, “Mama, I got this.  You go stand by nana.”  And off she went, waving her hands like she was the real Miss America.  I will never forget the tears in my mom’s eyes as Cassie was crowned.  You would have thought she won the Miss America pageant itself.   As the years went by, Cassie decided to do another local pageant and of course, my mom was there.  This is one of my favorite pictures from that time.

    Miss Spring Creek 2011 011

    She made wedding flowers for barely more than cost and I would ask her why.  She said, “Because it makes me feel good to be part of someone’s happy day.  I don’t want them to have to worry about the cost.”  She did my wedding flowers and Cassie dreamed of the day when she would do hers.

    We did crafts together for years, my mom, my mother-in-law Linda, Linda’s sister Kay, and me.  We had a great time.  We started doing crafts years and years ago.  When we first started out, it was because I needed money if I were to ever afford Christmas presents for my children.  As the years went by, I didn’t need it but they could use a little help with their Christmas funds.  During the last 11 years, we have mainly been doing the sale at the Iowa State Fairgrounds every Christmas holiday.  We have our huge booth in the corner.  We look forward to all the people that come back year after year and buy from us.  No matter what I did I couldn’t get Linda or my mom to raise their prices.  They loved passing on their bargains and loved to make people smile so they would just say, “We are making a profit.  It’s ok.”  During the sale, my mom would constantly get up and give people bags to carry their purchases.  It didn’t matter if they had purchased from us or not.  If she saw someone carrying a big coat or items they purchased somewhere else without a handle, she was out of her seat, handing them a bag, and wishing them a Merry Christmas.  That was my mom.

    This is how the booth looked when we set up Friday afternoon.

    crafts

    That weekend was a Christmas wonderland.  The kids came and helped us set up.  Family helped bring the crafts down to Des Moines and we would all have the most fun.  We ate cookies by the bucketful.  We laughed.  We celebrated making a profit.  We would talk about what next year would bring. We stayed up late making more crafts and laughing.  The weekend was always a success.  We would talk about all the bargains we would find after Christmas was over.

    And this is how it looked on Sunday afternoon.

    crafts 1

    I have many, many wonderful memories of my mom.  After Christmas sales will never, ever be the same.  I miss hearing her call a couple times a day.  I miss her phone messages that would say, “It’s just mom!”.  No matter how many times I told her my phone says I have a missed call and you don’t need to leave a message, that message was always there. Oh, how I miss it now.  I wish I had saved just one.

    I hate that the littles will never run with glee to the door when she arrives like my other children did.  I hate that they won’t know that she was called the shoe fairy by Cassie.  Mom always found the best bargains for shoes and Cassie, Hope and Grace were always well outfitted.  I hate that they won’t have her sitting in the audience cheering them on too.  I hate that she won’t be bringing them a champagne cake for their birthday. And most of all, I hate that Cassie hurts because her dreams of what her wedding would one day be like are never to be.  Cassie used to dream of driving all over looking for her dress with me, Linda, Mom and Kay.  Mom and Kay are both gone now.   Cassie and nana would discuss wedding flower colors when she was just a little girl.  They would talk about twinkling lights and all the tulle my mom was going to place everywhere.  Cassie and Nana had big plans.  They had big plans on a budget.

    My mom was the best bargain shopper of all.  Every year we did Operation Christmas Child boxes. All year long she would pick up sale items – shirts, colors, hairbows, you name it, she found it.  She would shop the clearance sales after school started and buy as many of those little plastic pencil boxes that she could find.  Last fall she picked up every one that Wal-Mart had.  She just threw all that she found for 25 cents in the cart and didn’t count.  We usually did 42 boxes.  7 of each of the six age groups.  The year before we had done 77 and she thought that was wonderful.  This year she wanted to do more.  We actually wrapped boxes and filled them this May before I left for China.  We knew I would be very busy when we got home.  We ended up with 217.  She was thrilled.

    presents

    Every year we went to the Women of Faith conference.  Each year our group grew.  This was the first year in over 10 years that I had to miss.  They are great weekends spent with laughter and tears.  We have a slumber party and we all laugh well into the night.  This year Evie was in the hospital after having heart surgery and I didn’t feel right leaving her so Cassie took over.  Cassie drove the bus and took everyone to the conference.  Mom was not feeling well, but she still went.  She liked being with her friends and sharing her faith.

    women of faith

    There are so many things I can say about my mom, but the thing that touched my heart the most was she loved her grandchildren and she never treated the ones we have adopted any different than the ones I gave birth too.  I have heard many, many stories from others that this isn’t always the case.  That was what made this whole summer so hard.  Mom had a perforated ulcer the night we were to head back from China.  She was here with Zach, taking care of the other kids while Dan, Cassie, Linda and I were in China.  She was so sick.  They rushed her into surgery.  She came out of surgery, still not looking like herself.  Later on it was discovered that she had had a massive heart attack somewhere before or during the surgery.  She went into congestive heart failure and ended back up in the hospital.  She went home to recover hoping to get well enough to have her quadruple bypass.  She said, “I don’t want to live like this.  I want to take the chance on surgery.  If God has more plans for me, I will live and if not, I will get to see Kyle again.”  She had her surgery and it was going well. She was set to be discharged the next morning and that night she started having blood pressure issues so they took her back to the ICU.  We no more than walked her down to the ICU and she coded.

    ICU

    The code put her kidneys in failure, shocked her liver, and put a strain on her heart.  She spent 45 days in the ICU.  She fought a gallant battle.  She finally got out of the hospital and was sent to skilled nursing care.  She was happy to be in her home town but her body was just giving out.  She started to sleep all day.  She was confused at times.  The last Tuesday that I went home to be with her she didn’t know who I was and I was heartbroken.  We knew that the end was close because she refused to eat or drink any more.  She just wanted to be “safe and at home” she would say.  We knew what home meant.  She wasn’t talking about a building.  We decided to take her hospice where we could all be with her.

    True to my mom’s selfless, caring way, she passed away on Christmas Eve at 5 p.m. allowing me to go home and spend Christmas with all her new grandkids, four of which had never experienced all that Christmas is.  One of the hardest parts this past summer is that my mom really didn’t get to know her four new grandchildren.  She only saw them a couple of times because she was just too sick.

    Christmas 2013

    One of the biggest gifts my mom gave my children and me was being friends with my mother-in-law.   They came to every function together.  They came down for shopping days where we had to eat at Red Lobster or HuHot.  We took trips together and had two wonderful trips to Branson.  During one trip, Kay, my mom and Linda all got in trouble for laughing too loud in the hotel room.  I guess the people in the next room didn’t appreciate their bouts of laughter.  The knocking on the wall only made them laugh harder.  That is how much fun they had together.   During the summer when we had no where handicap accessible for my mom to go to, she went to Linda’s.  Can you imagine your mother-in-law taking care of your mother for weeks on end?  Well, I had that privilege.  My mom was loved by many.  She was a beautiful soul who will leave a legacy of generosity and kindness.

    HuHot

    If that was all there was, I would be beyond myself with grief, but that is not the end.  Instead I have hope.  Hope for an eternity spent with her in heaven.  It’s kind of hard to be disheartened about that especially when she was suffering so.  She fought and fought and fought some more.  In the end, her body gave up on her.  Multiple organ failure is what they called it.  I called it slowly watching my mother fade away.  When the person you love is suffering, imagining them happy and whole in heaven is a blessing.

    The last gift my mom gave me was in hospice.  She asked to sit up and I hugged her.  She looked at me so clearly and said, “I love you Lis.”  She laid back down and fell asleep.  She slept for that first night and into the day.  My dad came to visit.  I walked him to the car.  I came back in carrying a silly cat that Aunt Lucy had sent for the kids, that meowed a Christmas song, and showed my brother and my husband.  As I turned to sit it on the chair, she took one last breath and was gone.  I had been so afraid of the end and it wasn’t horrible.  It was peaceful.  She mouthed something that looked like “Ok” and she was gone.  That was it.  Another gift from mom.

    I am sad but I am also surrounded by wonderful memories and extreme silliness from my children.  (Maisey got make-up from Mema for Christmas.)

    maisey

    I will spend each day here knowing God still has a plan for me.  I know that each day that passes bring me one day closer to seeing Kyle and mom again.  Death of loved ones, especially a child, does that for you.  You no longer fear death.  You aren’t running towards it like life doesn’t matter, but you no longer fear the day that it will happen.  God’s grace does that for you.  His grace and mercy are what sustain me.  What a gift.  First, my salvation and second my mother.  I am a very blessed girl.

     

    P.S.  I had the worst time finding the words for my mom’s obituary.  I wrote one but it just didn’t sound right so Dan took over and wrote this beautiful obit for mom.  I love the way he described her.  She supported us when we were first married.  We had very little and she would always show up at just the right time with food and toilet paper.  🙂  She was never just my mom.  She was always my friend and biggest supporter.  She will be missed.

    Marly Ann (Messerly) Traster’s Obituary

     

     

  • Good Samaritan Moment

    Date: 2013.12.19 | Category: Jasmine (Shuang Shuang), Thoughts to ponder

    Please don’t just scroll down or skip this blog post.  Please take a moment and read about Emma and her story.

    Every day we are confronted with the hard.

    Every day we see injustice and people hurting.

    Every day we have the opportunity to help, to step up, and be a Good Samaritan.

    Have you ever stopped and asked yourself, “Which type of person am I?”.  The person who crosses to the other side of the street or the person who bends down low to help?  As a Christian, we are called to help.  We are called to share our plenty.

    Each of you should look not only to your own interests, but also to the interests of others.  Philippians 2:4

    But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him? 1 John 3:17

    Most days we choose to close our eyes, to not read the sad stories.  We scroll right on past the story with the little girl hurting.  It’s easier to watch the video of the Christmas Jammies.  We share that video making it go viral, but we avoid the stories of pain not wanting to damper our moods during the holiday season.

    We have tried over and over again to explain to Jasmine what Love Without Boundaries is. We try to explain it to her because it is such a big part of her story. We showed Jasmine her picture yesterday on their site where LWB was celebrating all the children who found forever families.  We have explained to her that we were reading the story on their “Featured Child” post and saw her face.  LWB was advocating for her because she was about to run out of time.  We saw her face.  We fell in love.  I literally cried tears when I saw her face.  We were NOT going to adopt older children.  We were already matched with two little girls.  Jasmine did not fit into the plans that we had made for our lives, but here we were with our hearts hurting for a little girl half way around the world.

    So we show Jasmine the stories on LWB.  We show her so she can understand what a miracle it is that God brought us to her.  We celebrate with her the children that find families.  We cry for those that are trying hard to find their forever families.  We pray for the children going into surgery. We cry for the children who die before they were chosen.  We talk about what the orphanage was like.  We talk about what she felt like waiting.  Jasmine knew what family was.  She was abandoned right before her eighth birthday.   Jasmine knows what it means to sit in an orphanage hurting.

    Yesterday LWB shared a story of a little girl named Emma.  She is four years old.  She has been sitting in an orphanage with a broken leg for months.  BUT she doesn’t just have a broken leg.  She has a compound fracture, which means there is a bone protruding out of her leg.  Let me repeat this SHE IS FOUR.  You can discuss who should be caring for her.  You can discuss who let her down.  You can discuss it being Christmas and money is tight.  You can even ignore all of this, but while you do Emma is on the side of the road hurting.  Can you even fathom the pain?  Let me add to this that they don’t hand out Tylenol or ibuprofen like we do here in the states.  There is NO pain control.  She is four and she is hurting.  Someone brought this little girl’s story to LWB and begged for help.  In essence, Emma is on the side of the street, hurting by no fault of her own, and people are walking by.

    Have you ever read the story of the Good Samaritan? I mean really read the story?   The people who should have helped, passed him on the road. The priest and the Levite passed on the other side of the road.  They didn’t just not see him.  They crossed to the other side.  Men who should have known better.  But one man stops.  He not only stops, but he puts the hurting man on his donkey.  He takes the injured man to the Inn and the Samaritan pays for the hurting man to stay there.

    Jesus tells us to love our neighbor as ourselves.  We ask for qualifiers.  Who do we have to help?  Who is our brother?  Who is our neighbor?  But Jesus says, “Which of these three do you think was a neighbor to the man who fell into the hands of robbers?”  Luke 10:36 

    He brings it back to us.  We are supposed to be the neighbor.  We are supposed to help.  Jasmine heard the story and said, “I want to help her mama.”  Jasmine asked her brothers and sisters to give up some things for Christmas.  I woke up this morning with Emma on my heart.  It is 4 a.m.  I’ve had a hard couple of days.  I would much rather be sleeping, but I felt prompted to write this for Jasmine.  She wants to help Emma.  So I decided to write this blog and then I opened the LWB page, I clicked on the donate here button, and I donated in honor of Jasmine.  My little girl who when asked what she wants for Christmas responds with, “I no want nothing mama.  I ask for a family. I have a family. I have love.”  Jasmine gets it.  She’s been here seven months and she gets what is really important.

    So I ask, “Who could you do the same thing for?  Who doesn’t really need another tie or sweater or oven mitt?   Who could you donate $20 dollars in the name of?  Who could you bless with the gift of helping Emma and thereby bestow the label “Good Samaritan” on?  Whose day would that make?”

    I’ve seen it happen over and over again.  A story really touches people and people give.  Let’s do this for Emma.  I mean really….look at this face.  Let’s send a little Christmas cheer to a hurting girl half-way around the world.    LWB – Emma’s Story

    Emma

     

  • Fear not…

    Date: 2013.12.14 | Category: Benjamin

    Do not fear, for I am with you… – Isaiah 41:10

    God is our refuge and strength, an ever-present help in trouble. – Psalm 46:1

    For I know the plans I have for you… – Jeremiah 29:11

    I know all these things and still I was afraid when we walked into Boston Children’s the day of surgery.  Afraid to take a chance.  Afraid that this day would be the last day.  Afraid that I would never again wake up and see his sweet smile.  Afraid that it wouldn’t go right.  Afraid.  Afraid. Afraid.  I should not have been afraid. I know better than to be afraid.  I know that He gives me a verse, about not fearing, for every day of the year.  “Fear not for I am with you.” was playing over and over again in my head as we walked through those doors. I can claim God’s promises and still worry. It doesn’t not mean I don’t believe or have faith.

    Ben

    I have seen God show up so many times over the years that I should know better than to fear.  Truly I should and in reality I do.  I spent my day confessing my sin of worry over and over again.  I turned it over to Him again and again.  I believed these words when I said them, “Let your will be done.”

    Can any one of you by worrying add a single hour to your life? – Matthew 6:27

    Ben 1

    My worry didn’t mean I wasn’t trusting his plan.  My worry just meant that I know sometimes God’s plan and my plan aren’t the same.  I want the happy endings, without pain and hardship. I want the beautiful stories where I can stand up and say, “Look what my God has done!”, but I have been there, smack dab in the middle of the hard.  I have prayed and prayed and prayed.  I have laid it all out there.  I have begged and pleaded  for just one more day. I’ve had faith that God would heal.  I’ve believed it with my whole heart and yet my child died.  The reality of picking out a little white casket is not something you soon forget.

    It took me years to realize, that Kyle’s dying didn’t mean I didn’t have enough faith or that I hadn’t prayed hard enough or believed enough.  It just meant my plans and God’s plans didn’t align.  His will was different that my want.  This is the reason it is sometimes hard for me to rejoice when others around me are hurting.  Because sometimes the gates of heaven can be stormed and still the child won’t survive.  Sometimes there is no happy ending.  People like to say “God has big plans for this child.”, but what does that mean for the child that has died?  Are you telling me God didn’t have big plans for this child too?

    Dan said it best after Kyle died.  He said in effect, that if you spend the rest of your life being bitter about what happened then Kyle’s life will have been in vain.  Let his life change yours.  Let his life make yours better. Let his life make a difference in this world and remember him with love.

    When we had Hopey, I didn’t shout my praises.  I thanked God.  I celebrated in my heart but I didn’t share the wonders of His glory because I worried what others around me would say.  Their child’s surgeries didn’t work.  Some needed heart transplants.  Some never went home.  Some spent weeks and months waiting for their child to heal and it felt wrong for me to celebrate.   Why should I have it so easy (relatively speaking) when others were hurting?

    The truth of the matter is there will always be someone else who is jealous of what you have.  The mother who can’t conceive is jealous of the mother who has a still birth.  The mother who has a still born child is jealous of the mother whose child lives five days.  The mother whose child lives five days is jealous of the mother whose child lives a year.  The mother whose child has no options for surgery is jealous of the mother who has spent months in the hospital.  The list goes on and on.

    Years later, I realized I was wrong for not sharing Hopey’s story and decided from then on I would praise God in the good and the bad.  I would not let the fears of what the world thought stop me from praising Him with all the glorious wonders He has done.   I have watched miracle after miracle unfold and this time with Ben was no different.  But I will tell you that even if it hadn’t gone so wonderfully, I would have praised God.  I would have praised Him for letting me be Ben’s mom.  I would have praised Him for every single day that I got to wake up and see Ben’s sweet smile.  I would have praised him because I was that mom who wanted more than five days and this time I got so much more. Each and every day is a blessing.  I have been blessed immeasurably by Ben’s life.

    Ben 3

    Ben is a sweet soul.  Many people commented about him while we were in the hospital.  Ben is strong and doesn’t cry very often.  People comment about how brave he is.  It is a good thing but at the same time it breaks your heart.  He’s been through so much that he no longer cries with needle sticks.  He smiles at people and he thanks them.  While Ben was recovering in the CICU, he was asked to walk.  Every lap around the big unit, Ben was allowed to pick out a small toy from the toy box at the end of the hall.  He picked out a car each and every time he went.  Finally, on the fifth time I asked him why he didn’t choose a puzzle or a book.  He told me that the first car, the Batman car, was for him, but all the other cars were for his siblings.   He missed the littles.  The only time he cried was when he talked about his siblings.  We were watching Despicable Me and Gru was reading to the three little girls and Ben sobbed.  I couldn’t figure out what was wrong and he told me that it reminded him of story time with his three little sisters.  That is the heart that my little Ben has.  He may be five but he has an old, old soul and I have learned so much about truly living life from him.

    Ben 4

    God does have plans for my boy and only God knows the number of Ben’s days.

    A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed.  – Job 14:5

    This time Ben’s hospitalization went so much better than I could have even hoped.  Dan and I were completely blown away.  Blown away by the gifts that God has bestowed.  We adopted Ben after hearing “uncorrectable” by many cardiologists.  We wondered if he would live long enough for us to adopt him.   We brought him home and had his cath done and there was some difference of opinions on what could be done or what should be done.   Someone added me to a heart group on Facebook and other heart mamas gave me HOPE.   We contacted Boston Children’s and the rest is history as they say.

    Ben had surgery.  Ben did wonderfully.  Except for a little problem with his rhythm, things went without a hitch. Ben was discharged one week after surgery. As we were leaving he was running down the hallway yelling “Momma! This feels SO GOOD!” Before surgery he couldn’t really run at all, and now he is running and laughing (even with a fresh sternotomy). Amazing.

    Ben 2

    The cardiologists and surgeon were tempted to try to close his VSD, but assumed since he is five years old, he is far past the stage where his pulmonary hypertension would be reversible. However, after seeing his great results from the arterial switch, the large gradient at his PA band, his SpO2 and his encouraging lung biopsy findings, they are now thinking that his pulmonary hypertension is a clinically reversible state. We will see how he does over the next 6-12 months and then consider taking down the PA band and closing his VSD with a fenestrated patch. We had given up hope that this was even possible, and now it looks like he might have a chance at a long life.

    We went from no hope, to some hope, to great hope.  We celebrate but this is no different than my time with Hopey.  I still have friends that are hurting.  I still have friends, that I have met through Facebook, who are wondering why the things that are happening to their child are happening.  These friends have great faith and I watch the ways their lives touch others.  They are a testament to God’s love for the orphan.  They show what redemption and unconditional love really means.  So in the midst of my rejoicing, I ask that you please continue to keep each of them in your prayers.  Pray for God’s peace to surround their families.  Pray for great healing.  Pray that God will continue to be glorified in each of their lives.  Please lift up Rini, Lizzie, Joshua, Kai, Evie, and Lily and marvel in the way God is using each of their lives.

    Rini’s Mama’s Blog

    Lizzie’s Mama’s Blog

    Joshua’s Mama’s Blog

    Facebook page – Praying for Kai

    Evie’s Mama’s Blog

    Lily’s Mama’s Blog

     

     

     

     

     

     

     

     

     

     

     

     

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