Amazed...completely.

Again, I am embarrassed and apologize to any of you who continue to check in on our family. The lack of blog action doesn't reflect the activity level of our family, that's for sure!! We have been having a blast this summer...lots of baseball, soccer, running, swimming, pitchers upon pitchers of iced tea and lemonade! Along with the carefreeness of summer, we have been carrying quite a burden concerning Gracie's health and upcoming surgery.

If you have been here awhile you know the severity of Gracie's heart condition. Well, we are at the crossing point right now as we near what has been given us an estimated life expectancy for our sweet little girl. That is...without a procedure called the Fontan. In March of 2010, Gracie was scheduled for an extremely high risk procedure. At her pre-op appointments the day before the scheduled surgery, I was told it would not be done. We were devastated. All along, this was the procedure to give her some years--who knows what could happen if Gracie were given several years? Even 15? What advances would be made in that time? Instead, we went home knowing that the Mayo Clinic was reconsidering the plan for Gracie's life--a short term, rather than a long-term plan. Crushed.

Again, last winter, as Gracie became bluer and bluer and her activity level decreased, the Fontan was talked about. Again in March, we received the news that it was too high risk. Instead she was to have a shunt replaced, which would eventually wear out her one ventricle and she would have a short life.

With every procedure, every surgery, we have had peace. Even with the poor odds, even with the seriousness of the situation, we have had peace that she was right where she should be, we were putting one foot in front of the other, all the while praying for God to give us wisdom and to just follow His lead. This time...we have had no peace. I'm a searcher, a researcher when it comes to my children. I have spent hundreds of hours reading medical journals that way beyond my grasp--I'm really not that smart! Yet, I'm learning all I can about statistics, surgeries, treatments. Curtis, who is much, much more intelligent than I am doesn't work that way. He is so logical, yet the news is always so devastating that he has shared with me that his answer is not in journals, statistics, and all of that, but rather in prayer and Scripture. Perhaps it's because I happen to be the one who is at the hospital with Gracie, brings her to appointments, meets the other families who have sick kids. He is DAD. We cope in different ways, I guess. I think it makes us a great team!! Regardless, we have had no peace about this upcoming surgery.

Michigan. We have had no ties to Michigan whatsoever. I knew about Boston and CHOP--awesome heart facilities for children, but Michigan? In the past couple of months, several people had asked me "Have you thought of Michigan?", "I know__________, who was treated for a serious heart condition at Michigan", my mom sent me a newspaper article about a little girl with heterotaxy who was doing well after a few surgeries in Michigan. I began to look up University of Michigan and CSMott--ranked #3 in the US for pediatric hearts, specializing in Hypoplastic right and left hearts--Gracie has that with her heterotaxy. We prayed. The answer--Michigan. When we went for Gracie's cardiology appointment in June, I asked her cardiologist to send Gracie's records to Michigan. He did. He also told me that likely the answer would be the same.

Today I grabbed the mail as soon as we arrived home from a fun weekend of soccer. A letter from Michigan and it was small and skinny. That is never good news, is it? At first I opened it up and really couldn't understand what I was reading. Then..."Quite honestly, from my review of the data, I would not feel that a Fontan procedure would carry an unusually high risk." and "I would think a fenestrated Fontan would be a better choice." Woohoo!!

So what does this mean? First of all, we really want to keep Gracie at Mayo--perhaps the doctors will reconsider and perform the Fontan procedure. If not, we will schedule an appointment as soon as possible in Ann Arbor, Michigan. If Gracie's insurance isn't accepted at UofM, we will need to find somewhere that she can have this surgery that could perhaps give her a much longer life.

God speaks. He speaks mainly through His Word, but He also speaks into our hearts where we are to turn next. As stressful as these past months have been for us, He has given us this comfort that we just follow His lead. Sometimes, I believe, he places people and circumstances right into our paths--sometimes we call this coincidence. I believe they are God incidents instead. Divine appointment, so to speak. We rejoice with this awesome news today, not only the words from this letter that are so positive and hopeful, but mostly we rejoice that He continues to provide a way, He continues to lead me and guide me, He continues to reign here on earth and give doctors wisdom and children hope.

I'm amazed, simply amazed!

Gayle

ups and downs--the rollercoaster continues

I'm thinking we need to come up with a name for this roller-coaster we have been on for the past 41/2 years--any ideas??

It's been awhile since I've written because, to be perfectly honest, I'm at a point in which I'm not sure what is important to share and also if I even understand fully what is going on.

I'll start with Gracie. She had a pretty tough recovery after that whole tooth episode--wowzer, that was a rough one for her! All winter long she was sick with something it seemed. She had lots of colds and flu bugs--only one hospitalization, but sort of scary nonetheless. She has started developing some pretty major headaches. With these headaches, she shows stroke-like symptoms. The first one happened clear back in September, then another one in December, which put her in the hospital, then she had one a few weeks ago. She has been seeing a fabulous neurologist at the Mayo Clinic who has been trying to figure out what exactly this is all about. She has these symptoms, then all of a sudden, she's fine. Completely fine. In December they did a pretty detailed MRI which lasted several hours. At the time, they told me she had little spots on her brains--one doc even called them tiny tumors. They were located in the very center of her brain, which amazingly isn't all that useful. They deemed the cause her stay on ECMO. The neurologist explained to me that very few children had survived a 10 day stay on ECMO until the past 10 years or so. They are finding these spots on the brains of nearly all of the children who have an MRI. Gracie is quite blessed! Many children have these "spots" in areas of the brain which have a lot more function and also have much larger "spots". The neurologist is completely amazed at Gracie's abilities, her sense of humor, her awareness, her speech, her creativity--the whole package. They also saw a larger "spot" on her brain, which they called a "silent stroke". Perhaps she had a slight stroke with one of these headaches, maybe it was even before she was getting the headaches--who knows? She really has no repercussions other than a lack of reflexes in one of her feet. Not a big deal at all--she, nor anyone else, would ever even notice. She continues to be at "high-risk" for a stroke.

Gracie's blood counts have been pretty stable, although we have noticed throughout the winter a definite decrease in her energy. She can barely make it to the top of the steps before she lies down or asks to be carried. She turns very blue with every activity. God made the body so fantastically, however, because it tells her to stop. She spends a lot of time coloring, drawing, watching TV, playing video games--to a teen PERFECT! She, however likes to run and jump and play--her body only will let her do those things for a very short time. She had a cardiology appointment a month ago and the doctors are figuring out a surgical plan for her. It appears she has two options--one very high risk with a possibility of a longer life, the other very low risk with the reality that her ventricle will shut down in a few years and her options will be run out. The doctors mentioned a surgery date in June, but we are hoping to wait until September--it looks like it won't really make much difference. Right now, it is out of our hands. Gracie has beat many odds and we know that we know that we know her days are numbered as are ours. God will take her home when her purpose has been fulfilled--that's just how He works. We are hoping and praying that time is a long time away although we know His plan is perfect and paradise awaits her. It's simply not our call. That is so freeing to us as we are in positions of making life or death decisions. The Prince of Peace has this all figured out--we are just putting one foot in front of the other and enjoying each day we have with her and our other kids.

Gracie's personality is fantastic!! She is so stinkin' funny. All. The. Time. Some of the stuff she comes up with just blows our minds, so very creative. And super cute, and squeezable, and the life of the party! I truly can't imagine this world without her...I simply cannot picture it. I'm so glad God worked it out so we just experience the here and now. We don't need to know what lies ahead--just the choices we are making today...today I choose LOVE.

How's that for a segway into Selah's life? Selah had been having a pretty decent winter until the past couple of weeks. Once again, we are seeing some pretty disturbing behaviors with her--it's as if she completely shuts down in front of people, then goes off and destroys while she is alone. We cannot leave her alone for any period of time or we have a disaster on our hands. I just can't figure it out. What we are learning through all of this is our responses have to mirror Jesus's. We fail miserably most of the time, yet always grab perspective and move forward. We are at a "moving forward" time right now. Yesterday I asked her if she thought she was a good girl or a bad girl. She said, "bad girl", so we made a chart. Yep, I'm a "retired" teacher. We went through her days and found out she is bad just a few minutes each day, so really she's very good the rest of the day--this also fits into the time unit she's in at school by the way! It's just those bad minutes are REALLY BAD...I mean REALLY BAD. We also drew pictures of our family and how we all fit into it so well. The reason is we are attached because we love each other. She loves when we are on vacation, when she is eating ice cream, when the sun is out. Otherwise she only likes us a little bit. What a tough concept for a child to grasp when she spent the large majority of her life completely unloved! We can talk and talk and talk, but until she FEELS love, I'm afraid her responses are not going to change. So often, she likely doesn't feel love because of the consequences to her behaviors, even the reactions from us and our other kids. We are, once again, making a point to hug her more, to tell her she's beautiful more, to just play with her more. The behaviors cannot be overlooked because they are not even safe, so we do have to deal with these. I have read so much, studied so much--I know what to do, yet it's so hard to always be kind and loving to a child who is constantly destroying. Our responses are always a choice. We can choose to be kind and loving or we can choose to just coexist. Sometimes I need to step away for a bit and gain a little perspective. I hate it that my mood STILL affects my responses. Less and less, but it still does!

We had a terrific vacation to Florida over spring break. We did a LOT of sitting by the pool and just relaxing with our family. We did venture out to Universal Studios a few times late afternoon and evenings, which was also fabulous. I'm not sure why we still live in the frozen tundra--perhaps it's because I would get nothing done if I lived in a nice climate. It's 58 degrees out now and I'm sitting outside with my laptop--I cannot let a nice day be wasted inside. And yes, Floridians...58 degrees is a nice day for Iowa in April!!

Thanks for checking in!!

Love,

Gayle

much better

Gracie is doing SO MUCH BETTER!! Thanks for praying for her! I did use some bribery to get her to eat yesterday--she was so afraid of putting anything in her mouth and just wouldn't open it! I told her we will go and pick out a toy if she just tried something. I walked into the kitchen with her on the floor with the turkey, cheese, and bread spread out so she could put together a sandwich...yeah, ON THE FLOOR! Anyways, she tried and finished it--she was so hungry! We then went out and purchased a fabulous new carseat for her babies and gorilla she has named Gracie. She then wanted to show her daddy that she could eat, so we met him for lunch and she ate, and ate, and ate.

By last night's basketball game, which was awesome by the way, she was showing everyone her new sparkly, princess smile--precious. Even people who really wouldn't care--they were included in the open mouth view right in their faces.

All this to say--Gracie is back, she's confident, happy, feeling good, and ready to take on the world!

Gayle

Quite a week!!

First of all, thank you for praying for Gracie--she needs those prayers. This little girl has had so many surgeries, procedures, and tests and has really taken everything in stride. Until now. These teeth are making her so sad--she almost seems depressed. She keeps looking in the mirror and crying. She won't open her mouth or smile--she even told me that she just wants to be a little kid. I think she is starting to realize that she is different from other kids, asking why she has all of the scars and now silver or missing teeth--it breaks my heart.

We did get stranded in Iowa City--if you are from around here, you probably know how treacherous the roads were from Monday through Wednesday. My dear aunt Mari went to be with Jesus on Saturday and the funeral was on Thursday in South Dakota--everything inside of me wanted to be there...and I made it! Curtis stayed home with Gracie on Thursday and I made a super quick trip west.

Mari's life was too short in our eyes, but we know she is now with Jesus with no more cancer, no more suffering. It's just so hard to say "good-bye for now" to those we love. And my sweet cousins...how my heart aches for them. She did leave them with so much--she raised them with character, gave them countless memories, and a foundation that completely has prepared them for this world...and more importantly, the next.

Today, Gracie and I are finally hanging at home--we are having a Veggie-Tales marathon and hopefully baking cookies. I hope that will give her the gumption to eat something.

I do struggle with her being sad, with her having pain. This is just something that I have not witnessed in my other children as 4 year-olds. She just has to go through so much some days--it doesn't seem fair at all. She is so stinkin' sweet...my heart has been breaking for her this week. I know this had to be done for future heart procedures and surgeries--it's her only option. It just all seems so extreme--I realize they did EVERYTHING to protect her heart by crowning all her teeth--she has very little left to even present an infection or cavity...and she will get used to it--she will see herself as beautiful again--I know this. God created her perfectly...I tell her this at least 100 times each day...she also hears it from her daddy and brothers and sisters constantly. She will know too...soon.

This post is all over the place--I apologize--but this momma's emotions are all over the place too! Welcome to my world!

Have a terrific day--I'll post a picture when I can get a smile out of this little sweetie. You will see--Gracie is even more beautiful with shiny teeth!!

Gayle

her pearly whites

Gracie is having quite the extensive dental surgery today. They are crowning and root canaling (probably not a word) all of her teeth right now. Her teeth carry a high risk of infection and needed to be taken care of before her heart can be operated on again. Since the Mayo Clinic does not have pediatric dentistry, we are at the University of Iowa Hospitals in Iowa City.

Gracie is quite the patient--she has everything figured out, tells the nurses exactly where she wants her blood pressure taken and which little finger should hold the pulse oxymeter. She did tell them they could do anything today, but give her pokes and if they do give her a poke, they are only allowed one! No tears, no crying, just complete sweetness--she is amazing!

Since they haven't worked with Gracie before, I did get to hear how involved her heart disease is. The anesthesiologist pulled up a chair and explained all of the risks--any time Gracie has anesthesia, it carries a significant risk. Today's surgery is expected to be quite long--the longer on anesthesia, the higher risk it carries. So...pray for Gracie, that her body can tolerate the meds, that she will have adequate oxygen throughout the procedure, and that her airways will not be blocked in any way. They will ventilate through the nose since they are working in her mouth--this will be new for her.

I am using a public computer, so I should let someone else on. I will update as I hear anything!

Thanks for praying for Gracie!!

Love,
Gayle

Two birthdays, Christmas, and a very happy New Year!!

We woke up in the hospital on Gracie's 4th birthday to be told that we would be there for awhile. The tears flowed! I knew she didn't need to be there, but they were awaiting the results of her blood work. Gracie's amazing, kind, compassionate cardiologist stopped by for a visit--I asked him if we could go home. He answered with the three letter word I wanted to hear--"yes". After visiting with the doctor on the pediatric floor and throwing out his name a bit, we were released in time to make it home when the kids arrived from school. All of the Opps were thrilled...especially a newly turned 4 year-old!! The hospital so kindly celebrated Gracie's birthday with her in style--cupcakes, gifts, balloons--super, super sweet. The celebration when this little sweetheart was home however--A VERY BIG DEAL!! Gracie wanted to drive the little cars at the hospital so very badly, but was on strict isolation and couldn't leave her room. I called Curtis to get her a car for her birthday, thinking a little cozy coupe, he picked out a battery operated convertible--truly appropriate for a princess of this magnitude!!

Soon it was Christmas...

Gracie continues to battle whatever bug she has. She is still getting headaches and has quite a cough. Just not herself. The way this child lives her life is inspiring, that's for sure. At 4 years old, she can teach most of us a lot about life. She has been dealt a tough hand according to this world--lots and lots of pokes, she can't play outside, she can't play with other children this time of year, she tires easily and can't do normal things other children can do. Yet, she always has a smile on her face, she has a determination to live life well, enjoying everything. Her world is very, very small--yet she makes it so big!! I just wish everyone could know this little being--she's truly amazing!!

Our Christmas was fabulous--this past week of spending long, restful days with the ones I love most is time treasured. Many days, we haven't even gotten out of our pjs. I think Selah has worn her jammy pants from gramma every day since Christmas. They have been washed in between, but right back on her they go! A couple of days, she had them on over her other clothes!

2010 has been a terrific year for our family. Today I have been making a digital family photo book and have been taken down memory lane. Our Make-A-Wish trip, the cancelled surgery, a huge summer road trip, a graduation, a scary car accident, a hospital stay, , sending a child to college, some fun sporting events...yet what we treasure most are these quiet days at home with all seven of us curled around the fire watching movies, playing games, laughing about the latest antics of a particular 4 year-old--life is good! What is 2011 going to bring? How thankful I am that I don't even know!! Life is full of surprises, of twists and turns. It's not always how I would write my own story, I could never be this creative...but what an adventure God has given us. I rejoice in the fact that His story is the best one ever written and how thankful I am that I get to play a small part in it!

Resolutions? None. This family will just continue to seek out the Lord's plan for our lives and live accordingly!

Happy New Year, friends!!

Gayle

The last day of being 3!

Gracie is out of her MRI and did very well with anesthesia. We have not heard the results yet--Curtis was just talking about the fabulous LIFE performance at church when one of the groups sang a song to Philipians 4:6-7--Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God. And the peace that passes all understanding will guard your hearts and minds in Christ Jesus. I can't really say we are anxious--we quite obviously don't want Gracie to have any brain issues--her little body is already enduring so much. I don't believe that means we are anxious. We are actually having a nice time snuggling with our daughter today. Right now Curtis and Gracie are making pla-doh cookies, watching Cat in the Hat, and eating ice cream--doesn't sound so bad, does it? She is feeling much, much better--her fever is gone, she still has that rotten ole headache, and is walking, talking, and acting pretty normal. No matter what is going on in her brain, it doesn't seem to be affecting her motor skills or cognative abilities. Now anyways.

We should hear some results soon. They also tested her for RSV and influenza, and a variety of bacterial stuff. She, of course, has everyone wrapped around her finger! The doctors and nurses LOVE her...she's quite famous around this neck of the woods.

We did just get some visitors--our friend, Betty, from church is a couple of floors above us and is reported to be doing much better. Her husband, Dave, and Bill and Aimee, stopped in for a chat. It was so good to see some friends!

We will not be coming home today, but there is hope for tomorrow. We will await the results of the tests and if things look good, we could be on our way to celebrate Gracie's 4th birthday at home! Curtis and I realized she has either been in the hospital or just a day home for every birthday--what's up with that??

I will let you know when I hear anything and if there are any plans to follow! Thank you so much for praying for our family. We are blessed!

Love,
Gayle