NEW NEWS!

Happy Fall and almost Thanksgiving to all of our family and friends! What a whirlwind of a season it has been for us! Our little big guy is now two! It's a little humorous, because most of the time when your kid has a birthday, there is a sense of unbelief that your child is growing so fast. With Abe...it's a little different. He has been looking, acting, and tantruming like he was two since he was one. So, although we had a great time celebrating Abe's official two year birthday...it was just funny to everyone I talked to that he was ONLY turning two. We love that kid so much...but he HAS earned the title of "mommies little sour patch kid". He can be SO sweet, and incredibly sour all in the same 5 second span. He keeps us on our toes...and also somewhat in shape (wrestling that kid into his pants covers my cardio and strength training for the week;).

construction cake:)

Got his first undies!

Not quite Abe.

We barely settled home after Emri's surgery before we decided (since she was doing SO well and because we're crazy) to take a last minute trip with Brett's parents to Denver to see Brett's brothers and their families. The trip was.....interesting. I flew out with the kids and Brett's parents, and Brett came a day later. The trip there went well....I sent Abe back to Grandpa on the plane and Grandpa made the wise decision to pay 6 dollars for Abe to be able to watch some Disney Junior. We didn't hear a peep from him for the rest of the trip. Emri was great and didn't need O2 which I was very thankful for. We got to Denver on Friday and had a good time hanging out with family that night. On Saturday, the girls took the kids to the zoo and soaked in the 70 degree Denver warmth (It was 17 degrees the day we left Denver...). It was such a fun time---the kids got to spend some fun time together and the animals were all out to show off. It was Abe's first time at the zoo and he was INTRIGUED. He zoomed around that zoo with the most astonished look on his little face. Brett came in that night and we had some more fun with family. Sunday morning Abe woke up with no voice. By Monday Abe was miserable with croup and an owie ear. Brett had already left Monday morning, so grandpa went with me to take Abe in to urgent care. They decided he needed antibiotics for an ear infection and steroids for his croup. He spit out anything they tried to give him orally and ended up with four pokies. I have never had a kid on steroids...so I didn't know what to expect...and I didn't receive adequate warning. By Monday night Abe was in a RAGE I can't even describe in words. I called a nurse to make sure it was normal...which it was. When I told her I had to fly with him the next day, she just LAUGHED. She laughed. We DID have a great time hanging out with family, but Abe's hulk-like rage definitely put a damper on things. Tuesday went OK until we got to the airport where Abe decided he couldn't handle "it" anymore. I took him to a corner and just put him on the ground where he continued to thrash all over the place, giving himself a bloody nose, bruises and scratches all over the place. I had the kindest old retired nurse walk over to me and say, "it looks like you need a buddy." I did...and I took her up on her offer for company. We had a great long talk while Abe finished his rant. He came up to me when he decided that he was done and held up him arms. I picked him up and he was asleep within 10 seconds. The plane ride back was less eventful than the wait in the airport. Abe only had enough energy to throw two small fits. I was one happy mom when we finally landed in Seattle again.

ZOO!

Smirky

The whole Family!

Emri and Giselle:)

Grandma Schemper!

I'm officially allowed to make fun of Brett for being OLD...he turned 30 on November 19!!! He said he feels older...and he currently has a torn ACL and back issues...so he also looks a little older too! Poor guy...we will have to fix him soon. As most of you now know, this November 19 was extra special for us. Besides celebrating Brett's 30th birthday, we were also celebrating the birthday of a very special little boy across the ocean! Although it is not official on paper, this little guy is part of our family in our hearts. Adoption has been on my heart since I was young...and my heart has been nothing short of exploding with the desire to adopt for quite some time now. Although our lives have been slightly chaotic in the past few years, Brett and I have always known that we wanted more children....we just weren't exactly sure how they would join us. How did we choose South Korea?? It's a long story...but God led us straight there...and that's really all I feel like explaining at this point. There are numerous little boys waiting to be adopted in South Korea. The people of South Korea really value clean blood lines...so they won't adopt boys....which is why there are so many waiting boys. The adoption process in South Korea takes time, and we were told to plan on waiting over a year to get our call to court. Of course, we hope it won't take that long, but we trust wholeheartedly on God's perfect timing.

We have picked out a name for our little man. His name will be Jaemin (pronounced Jay-min). "Ae" in Korean means love...and "min" is in Korea's official name...Dae Han Min Guk (Great Country of the Korean People). We wanted to find a good Korean/American combination and we feel like it is the perfect name for our little boy. I can't share many details on our little guys past or present situation since we have not officially passed our homestudy or signed referral papers...but Jaemin is officially not on the waiting child list anymore...and according to the adoption agency we are working with, he is on hold for us!! We are so excited for this next adventure on our rollercoaster of a journey....and cannot WAIT to meet Jaemin and bring him home to become an official member of our family!

We have a life stuffed full of things to be thankful for this Thanksgiving season and we strive to make sure that we remember to thank God for all the ways he has been working in, and continues to work in our lives. We give God the Glory for His never ending sovereignty...through it all. As always, thank you for reading! Until next time!

Rod extension #2

We are here, in Baltimore, MD once again for Emri's second rod lengthening. For those of you who did not know, we had to reschedule surgery from mid-September to October 15 because Emri fell and cracked her skull on our driveway! She had a little bone puncture the inside of her ear canal and caused a lot of bleeding and drama. She recovered remarkably well and we are now once again anticipating Emri's spine surgery. I will keep updating the blog for those of you who follow our story on here, but not on facebook. Here is what is going on here, in Baltimore...

Oct. 12---"We made it...the flight was beautiful and long. Appointment at 7am...6 0'clock shuttle. Goodnight!"

We wore masks to scare everyone away:)

Mt. Ranier I believe...with some sweet clouds.

Landing for a quick stop in Chicago.

Before landing in Baltimore.

Oct. 13---"Our day consisted of a 7am pre-op with Sponseller. He is pleased with her x-rays and thinks things should go smoothly. We had anesthesia next, which is always the scary appointment...Emri is a fragile little girl-and that is reiterated by them every surgery. We had an echo after anesthesia that will be read by Dr. Dietz tomorrow. We had a great dinner at Bubba gump and are planning to snuggle with movies for the next couple of hours. Emri has been a trooper as always, and seems to be handling everything with a maturity beyond 4 years old. Thanks for the prayers. We will be meeting with Dietz tomorrow and then prepping for surgery early wednesday morning."

Dr. Sponseller himself. We are so thankful that we get to have him as Emri's surgeon!

Goofing off while waiting!

Oct. 14---"We met with Dr. Dietz today. Emri gave him a great big hug the second he walked into our room:) We will start with the good news. Emri's valve leakage is still minor according to Dietz, which we are thankful for. The semi-bad news is that her aorta grew. It only grew 1.5mm, but growth is growth and it's not something we want to see. We are increasing one of Emri's medications to try and get on top of the growth. Dietz is also feeling very optimistic about some new research going on that we are excited to learn more about! He never stops working to find more answers and new solutions...and we are so thankful for him. Emri is acting very brave about the surgery tomorrow. She is ok with the surgery part, just not ok with the mask that we have to use to put her to sleep. The last three surgeries the mask has been a very traumatic experience for Emri and consequently for us. We are praying that she feels more at peace this surgery now that we have been able to explain more about the experience to her. Emri is just an amazing little soul and I have never felt more thankful to receive the unique and rewarding experience of being her mommy. We covet your prayers for Emri and us tomorrow. Please pray most of all for peace and strength. We can always receive comfort in knowing God is sovereign."

Emri and the "good man", Dr. Dietz.

 Emri with Genetic counselor, Gretchen. And of course, kitty.

October 15, 8AM---"Another rough mask experience. Emri was trying so hard to put her brave face on this morning. She performed about 30 surgeries on her little kitty, and would put a mask on kitties face before "surgery". She would then ask Brett or I for the screws she needed for surgery. We were feeling like this mask experience was going to be better than the last one. On the way to the OR, she said that she was scared. When we got into the room, there were tears rolling down her cheeks, and when the mask went on, she was terrified. She fought so hard again to stay awake. I can't even describe how terrible watching her go through this again is. She is so brave. I will update when we know anything."

9AM---"Took an hour to get all the IV's and wires into place. The incision has been made."

10AM---"It's over and she did well!! Waiting to see her now! PRAISE THE LORD!"

4:30PM---"Emri has finally been fairly comfortable for the past couple of hours. She woke up very agitated and was complaining of a lot of stomach pain. Because she was in so much pain she was given a dose of morphine. The morphine made her really itchy and so she was given benadryl to help stop the itching. The combination of the two of the meds made for a very loopy little Emri. They have set a goal for her to sit up in a half hour in hopes to get her body moving and her bowels more awake. She has been watching Dora and drinking water...and telling us how much she DOESN'T want to sit up. We shall see how this goes. THANK YOU for all of the support and prayers. We feel very supported and loved...and very very blessed."

7PM---"Our day...starting with surgery and ending with a WALK! Way to go BIG GIRL!!! This kid is amazing."

October 16, 5:45AM---"Horrible night for our sweetheart. She has been in constant, severe pain all night. I have felt so helpless as she is begging me for more medicine. We have done Oxycodone and Valium, and both didn't touch Emri's pain level. We have come to the conclusion that we probably have to hook her up to the PCA (pain pump) with morphine, which we know will not be good for her post-surgery stomach issues. She is just in too much pain. Prayers for our sweet girl as we once again take 1 step forward and two steps back. She needs some relief."

2:00PM---"Life can be so extremely painful sometimes. We just learned that a 13 year-old marfan friend had a massive stroke last night, most likely due to complications of marfan syndrome. Please, please lift her and her family up in prayer. Emri is sleeping comfortably on morphine right now. We have moved out of PICU and Emri is on a pain pump. She is still in a lot of pain when the meds wear off. Marfans is not my favorite right now."

8:00PM---"Emri has been given 6 morphine doses today. That being said, she walked 5 laps all together around the wing and walked up 3 stairs for the pt today. She is doing so well compared to how she usually looks on day two of spine surgery. We are being told that we could be released as early as tomorrow, as nervous as that makes me. We will see how the night goes. Thank you all for the ongoing support. Please continue to keep Emri in your prayers as recovery is always a trying time."

October 17, 10:30AM---"There is so much going on in the marfan world right now. Our friend Catherine, who had the massive stroke, had a surgery on her brain yesterday. Our little friend, Ryker, who is younger than Emri, is having an aortic repair today due to his aorta growing at a rapid rate. We are definitely counting our blessings today. As of right now, the plan is to be discharged from the hospital this afternoon. We will be staying in Baltimore until Tuesday, because we have a pulmonary appointment at Hopkins on Monday. We have been overwhelmed by the amount of support and prayers that we have received during this time...as always! Help us overwhelm Catherine and Rykers families with prayers and support too! Being a mom of a fragile child, myself, I cannot even begin to imagine what these dads and moms are going through at this time."

2:30PM---"Guess who busted out of the hospital today...with a smirk on her face! We are giving God all of the glory!! Emri is in a comfy bed with her ipad, headphones and Mickey mouse."

October 17, 10PM: "Emri has had a good night, but still in pain frequently. Tonight while she was crying for meds she told us that surgery hurt her feelings...and that's why she was crying a lot. She walked around the hotel a bunch tonight and did great. She also now has sparkly glow in the dark fingernails. We are feeling thankful to have our sweet girl acting more and more like herself. We continue to pray for Catherine and Ryker and hope that recovery comes sooner than expected for them as well."

October 20, 2PM: "This amazing pulmonary Dr. is part of Emri's incredible team of doctors at Hopkins. We are very thankful to have Dr. Neptune on our team!!"

October 22, 10AM: "We are HOME! So happy to be here and have this surgery behind us. The two littles missed each other. Thank you to all who have been supporting us and praying for us. Emri's recovery has been so much smoother than the last few times and we are so grateful to be home this quickly!"

Eye update

Here is the promised post about Emri's latest eye exam. I have said before that Emri's vision is one of the most frightening/frustrating/complicated parts of marfan syndrome...and I continue to have that opinion. This exam though, gave us a small ray of light as we learned that something GOOD could possibly be happening in Emri's eyes! The opthamologist at Childrens that we see is a highly sought after doctor, and we literally have to schedule 6-9 months ahead of time to get a slot in with him. He's good...and smart...but blunt...and brutal at times. He began the appointment by reviewing what we had learned about Emri's eyes last appointment. Basically with marfan syndrome, the lenses that usually lie in a crescent shape in front of the eye, many times become loose. When Emri was a baby, we used to be able to watch her lenses wiggle around in her eye-her eyes would look kind of like they were shimmering. Over the last couple of years, I haven't noticed this as much. This is because Emri's lenses have become SO loose that they have balled up into a spherical shape. This "lense ball" is in Emri's field of vision...which is why her vision is so incredibly distorted. Last eye exam the doctor explained that because Emri's balled up lenses are so much thicker than normal shaped lenses, they are most likely putting a lot more pressure on her eyeball and that this greatly increased the risk of developing glaucoma (pressure in the back of the eye that slowly deteriorates vision). If Emri were to develop any signs of glaucoma, it would be important to get her lenses removed promptly....but that wouldn't take away the glaucoma...and it would majorly increase the chance of retinal detachment (blindness if not surgically repairable). SO...the doctor has said to me...probably over 50 times..."You really are stuck between a rock and a hard place." Great. After dilating Emri's eyes with the dreaded eye drops, the doctor came in to do his exam...not expecting to see much of a difference. He found something that surprised us all. Emri's balled up lenses have slipped lower in her field of vision. This was a good thing in the sense that Emri's risk of glaucoma decreased dramatically...because the pressure was no longer being put on the front and back of the eye. Praise God! The doctor did explain that Emri's vision is still completely distorted by her lenses and that there is no perscription high enough to correct this. He explained that eventually her vision will get so bad, she won't be able to function and the lenses will have to be removed anyway. This was discouraging...but then I remembered the eye doctor in Baltimore saying something about some kids whose lenses just slip all the way down to the bottom of the eye, out of their field of vision. I mentioned this to the doctor and he said that he hadn't even thought of that....but yes, although rare, it could happen! If this were the case, Emri would most likely only need to be fitted with a thin set of contacts...and we wouldn't have to mess with her eyes at all. So needless to say, we are voting for option C. We are hoping that praying that some day Emri comes up to us and says that she can see better WITHOUT her glasses which are currently a perscription of -18. What a day that would be!
As of now, Emri functions quite well for having vision as bad as the doctor says she does. It's amazing how well she navigates life. Watching her, you wouldn't be able to guess that she's legally blind and is constantly peering through ball shaped lenses that drastically distort her world. I have often imagined a day where Emri sees the world clearly, without her lenses...and I always wonder if it would be a little scary...maybe she'll want her old lenses back! Maybe her world is even cooler than ours! :)
Anyway, I hope you who actually stuck with me and read this whole thing were able to grasp a little of what is happening with Emri's eyes. And join us in praying for those lenses to drop out of Emri's field of vision, and that her retinas remain strong and intact. Thank you!

A New Chapter

Well howdy folks. It's been some time since my last blog and consequently there is a lot of catching up to do. Emri's spinal rod lengthening surgery is quickly approaching. We now have less than a month. We head out on the 14th of September, and surgery is on the 17th. My heart sinks lower each day we get closer. I know summer is coming to a close...which is sad...but I also have been looking forward to just getting this next surgery behind us. PLEASE pray for a healthy and quick surgery/recovery for our sweet girl. 

We had been struggling to come up with a solution of who could watch Abe in the mornings while we were gone, since Brett's mom teaches mornings, and my mom teaches all day. Our prayers were answered when Brett's Aunt Ruth volunteered to fly here from New Mexico and help with Abe...what a relief! Abe knows Aunt Ruth and even gave her a few snuggles when she visited a few weeks ago. It feels so good knowing that he will be adored and spoiled by people he knows and loves while we are gone. This will be our longest time away from him, which will be hard...but less hard knowing he is being so well taken care of.

The title of this post is "A New Chapter." Our family has been going through an overload of change recently. To make an insanely long story very short...Brett now has his own company and has been working from home for a month. Over the past few months, God...in an amazing number of ways...has been making it completely clear that this was the path our family should be taking. Brett is enjoying his time working from home and loves the new flexability that comes with owning his own company. The name of his company will be ANC Architecture...although it will be ANC design until he officially gets his license. ANC stands for...you guessed it...A New Chapter! A new chapter for us and a new chapter for his clients. 

And because we are crazy people who love to make life overly stressful and dramatic (NOT) we will also be leaving Lynden sometime in the next while and moving to Mount Vernon. We will be staying there for the rest of our lives and never, EVER moving again..at least that's my vote!! 8 moves in 6 years is a little much for me. More details to come on that whole situation at a later time. 

This summer has been a good one. Emri turned FOUR on June 8. Every birthday we celebrate with Emri is filled with thankfulness and awe. We are so thankful that God has given us 4 amazing years with our incredible little girl and in awe of how far she has come in her short 4 years of life.  Emri got new leg/feet braces and is walking SO much straighter! It has been amazing to watch her improve every day. She absorbs information like a sponge and can't wait to start school again in a couple weeks. Abe is talking more, loving more, helping more, hurting more, and GROWING more. He has now reached the perfect ram-his-head-into-the-island-counter height, and seems to have inherited my desire to move walls/doorways when he walks. He loves his sister (although you wouldn't always guess it) and likes to copy her movements, phrases, and facial expressions. My kids are such a blessing to me. I love them more than I could ever explain.

 We had the opportunity to visit with all of the Van Andel relatives at a reunion in Michigan this summer. Although we discovered the horrifying result of combining Abe with the confined space of an airplane, the torture of the flight was worth the time with family. It was a special time with family and won't be soon forgotten.

Well the time has come--Abe's awake and break-time is over. Thanks for reading!

So here we are....another day of bad news. Emri had a sleep study done last week and I got the call today that the results were terrible. 8 apnea episodes an hour??!? 8?!? How have I not caught on to this? There have been plenty of nights that I have snuggled up to my little girl and listened for signs of apnea. Her O2 is dropping at night...how scary. She moves her legs a lot...why?? The pulmonologist that has read all of Emri's sleep studies wants her on oxygen at night immediately. We have to go the the ENT at Childrens and stick that dang scope up Emri's nose and down her throat...again. And we need more blood draws. I SO did not want to hear all of this.
I want to take a second to be honest...because being honest is only fair. It's only fair to anyone who reads this blog to get the real me. 
I just read a blog post highlighting special needs moms. It talked about how so many people respond to others' difficult situations with, "I don't know how you do it." Here's the thing....in my situation with Emri, what IS the proper way to "do it"??? To be frank, I have spent my fair share of time screaming, crying, and begging God for mercy. Even the moments where there isn't any major surgery or big echo appointment going on, I still get overwhelmed...I feel like I am constantly attempting to keep my head above water. Just yesterday I parked to pick Emri up from school and saw her class walking back from the playground. My eyes scanned the group for my tall, skinny girl...but then I saw her. She was the one being wheeled back to the classroom in the stroller. It might not seem like a big deal...but my head was spinning and my heart hurt. Did she feel sad that she couldn't walk all the way to the playground?? Was she looking at the kids walking in front of her and wondering why she wasn't with them?? Did she feel left out? The emotional part of me is drained. Always. 
I think about the verses in the Bible that talk about being anxious and I wonder, "God, HOW??" How am I supposed to sleep now...knowing that Emri quits breathing 8 times an hour every night??? I lay next to Emri and I can hear her extremely loud heart murmur...a constant reminder that her heart isn't healthy. Her heart is working so hard to counteract her leaky valves. It makes me feel nauseous. I have forgotten to give Emri her medicine a few times in the past two weeks. What mom just forgets to give her daughter life saving heart medicine??!? The guilt I feel every time I forget is severely overwhelming. 
So "how do I do it?"  I don't have a choice. I "do it" but I never feel like I am "doing it" well. I fail Emri, I fail myself, I fail God. How do I cope??? I cry, I talk things out, I write, and I PRAY. I am always praying for peace...for strength...that I am able to raise Emri to be strong....when I feel so weak. 
Please pray for us. Pray that tonight when we put that dreaded nasal canula in Emri's nose that she somehow musters the strength to accept it and fall asleep. Pray for healing...maybe the next sleep study will be better. Pray for true joy for our family...not just shallow happiness...but joy in the Lord. Pray for Brett and I...we love each other so much....but having a constantly drained wife can't always be fun. Pray for energy and strength for me to be the mom that God wants me to be for Emri and Abe. 
There will be a day with no more pain or tears...we know this and cling to it. But right now there is so much pain, and way too many tears. 

6 months in one post!!

Well regardless of the fact that our life has been moving at record pace for the past 6 months, this blog has most definitely seen better days. My apologies, dear blog, for leaving you in the dark for such a vast expanse of time.

Thanks to my frequent flying on facebook, I believe I will be able to jog my memory enough to summarize the last half year. Here we go.

A few big events worth mentioning: 

-Abe survived a fall down the stairs. He immediately attempted to do it again.

-Emri, (with no reasonable explanation with the exception of answer to prayer) started eating primarily by mouth instead of through her g-tube.
-Abe turned 1 on October 29....he had his cake, smashed it all over the place, and ate it too. SO hard to believe our little "baby Abee" is no longer a baby!

-Found out that Abe, at 1, weighed 3 pounds more than his 3 year-old sister. 

-Brett turned 29!! 

-My sister and her wonderful man were married on November 30. Emri was the flower girl and WALKED tall and proud down the isle. It was, of course, an incredibly touching moment for our family. Abe was the ring bearer...he only dropped the box once and stopped mid-isle to visit his grandpa. It was a very special day that will not be soon forgotten.  

-Abe survived a fall out of a home depot cart...onto cement. Worst. Mom. Ever.

-WE MOVED INTO OUR HOUSE! December 6 was the day we moved. It was extraordinarily stressful and incomprehensibly blissful all at the same time. Our upstairs remains, to this very day, a "junk zone", but once in a while we have ambitious thoughts about going up there to organize it all. Oh. And the slide is awesome.
-We got a puppy named Jack! Long story short...we have always wanted our kids to grow up with a dog. We wanted him to be well trained-so I took him to "grad school." It was a little embarrassing...but he graduated. We love him dearly...but he is still a work in progress.

-December 20-We got SNOW! Emri wanted to go outside and build sand castles. 

-December 24-We had our first official Christmas with our little family of 4. Last Christmas was spent at Johns Hopkins Hospital with Emri, who was recovering from her spinal rod surgery. We treasured the time spent together. 

-December 25-Brett's two brothers and their families flew here from Denver! We had a great time celebrating Christmas together and Emri LOVED the time spent with cousins. It was a special time for the Van Andel family!

-Emri had her very FIRST day of school on January 13th!! She loved it then and continues to love it now! She jolts out of bed to get ready for school and, without fail, has a giant grin on her face when I go to pick her up. She has a personal aid to help with her stability, which puts my heart at ease dropping her off. 

-I turned 26. Bring it on!

-Found Abe in the dryer, laughing hysterically.

-We watched the Seahawks WIN the SUPERBOWL.

-We spent a night at Children's in early February due to Emri getting so sick with a virus. She did great and recovered quickly after. Emri got an echo while we were at Children's showing no additional growth of the aorta and the same amount of mitral valve leakage as the last echo. Thankful for this!!

-February 23 was the first day of our Lynden snowstorm!! We had a great three days watching it pour snow. We got like 2 feet! The kids made it out once...for a total of 3 minutes.

-Abe achieved "double ear infection" status!
-Emri and I had the privilege of speaking to a group of nursing students at Skagit Valley College about marfan syndrome! Emri got super spoiled with a TON of doc McStuffins gear...including her very own doctors coat. 

-Abe rammed the side of his eye on a window ledge (all according to Emri as the sole witness) and gave himself a nice black eye.

So there you have it! 6 months summed up into 20 bullet points. Despite acquiring plenty of pesky viruses this winter, Emri has stayed away from the hospital all but once...which we have been so thankful for. She continues to blow us away with her strength and her gigantic personality...she just loves life and doesn't stop singing about it! I have determined that Abe wakes up every morning thinking, "how am I going to give my mom a heart attack today???" He is our little stunt man, continuously looking for new ways to injure himself.

We love our God and continue to strive to serve Him in all that we do, say and think. Our latest memory verse that we have been working on with Emri has been Psalm 19:14.

"Let the words of my mouth and the meditations of my heart be acceptable in Your sight, O Lord, my Rock and my Redeemer." 

Always a good verse to have fresh in your head. 

And now, it's time for bed. It was nice writing a blog that contained no surgery drama and only one hospital stay! Praise the Lord for the health and strength that He has given us over the past 6 months! Thanks for reading!