So many things...

Ok folks, we have a lot to cover in one blog! Let's start with the Marfan Awareness event that successfully occurred on March 10th. God not only allowed us to reach our monetary goal of $3,500 for Danny, he allowed us to surpass it! We made a grand total of $5,700 from donations and auction items the night of the event and the number just keeps growing. There have been individuals who heard about the event that have been donating after the fact, and other marfan moms who have been raising funds for Danny and his mom Sarah as well. Sarah has thanked us over and over for everything that has gone on, but it is really all of you, the "donatees", if you will, that we have to thank! THANK YOU! Thank you for coming to the event and/or donating money, time and prayers for this event. It has meant more than you know seeing so many people showing so much support for something very important to us, as parents of a child with Marfan Syndrome. We are SO excited that we will be able to meet Sarah and Danny IN PERSON this summer at the Marfan conference in Chicago. Danny will get to meet and be thoroughly examined by all the "big" marfan doctors and his mom will be able to leave knowing she has seen and received care and advice from the very best! I know that this means the world to Sarah and we could not have done it without all of the support we have received throughout the past few weeks.

Brett and I had the opportunity at the event to share Emri's story so far. It felt good to be able to tell it and have it well-received by many. It was intimidating indeed to stand in front of 150+ people and share many intimate details of our life and journey with Emri, but we pray that God used it and continues to use it for his good purpose. There have been many individuals that have responded to Emri's story saying things such as, "wow, I had no idea it was that serious," or "I can't believe all the things you have been through with Emri!" To be quite honest, I felt a little relief being able to let the world know what it takes to be the parent of a child like Emri, but I also want to respond to these comments with how I really feel being Emri's mommy. I can't imagine having a more precious child. I feel more blessed than I ever have in my life to be the mother of a child so unique, so sweet, smart, and incredibly funny. That girl puts more smiles on my face in a day than I can count and I truly, honestly wouldn't want it any other way. Yes, there is a lot of responsibility involved and tough, tough days that we go through together, but I wouldn't trade a second of it. I know that everything Emri has already been through in her 21 months is shaping her into the beautiful person God intended her to be. I feel like kids that go through trials early on in their life already, learn even faster that life is a precious gift, not to be taken for granted. Emri has already been called a "wise old soul" by many, some she only just met. She is so special, such a blessing from God.
Before I move on to the next subject there is an apology I must make to everyone who drank coffee at the marfan event... Those of you who thought they were drinking decaff...you weren't. Those of you who wanted your kick of caffine...sorry- whether or not you thought you got it, you didn't. Yes, it's true-the signs were switched. Shortly after the event, while cleaning up, the gruesome discovery was made. I am not going to lie, we all shared a good laugh thinking about all the poor people that would be laying awake all night thinking they were just "over-inspired" by the whole event...I do apologize.


The next subject of matter is Emri's spine. We had a spine appointment for Emri on Thursday to check in on her kyphoscoliosis (scoliosis and kyphosis) measurements. As it turns out, they are in surgery range already. Emri's lower scoliosis curve is now beyond 50% without traction (stretching Emri for the x-ray) and 48% with traction. He kyphosis degree is still beyond 60. These numbers have grown big enough to talk surgery dates. Surgery will be in Baltimore by Dr. Sponseller. We have seen Sponseller a number of times already and have known that he would be the one surgically repairing Emri's spine when the time came. Well, the time has come. I can't say I'm trilled about it, but I know it has to be done. The big concern that lies before surgery is Emri's weight. She is still under 20 lbs at 18.7. Her appetite has been increasing as of late, so we are hoping we can completely avoid a g-tube (tube inserted directly into the stomach for feeding) before surgery. We want Emri as big and fat as possible before undergoing a serious surgery. We also want to grow Emri up as much as possible before surgery because following the initial rod implantation, Emri will need a lengthening surgery every 9 months to a year in order to have the rod grow with her spine. Anesthesia given that often isn't great for kids and we want as little of it as possible. So all that being said, we are anticipating a surgery in the next 6-9 months...although it could be sooner if we decide to combine the conference and surgery in one trip. Please pray for this.


Emri has had a heart appointment since last blog as well, and we are grateful to announce that the aorta and mitral valve prolapse has remained quite stable. This is something that we are extremely thankful for...we would really like to focus on one surgery at a time!!!




The last order of business is that...........

EMRI IS GOING TO BE A BIG SISTER!!! Yes, it's true! We found out we were expecting on Feb. 22nd and we are beyond thrilled to be able to make this announcement:) Emri doesn't quite get it yet but is correlating the word "baby" with the idea of mommy being sick. I am, once again, very sick with "morning" (haha) sickness. It lasts all day and doesn't allow room for much fun in Emri's world. Emri has watched a few more movies than I would like to admit to, but it is truly the only way to get through the day for me sometimes...poor kid! We are due November 4th, which puts me at about 7 weeks along. I would like to mention that although I was already pregnant at the event, I was NOT sick. God spared me until the very next day! THANK YOU GOD! We are very much looking forward to meeting our little sweet potato next fall and will keep you updated with lots of ultra sound pictures! We even get a 3D ultra sound this time!


So, there you have it-all the news you can handle:) Thank you once again to all those who helped with the event, supported it financially, and to those who prayed for it's success. We felt God's blessing on the event throughout the entire process. If you have already been prayerfully supporting our family...thank you. If you are interested in beginning to pray for our family, thank you also. God takes such good care of us and we are so thankful to feel so supported by so many. I hope this blog finds you all well...until next time...~Erin~

So, since the last blog, we have joined the ranks of hospital dwellers. I am sure there are a lot of you that don't know exactly what is going on with Emri, and to be quite honest, neither do we. We do have a few answers as to what is NOT going on however. 
About 3 and 1/2 weeks ago on Sunday afternoon Emri began her vomiting marathon. Within the last 3 and 1/2 weeks, there were maybe 5 days where vomit remained unseen. We visited her pediatrician 3 times before he heard the "rubbing" sound in her heart and sent us to Childrens for an emergency echocardiogram. Thankfully, the echo showed no new mitral valve regurgitation and an aortic measurement consistent with what we had seen on her last echo. We were sent home relieved and determined to get her feeling better. Unfortunately the vomiting continued and the consistent lethargy became more evident. After 2 or 3more trips to the pediatrician we were still left with no answers as to the cause behind Emri's apparent sickness. Yesterday morning Emri couldn't keep anything in her poor little stomach and I took her in immediately. Emri was sent to Saint Josephs Hospital for fluids, monitoring and blood work in an attempt to locate the vomit monster. All day yesterday Emri did not lift her head from my shoulder---no sly grins, giggles, or mischievous moves all day long. It was very troubling for me to see her this way. Eventually they took blood, got an IV in her foot and started fluids. So far, there have been no giant red flags that have come back in her bloodwork signalling something dangerous or concerning. All the high/low counts have most likely been due to severe dehydration. Today, the doctor wanted to get an upper GI tract study. The study was to see if there was what's called an "eventration hernia" making her vomit. This is a common occurrence in the marfan world and would need to be fixed with a surgical procedure. This was the worst experience in my/Emri's life yet. She had to have a feeding tube put in in order to drip the barium into her stomach so that the doctor could see her stomach and intestines. Needless to say the feeding tube was "slightly" disturbing for Emri. She screamed for a good half hour waiting to be taken to the x-ray room. We made it to the x-ray room where Emri proceeded to choke on her own vomit and scream hysterically while the "people in blue" got he x-rays they needed. It was absolutely heartbreaking. It is the most helpless feeling in the world looking at Emri, knowing that she is just longing for me to save her from the pain she is experiencing. My poor sweet little girl has had far too many similar experiences for being alive a meager 1.5 years. Thankfully, at 18 months, Emri quickly moved on from her horrifying experience while I sit here, still struggling to hold back tears and frustration. The doctor came in about 45 minutes ago to confirm that there is, indeed, no hernia or gastrointestinal swelling. We are grateful for this news, but still anxiously awaiting answers. The next step was going to be a CT scan to make sure the brain was ok, but since Emri is acting more like herself today (teasing grandpa, kissing tinkerbell stickers, and smiling ceaselessly) the doctor dubbed it as unnecessary. As of right now, the plan is to start Emri on some reflux meds, keep her on fluids through the night, take more blood in the morning, and if everything checks out normal and Emri seems herself, we will be heading back home tomorrow sometime. We would really appreciate prayers for our sweet, brave little Emri. 
I am sitting here in the hospital knowing that we are not the only ones experiencing hurt due to marfans. There are many close marfan friends in hospitals all over the place that are going through more pain than we know. We are especially thinking of Ethan as he is on day 20 in the hospital with complicated lung issues and a tracheotomy done yesterday. The hurt still flows deep with the strong moms that have lost their precious kids to marfans. I truly can't imagine. 
It is so hard to see Emri struggle, harder than I could have ever pictured it to be. It's a struggle not to question God in times such as these; seeing someone I love so much go through so much pain. As I typed that last sentence I was struck with the reminder that God himself, watched his Son suffer and die...for sinners...for me. I am praying that despite my natural sinful tendencies I am able to count this all joy, and trust in the Lord with all my heart, not leaning on my own understanding. Through these tears of pain, I am remembering to thank God for giving me the joy of being Emri's mother, despite the hard times. There is not one other object or individual in this world that can make me smile as big, or laugh as much as my little girl. I have never struggled so much as now, but I also have never been happier. She lights up my life in an unspeakable way. Thank you God for blessing me with such a beautiful child and for loving your sinners enough to watch your own son die on a cross. 

Life....throws a few curves, don't it? I'm angry. I'm heartbroken, devastated, anxious, and to be quite honest-just hate marfans.  Klaire, a precious little 9 month old, passed away Saturday night from complications due to marfans. She left her dad, mom and sweet twin sister behind, who, I just found out, was admitted into the hospital yesterday because of marfans. Ethan, an intelligent, brave 9-year old with marfans that we met at July's conference, is in the hospital with a collapsed lung, not breathing on his own, and is now dealing with many painful complications from it...all because of marfans. This is only 1 out of many, many hospitalizations that Ethan has already experienced in his 9 years of life. Because of marfans, little Brody bear is recovering from his first open heart surgery at the fragile age of 1. Danny, our other handsome little one year old from the UK has spent his share of time in the hospital as well because of...you guessed it---marfans. 
I desire with all of my heart to have just one day where I don't have to think of or hear the word "marfans". But that's not going to happen...ever again. I am going to continue hearing it ring loud and clear at doctors appointments, in phone conversations, in emails, on facebook, and in my own head. I will continue to see this destructive disease hurt, crush, and devastate people I love and care about. And I will see it manifest itself day after day in my sweet Emri's fragile little body. I really hate marfans. It's tough to keep a sunny outlook on life and maintain a good attitude while all of this is taking place. There are so many individuals so close to my heart that are all in pain; physical and emotional; because of this ugly disease. As of late, trusting in God's goodness has been a struggle to say in the least. I am overcome by grief, fear, and bitterness.
I often find myself tearing up when looking at a healthy, glowing child, just wishing and yearning that Emri could have that. I struggle seeing pictures of a newborn baby being cuddled close by his/her mom and just can't help but remember the horrifying events that took place after Emri was born. I didn't get that "perfect" birth experience. Not even close. Emri didn't cry when she was born because she wasn't breathing. Brett didn't get to cut the cord because they were so rushed to resuscitate Emri...because of marfans. It feels unfair. It feels cruel. But it's life. It's in HIS plan. 
As a mother with a child with marfans, I am struggling. I am hurting with all the rest of my special moms. I am praying that God gives us a break and lets us breathe. That He grants us His peace and gives us grace. That despite all of the horrifying events taking place, we can all lean on him and put our trust in His plan for our lives.  
Please pray for these precious kids and their brave mommies..

Cassie

Danny

Ethan

Jonah S.

Brody

Jordyn

Julian

Klaire and her twin sister Kylah

Our angel, Klaire

Our angel, Jonah

     

Baltimore...round 2

Yesterday, around 2pm, Brett, Emri and I arrived back, safe and sound in our new home. My wonderful parents took Emri to play at their house while Brett and I slept for a good 6 or 7 hours. THANK goodness. I don't think I have felt that tired since the week Emri was born. 
Baltimore was....lets just say "different" this time around. Emri is of course older and declaring her independence...loudly. The plane ride to Baltimore proved to be somewhat trying this time. Emri doesn't exactly sit still anymore and vocalized her discontent in a rather intolerable fashion. By the time we arrived in Baltimore, Brett and I were exhausted and ready for bed. Emri, however, was filled with joy to be off the plane, putting a halt to our dreams of crawling into bed and drifting off into a beautiful night of much-needed sleep. 
We did eventually get sleep and woke up to enjoy our Saturday. We walked around Baltimore, enjoying the 40 degree difference in weather since the last time we visited. We saw Baltimore's terrific aquarium and enjoyed the first 45 minutes of it until our little munchkin decided she had seen enough. 
Sunday we gave ourselves plenty of rest and spent time exploring the city some more. We did a lot of walking  both days-I think enough walking to burn off the 3 or 4 pumpkin spice lattes I consumed within them:) 
Monday was Em's spine x-ray and consultation with Dr. Sponseller. The x-ray was disappointing yet not unexpected. Emri's spine is getting worse very fast. Fast enough that she will soon be a very young recipient of a spinal rod. We were really hoping that we could grow Emri up a lot more before she had spinal surgery, but her scoliosis is telling us otherwise. Emri's scoliosis has gone from 13 degrees last January, to 26 degrees in July, and is now at 36 degrees 3 months later. That's only speaking of her scoliosis. Her Kyphosis measurement (the bump on her back where her spine bows out) is now at 63 degrees. 
We were less than thrilled with the news that Emri will most likely need a spinal rod around 3 years old, or perhaps even before, depending on how her spine progresses. Consequently, our next trip to Baltimore will be for her surgery. The surgery includes attaching a rod along the entire spine with screws and bolts and lengthening it yearly as she grows. This means Emri will be for sure having a once-a-year surgery until she stops growing. 

Tuesday was the echo-cardiogram and metting with Dr. Dietz. The echo showed that Emri's aortic root had expanded a couple millimeters. This, also, was not the news we we hoping to hear. We are thankful that it wasn't a large growth, but we were really hoping that the losartan would completely stop the growth of the aorta. The good news is that the mitral valve prolapse is still minimal and we hope it stays that way! 
We met with Doctor Dietz to discuss all of our and his concerns and it was, of course, very informative. Because of the aortic growth, Dietz changed Emri's losartan to irbesartan. This is a medication in the same class as losartan but can be given in higher doses. Dietz has given it to many marfan patients where losartan hasn't quite done the trick. We will be switching to irbesartan soon and taking it along with atenolol (blood pressure lowering medication) in hopes that Emri's heart will stabilize and completely stop growing! 
There's the news folks. It was a tough trip. Not only because we didn't get great news, but also because there is so much going on in our marfan world right now. Emri's friend Brody was in the hospital with pneumonia and is now in heart failure. Brody and his parents are flying to Hopkins tomorrow and Brody will have emergency valve repair surgery on Monday. Brody is a couple months younger than Emri, so heart surgery sounds a little intimidating to his mom and dad. 
Klaire and Kylah, a pair of twins less than a year old with marfan syndrome, are also in heart failure and will need surgery very soon. 
Danny, our little friend from the UK, just underwent glaucoma surgery and is dealing with a plethora of health concerns due to his infantile marfans. 
Ashley Hood, a mom I am friends with on facebook, just last week, lost her 7-month-old son who also had marfans. I can't even imagine. 
Needless to say, there is a lot of stress, sadness, and heartache that I read about daily in my conversations with my wonderful group of marfan moms. 

It has been difficult to keep my head up lately. The only way I can is when Christ gives me the strength. Satan has been working hard lately to destroy any feelings of peace or contentment I may have. I have been feeling a little angry, utterly defeated, and completely overwhelmed by everything going on. I am praying for peace, energy and help in trusting that God is working for our good. I have been thinking on a verse I read right before our trip to Baltimore. It is Hebrews 4:14-16. 


"Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." 


Beautiful, yes? 
Jesus went through it all. God GAVE up his only Son. He gets it. 


Here's another, more familiar verse that I've been dwelling on. James 1:2-4


"Count it all joy, my brothers, when you meet trials of various kinds, for you know that testing of your faith produces steadfastness. And let steadfastness have it's full effect, that you may be perfect and complete, lacking nothing."


I can't, on my own, choose to be joyful in these kind of situations, but I can pray that God grants me His grace and gives me the ability to be joyful through it all, knowing that in the end, steadfastness will come. 


I love my little Emri more than I can possibly explain. She brings an immeasurable amount of joy to my life daily. It hurts so bad to know how much she will have to overcome and defeat, even in the first few years of her little life. But I know what to cling to, and what to pray for in order to be content and receive joy through it all. You can bet that this is what I will be teaching Emri as she grows and questions the trials she is facing. I thank God for his promise to grant us mercy in our time of need...if only we are willing to draw near to the throne of grace. 

Spine update

I know I said a long time ago on facebook that I would update you all on Emri's lung and spine appointments and I am sorry it has taken this long! This whole "fixing the house" thing is taking a lot out of us! We are, however, getting close to move in day! Hopefully by the end of this month or beginning of next we will finally be IN OUR HOUSE! We are very excited for this and I can't wait to post before/after pics:)

As for Emri's appointments-they were a little bitter-sweet this time, perhaps a little more bitter for me. We had a Pulmonologist appointment that went smoothly. Since Emri's sleep apnea has cleared up we only need a precautionary lung check up every 6 months. Emri's lungs sounded healthy and strong and we are so thankful for this. There are a lot of individuals with marfans that deal with lung issues, but so far, Emri's have remained quite healthy. Emri's spine however did not look near as promising. I, as her mom, had a feeling that it had gotten worse, but I wasn't expecting it to have gotten as bad as it has. Emri's scoliosis went from 13 degrees 6 months ago to 26 degrees now. That is a big, scary jump. We know that a spinal rod is in Emri's future, but we were/are hoping that we can put off surgery until her lungs are more fully developed because we do NOT want to interfere with lung growth. The orthopedic surgeon in Seattle does not want to interfere with Emri's physical development by having her wear a brace. There isn't a lot of proof that a brace really works anyway. We are still thinking about weather or not to try it out and we are waiting until our next trip to Baltimore (October 21-26) to make a decision.

Other than all of that, we are doing well-Emri is happy and developing QUITE the sense of humor:) She is army crawling all over the place and trying so hard to get up on her hands and knees. She has also been trying to pull herself up to a standing position-but the chicken legs give out pretty fast. She is working so hard to gain strength and doing a great job. We have an eye appointment tomorrow, so we are hoping and praying that goes well. She may need a larger prescription, but we will just have to see. Thank you for those who continue to pray for our family. God is taking very good care of us. ~erin~

We are now Marfan Experts:)

Wow. Brett, Emri and I just returned late last night from the 30th annual National Marfan Foundation conference in Portland, Oregon. We are overloaded with information on Marfan's and overwhelmed with thankfulness for the people we met and connected with at the conference. Let me start from the beginning. We headed down to Portland Wednesday night and made it safe and sound to my Aunt's house (THANKS Aunt Hilly:) in Beaverton, OR. Thursday morning was Emri's Echo at Shriner's Hospital for Children. We had to wait till Friday morning to find out that Emri's echo is once again STABLE! Her average aortic measurement ranges from 21-24mm which the cardiologist at Shriner's informed us is the standard size of an adult aorta. Her aorta is big, but as long as it remains stable, no action is required. "Stable" has become my new favorite word! We learned at the conference that surgery becomes a reality when the aorta of a child or adult reaches 45-50mm. She still has mild mitral valve regurgitation, but it has not progressed enough to enlarge her heart which is when it becomes an issue. Dr. Cameron, the heart surgeon from Johns Hopkins, spoke at the conference all about aortic root replacement and valve sparing/replacement operations and we now understand more about the options we have if surgery ever becomes a necessity. We had the opportunity to speak face to face with many of the worlds leading doctor's and surgeon's in the realm of Marfan syndrome.


Meeting and connecting with other individuals with marfan's or those parenting a child with marfan's was probably the highlight of the entire conference. It was so refreshing for me, as a mother of a child with marfan's, to speak with other mothers that have gone through so many of the same emotions and frustrations that I have trying to attain information and find the best care for our children. Brett and I had the opportunity of connecting with parents that could let us in on the struggles of older children with marfan's and the frustrations they have with other kids and siblings because of marfan's. We became especially close to one family in particular that have Ethan, a 9-year-old boy with marfan, and Christopher, a 7-year old without it. They too had never heard of marfan's before Ethan was born. Emri and Ethan are both in the more severe catagory of marfan's which is why I feel our families connected easily. The Johns' were an amazing family and Brett and I were both inspired by their desire to make things the best they possibly can in their situation. Ethan and Christopher were very sweet brothers and some of the stories their mother told me about their love for each other melted my heart! We will be staying in contact with them and can't with to see them at next year's conference in Chicago! I also FINALLY got to meet with a person that has been a mentor for me throughout this past year-Maya. I was so excited to finally meet Maya, Mark and their handsome boys! We ran into many other people that I have been connected with throughout this past year including Alix and Traci; moms of a precious little girls that remind us so much of our little Emri. Alix organized a huge run this past year, raising over $40,000 for the NMF! It was such a blessing to finally get to hang out with and talk with these wonderful, inspiring families and individuals!



Emri made a new friend named Ashley at the conference. Ashley is a teen with marfan's and actually just two months out of heart surgery! Throughout the conference Emri and Ashley became pretty good buds. It was very fun to see them interact and know that in the future Ashley could potentially be a mentor for Emri as she gets older and has to deal with the realities of growing up with marfan's.




All in all, the conference was an absolutely amazing and eye-opening experience. I was reminded again that marfan's is nothing to take lightly. I struggled a little with seeing a lot of kids and teens that didn't necessarily have a severe form of marfan's like Emri. I have learned that there aren't many individuals with marfan's that exhibited all the signs of the disease at birth. Emri deals with so many issues already as a baby, and that is sometimes hard to swollow. Many people at the conference had a hard time even achieving an actual diagnosis because they didn't exhibit enough signs of marfan's to be officially diagnosed. Emri has it all from the long fingers and crooked back to the mitral valve prolapse and severely enlarged aortic root. As Emri's mom, I know that the road ahead will be long and bumpy and it a lot of times is painful just to think about the things Emri may be faced with as she grows older. Thank goodness we have a God who promises us that it is all for the good of those who love him. We will struggle here, in this life, but can always look forward to eternal life with HIM in heaven, where we are promised life without pain and an eternity with not one tear.

"The LORD is the everlasting God, 

   the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. ²⁹ He gives strength to the weary and increases the power of the weak. ³⁰ Even youths grow tired and weary, and young men stumble and fall; ³¹ but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40. 28-31

She's one!

Well folks, we officially have a one-year-old. She is now, according to babycenter.com, a full blown toddler. A TODDLER! Crazy times, these are. Looking back to a year ago June 8, words cannot begin to describe the emotions that take over. Our precious Emri Simone has brought us an overwhelming amount of joy this past year. Yes, a hefty load of stress, tears, and pain accomplanied the joy, but it only makes us that much more grateful for the beautiful gift God has granted us in Emri. Throughout the year, Emri has slowly been revealing her silly, joyful and stubborn personality to those around her. She is quite the little comedian and tremendiously social...don't know where she gets that from! We had the privilage of celebrating Emri's one year of life with friends and family in our new backyard! We are not officially moved into the house yet, but the backyard is open and ready for business! It was a fantastically sunny beautiful afternoon and we had a great time celebrating. Emri seemed to sense that the day was all about her and had no trouble at all enjoying every second of it.
We have been working vigorously trying to get the house ready to move in. Of course there was more work than previously anticipated and as a result the new tentative move in date will optomistically come at the end of July. I can't wait until I can post before/after shots of the house-it has changed pretty drastically already! Brett drives directly from his long day of work to work at the house-he has been dubbed as the energizer bunny. We are both a little overly excited to finally get into a home of our own!!
It has been a while since I have last blogged which I think can be taken as a good thing. Emri's appointments have been fewer and farther between which is a welcome relief from the previous appointment packed few months. She DID have a repeat sleep study and the results came back much better than the first test! She no longer has to be on Oxygen while she sleeps (I am not going to lie, she hasn't been on it very much anyway...how do you keep a nasal canula on a one-year-old?!?!?!!?). Emri's next echo will be at the National Marfan Conference that we are attending in Portland next weekend. We are hoping and praying that the results come back as positively as last time! We are excited to attend the conference and eager to absorb as much knowledge as possible about marfan syndrome and all it accompanies. As for future appointments, Emri has a pulmonary checkup, spine traction x-ray and Orthopedic followup scheduled for August 12, and an eye appointment for August 25.
Friday, July 1st, the Lord decided to call Brett's Grandma Van Andel home. Brett's dad got to be there when she passed, which was a blessing. She will be greatly missed, but we can rejoice knowing she gave her life to Jesus Christ and is now being rewarded in Heaven!

We had a wonderful fourth of July celebrating at Fairhaven park in Bellingham. Excellent food, games and sunshine was follwed by a magnificant firework show! We wondered how Emri would react to the fireworks and she absolutely LOVED them! It was precious the way she snuggled up with Steph and I and marveled at the bright lights in the sky. I know it sounds silly, but watching Emri sitting in awe of the firworks stirred a little emotion from me. I am so very blessed and am in awe myself of the beautful life God has given me. Our sweet little girl; the one doctors once informed us had a 50% chance of making it past one; is thriving, smiling and loving life. I am so grateful and so in love.