Friday, August 29, 2014

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!

Monday, August 18, 2014

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, 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 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 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!