Thursday, December 23, 2010

THE day of doctors.

11 doctors...11 hours...sleep needed. Forgive me if my writing sounds sleepy...but today was a day where rest for the weary was nowhere in sight. We awoke well before sunrise to prepare for our day of doctors. The day included appointments at 8, 9, 10, 11:15, 1, and 2:20. The 8 and 9:00 appointments were in the Occupational therapy clinic. We first met with our regular occupational therapist and discussed a few new methods of getting Emri fat, and took a look at her overall social/moter development. Emri's one smart cookie when it comes to social skills and is right up there with all those fat babies her age:) She DOES have delayed moter development which is to be expected in Marfan's babies due to their weak muscle tone. It may take Emri a year to be able to fully sit up on her own, or even 2 years to learn to walk on her own, but we are JUST fine with her taking her jolly old time. It wouldn't bother me a bit if Emri didn't walk till she was 7, as long as she is still here with me, in my arms. Every day Emri captures more and more of my heart. I didn't even know I had this much heart. I ache if I think for even a second about Emri leaving me. I know, as children of God, we all go HOME in his time...but I pray every day that God protects her little heart and lets me keep her for quite some time. 
Our second appointment was with a splint specialist. She constructed some splints to help Emri's thumbs stay out of her palms. She has her "night splints" to wear at night, and her "day splints" to wear at least 4 hours every day. This will continue until her thumbs more naturally stay out of her palms and until she is able to grab things normally, without her thumb tucked in. 
10:00.....What was the 10:00 appointment? OH! This one was actually pretty exciting. We got to meet a world renowned geneticist and her Australian sidekick. It was actually quite a humorous scenario as they decided to place bets on weather or not Emri's skull bones were fused or overlapping. The world-renowned geneticist, Dr. Hall, was amazing. She couldn't get enough of Emri and had many delightful conversations with her. She was very encouraging about Emri's prognosis and very much supported our decision in getting in with Dr. Dietz. She and him are buds...and she likes his work too. The Australian sidekick was also a geneticist, but he just pretty much nodded in approval to everything Dr. Hall said and mumbled a few things that I didn't hear due to my overwhelming desire to listen to only his accent. 
11:15 was rehab. I didn't really know the relevance of this appointment, mostly because I was not aware of what "rehab" really meant in regards to Emri's situation. The doctors assured me that it was indeed relevant and that they would be taking care of things such as making sure Emri learns to crawl, walk, run, and skip properly. They were somewhat helpful and Emri enjoyed her time flirting and smirking at her handsome gentlemen doctors.
We got 20 minutes after this appointment to get lunch and discuss how insane having 6 appointments in one day actually is. 
The 1:00 appointment was just getting the measurements of Emri's heart with an echocardiogram. Needless to say, Emri was a little wiped from her morning and slept peacefully right through the entire thing. I was laying next to her and may have taken a cat nap myself. After her echo, we skipped merrily over to get our flu shots while awaiting the cardiologist appointment.
We met with Emri's cardiologist, geneticist, and genetic counselor to discuss the results of the echo. In summary, Emri's heart is still dubbed as "stable" but has grown along with her. We were very thankful and happy to hear that the root hadn't largely increased. They did officially diagnose her with MVP (mitral valve prolpse) but at this point, it's not leaking enough to make any big moves. This may be something that, in the future, has to be replaced with a mechanical valve, but for now, nothing needs to be done. We did tell the doctors that we are planning on meeting with Dr. Dietz and they were somewhat supportive. They are on the skeptical end of using the drug losartan, and want to have the main trial finished before giving it out to their patients. Dr. Dietz seems to have a lot more confidence in losartan so it will be interesting to hear what he has to say about it all. Overall we feel like the doctors in Seattle are on the conservative end of the spectrum, while Dr. Dietz and his crew stand on the more liberal side. We just want a healthy baby...that's where we stand. We truly feel that God led us to finding Dr. Dietz and that he holds valuable knowledge and information. It is difficult to feel like you're "siding" with a certain doctor...but as a parent desiring the best for your child, you kind of have to. 
Overall, we feel overwhelmed, happy, informed, confused, and supported after this so called "day of doctors." We have a lot of information, options, and decisions to sort through and we pray that God leads clearly in the direction he wants us to go. In the midst of the chaos, our little Emri now sleeps peacefully in her crib-- her little hands in plastic braces, drool running down her cheek, and a lullaby in her head. It's all SO worth it. What a blessing.
Thank you for the prayers...December 8 is now over and January 14 looms ahead. What a season in ours lives and what a JOY in our hearts.  

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