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~
I'm glad to hear Emri's pulmonologist appt. went well! Yay for good lungs! I'm sorry to hear that her spine has worsened. Has anyone mentioned casting? I don't know if it has a better track record for Marfs or if it would also impact lung development. I can send you an article with more info if you want, just let me know. Sending prayers for good news from the eye doctor tomorrow! :-)
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