Sunday, July 5th

Happy 4th (a day late!). We have had a very stressful week, but I wanted to blog ASAP about Lexi's EMG results.

Lexi's test went well last Monday. The entire procedure took about 3 hours from the time they did the prep until she was out of recovery. In total, they stuck 18 needles in her face but were not able to test her tongue this time. The neurologist called on Wednesday with the results. The good news is that Lexi does not show any signs of regression- meaning she's not losing any facial nerve function. The results are measured in terms of waves. Lexi's waves are bigger, showing more signs of regeneration (this is great news- definitely the right direction!). However, there are not as many waves as their were in January (meaning the regeneration seems to be slowing down some- not such good news). At "best guess," the neurologist thinks it could be another 12-18 months for Lexi's facial nerve damage to "heal," if she ever does regain full control. her forehead looks good but her right side of her face is still considered severe and the left side is moderately severe. Finally, the neurologist thinks that since there is some healing with Lexi's facial nerves and her swallowing does not seem to be improving as well, he feels there may be some additional damage with Lexi's throat/swallowing mechanisms. He has recommended that we take more evasive action with ENT and GI and do some additional procedures to find out exactly what is happening with her swallowing. So, to some up, we got some good news, but not as great as we were hoping for:-)

From a cardiology standpoint, the new cardiologist we saw in Cleveland does not feel anything needs to be done immediately with Lexi's heart (thank the Lord!). They are more concerned now with her SVAS (Supra-valvular aortic stenosis), which is a new narrowing found right above her aortic valve. They are also watching the blood vessels around her heart as the left side is narrowed. If blood vessels on both sides of the heart are too narrow, this can become fatal. The cardiologists would like to schedule an MRI for Lexi in the fall to be certain everything looks ok.

On a side note- our family is finally settling in to our new home and we are excited about the extra room for Lexi and the twins. It has been very difficult to unpack with 3 little ones running around. We are anxious to get Lexi back into her nursing and therapy routine. Lexi's feeding tube got pulled out this weekend (which completely frightened me!). Thank God for our nurse that came over at 5pm on July 4th! He was able to put a new tube in Lexi and avoid a trip to the ER.

Prayer Requests:
Please pray for Lexi's facial nerve damage. Pray that we are able to see drastic improvement the next few months. Pray for wisdom for the neurologist and all doctors involved in her care. We will be seeing 3 doctors in August (endocrinology, ENT and GI) and 4 in October (neurology, cardiology, Opthomology and a feeding specialist).

Pray for Lexi's heart. Pray that the doctor's do not find narrowing in her blood vessels.

Pray for our family as we work on getting established in our new home.

Thank you again for your continued prayers. Lexi is getting so big- we will post some new pictures on the blog soon!