Tuesday, March 17th

Happy St. Patrick's Day! I was just at a Mother's of Multiples meeting and was slightly scolded (and reminded) that I have not updated the blog. We do appreciate those of you that check this regularly as we still have a long, up-hill road to climb with Lexi.

We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.

We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!

Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!

Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.

Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.

Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.

Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.

Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!