Friday, April 24

I apologize that it has been so many days since we last blogged. Things have been extremely busy for us the past 2 weeks. But, I know many of you have been asking how Lexi's swallow study went last week and appreciate all the prayers and questions!

We went to Cleveland for Lexi's swallow study on April 15th. Cleveland, once again, did a fantastic job. They actually let me feed her during the study since I am most familiar with Lexi and what she prefers. Unfortunately, Lexi aspirated 2 of 25 times on thin liquids. While infants aspirating isn't all that uncommon, Lexi did 2 silent aspirations, which means she did not cough or show any signs of distress. She doesn't feel the liquid going into her lungs. This is obviously very dangerous and discouraging. HOWEVER, Cleveland did a very thorough job. They then allowed me to give her nectar-thick formula via bottle and she did great! We then went to applesauce and then back to necart-thick formula. Lexi didn't aspirate on any of these! Over all, she did 50 swallows of nectar-thick and passed! Yeah! This means we will be able to resume oral feeds with some thicker substances. There is actually a gel pack out there that you add to formula and it makes it just the right consistency. We will begin this process next week with the speech therapist.

We were also able to see GI last week again and Lexi seems to be doing well on her new medication. The doctor also changed out her mic-key to a shorter one. We will be going back to Cleveland in 3-4 weeks.

Lexi had a cardiology appointment today with a doctor from Toledo and everything looks pretty good! She will have an echo-cardiogram again next week which will give us a lot more information as to how her 2 narrowings are doing.

Finally, Lexi has been working very hard on her therapies. She is developing torticollis, which is a tightening of the neck muscles. Lexi keeps her head tilted to the right (almost as if always touching her right ear to her right shoulder). We didn't think a tight neck was too big of a deal, but the Physical therapist said that, if not corrected, it can actually cause facial deformities in infants. Having more weight on one side of the head due to the tilt causes infant's heads to become mis-shaped and eventually, deformed. So, needless to say, we are hitting Physical therapy very hard as Lexi has enough strikes against her! We are working with insurance to purchase 2 different therapy forms for our house- a wedge for her to sleep on at night to help with reflux and a chair to help her sit more upright during feeds. Unforunately, insurance companies make everything very lengthy and drawn out! A simple request takes tons of papers and weeks to get approved!

Prayer requests:
Pray for Lexi as she begins to work on feeding again. Pray that we have much success this next week!

Pray for Lexi's Physical therapy sessions and that this torticollis will get fixed very soon!

Pray for me as I work with the insurance companies to get her feeding gel and both therapy forms covered so we do not have to pay for them out of pocket. (The wedge is $400 and the chair set is almost $1000!)

We hope you are all enjoying the spring weather! Thank you for your continued help and support!