Saturday, April 4th

Here is our update on Lexi for the first week of April:

We have had a slow week with Alexis. It seems that we have reached a plateau with her and her therapies. This is to be expected with anyone in therapy, but it is difficult to be patient and see such slow progress. The physical therapist wasn't able to come this week, but Lexi is still not able to hold her head up all the time. We are working with her as often as we can, but the weeks spent in the hospital have put her very behind- holding her head up, however, is the basis of additional milestones- sitting up, pushing up, crawling etc.

The speech therapist was able to look at her swallow study. The good news is that she was not able to see any aspiration, which means it is a micro-aspiration and was very small. However, Lexi is unfortunately doing silent aspiration, which means she is not showing us any signs of distress when she aspirates. The therapists are very reluctant to allow Lexi to take anything by mouth because of this. Again, this is very frustrating! While we have been assured that Lexi not being able to eat by mouth is not permanent, it is the one way we are able to really measure her progress.

Lexi is doing a little better with her new mic-key button but still cries during her feeds. On Tuesday of this week, her pump stopped working so I was very panicked! Thankfully, the health company was able to send a company down from Toledo to deliver us new pump and the NICU doctors at BVH were helpful in talking me through a syringe feed. We saw the Neonatologist on Thursday for Lexi's 5 month check-up and she is a whopping 12lbs 8 oz and 24 inches long! She is in the 5% range though so we'll take it!

Finally, we are going to see 4 doctors next Wednesday at Cleveland Clinic. We have been extremely happy with every aspect of the hospital! The endocrinologist was not available until July, but he agreed to add Lexi to his case load this Wednesday! So, we will begin with GI at 9am, followed by Endocrinology, Opthomology and finally ENT (ear, nose and throat) at 3:30pm. Lexi has some issues with her esophagus and also has a very raspy voice. The speech therapist is concerned she may have nodes on her vocal chords or there may have been some damage from being on the ventilator. We are VERY excited to see all these new doctors and get a new perspective on Lexi's care. We are also thankful that the scheduling department was able to get all 4 appointments on the same day.

Prayer requests:
Please pray for Lexi's therapies. Pray that she makes huge strides in the next few weeks so we can be encouraged! Pray that Jon and I find time to work with Lexi as often as possible!

Pray for Lexi's swallowing. She has pooling in her throat in 2 different spots and this is concerning. Pray the ENT or GI doctors are able to give her some help with swallowing!

Pray for Lexi's appointments on Wednesday. It is going to be a very long day, especially for Lexi, as we will leave at 6:30am and return around 7-8pm that evening. Pray for traveling for me, my dad and Lexi and patience for little Lexi as she will be poked and prodded a lot!

Finally, we have taken several new pictures of Lexi the past few months so I hope to get them posted sometime next week! I'll post it when we do!