August 6th- Relaxing Summer is Over

We just finished a crazy week with Lexi- 16 appointments! We are so glad it's over! Here are several updates:

We have been taking Lexi to Fostoria twice a week for Vital Stim therapy. She absolutely hates it! They now have to tape the 8 electrodes to her face and neck because she snaps them off so quickly. We have seen an increase in drooling, which we hope is a good sign that her nerves are working! She has a swallow study scheduled for September 21st to see if she is still aspirating.

We took Lexi to Cleveland Clinic for 2 days (9 appointments) this week. She saw cardiology and things checked out really well! They still want to do another MRI of her heart because they are concerned her blood vessels leading away from her heart are too narrow. But, we will be able to wait and combine it with her next brain MRI to save her the sedation process. That will be sometime this fall. We are so glad that her heart is doing so well!

Lexi also saw the allergist and completed a four hour milk challenge. They had us sit in a room and they fed her milk starting with a small amount and ending with a large amount. Then, we waited to see what happened. She passed her milk challenge with no issues at all!! This means she has outgrown her milk allergy! We are very excited to get this little peanut on some milkshakes and whipping cream! Lexi has never had ANY dairy so we'll see what she thinks.

Finally, the other "major" appointment we had was with the feeding clinic. Lexi is supposed to gain 10 grams a day. We last saw the feeding clinic in June. Since June, she has gained 10 grams TOTAL!! Ugh! They are concerned that she is not absorbing all of her food. So, we have an appointment with GI on August 25th to look at probable causes. We're going to pray that it is nothing serious.

On a side note- Lexi is making HUGE progress with her large motor. She is starting to crawl!! We are so excited! We are also making some gains with her feeding. Not as many as we'd like, but we'll take the small gains too!

Finally, we are still looking into Sensory Integration Therapy for Lexi and exploring some ways to fund the $3200 for this. If anyone has suggestions, we are open to them.
You can e-mail us at thehocansons@yahoo.com

Please pray for:
Our many appointments. With 4 therapies a week plus vital stim 2-3 times a week and various doctor's appointments, I feel REALLY overwhelmed and REALLY behind on "life" (bills, cleaning, etc). Pray for time management and a lot of strength.

Pray that we are able to find various ways to provide the $3200 for Lexi's sensory treatments. We went to Toledo a few weeks ago to meet with the team and do an "experimental session" and it went really well. We REALLY think this treatment will help Lexi but insurance has denied covering it. Pray that we are able to make the best decision for Lexi!

Finally, with all the prayer requests- we wanted to share 2 praises:
1. Lexi has been put into ankle braces called "sure-steps." She turns her ankles in when she tries to take steps or stand (pronates). So, these braces will help keep her ankles where they should be! The braces are $1800! BUT, we were able to participate in a study with Sure-step and they are covering the ENTIRE cost of the braces AND the appointments that go with it!

2. We have a family friend that is a speech therapist. She saw a post on facebook about vital stim. She works in a nearby town and has graciously worked it out that she will come to our house to do Lexi's next round of 12 treatments!! This is a HUGE blessing as taking 3 hours a day, 3 days a week is becoming too much to handle! Thank you Diane!!

Once again, thank you for your continued prayers and genuine interest in Lexi's progress.