Dear Prayer Team,
I hope as your summer finds leisure time, refreshing, and time with the Lord that the Spirit would call to mind Anna and her many needs. Thank you for your burden of prayer for her and us!!! Pray with us as we navigate some pivotal things. We have prayed that the Lord would reveal to us the things we need to do to bless Anna with the best care for all her needs. God impressed on us a few things:
1. Therapy in the home has become challenging considering the homeschooling and everything else that goes on. The days play out as either Anna gets all our attention or we set her up with a toy or device and check in every 30 minutes, we want to strike more of a balance. We have been doing this for about 6 years now with probably 2 dozen different therapists. Pray that the Lord would direct our steps to find a school that we would trust and love to drop her off at a few of days a week, or if we should hire a paraprofessional and have them take her a couple of days to the various therapy clinics. We are not looking for classroom integration school programs as that has become the most popular model. She experiences this at church and at Bible study each week. the two school options are a well reputed School for the Blind
2. Therapies. We feel plateaued and stagnant in therapy. God bless Anna who always tries and engages her therapists, but much the same stuff happens week after week. Most of it is good but not so challenging.
-in PT pray that we would see more sit to stand exercises, trunk control, and gait trainer usage.
-For speech may the Lord direct us as Anna has been doing the eye gaze device almost exclusively for close to a year without increasing her ability to operate it. Perhaps in the clinic, or at the school for the blind there would be more experienced teachers of the eye gaze devices) the same thing with her eye gaze device. Or maybe the Lord wants us to use speech therapy more for tongue and mouth stimulation to try introducing food orally again.
-OT we lost our excellent therapist in May and have been without one since. We are on the waitlist for another. This week Anna, mom and the other kids are at Art camp. Lindsey is doing one on one Art with Anna engaging her much like an OT would.
-Hippo therapy, (horseback) we spent 6 weeks getting Anna back into it with much success. The orthopaedic surgeon said this was the best therapy for Anna regarding her hips and trunk control. Pray if we should recommit to an 8 week session which is 1K out of our savings. Or if God would open the door to our old hippo place in south denver that accepted our insurance but is an hour away.
3. Upcoming procedures, medical treatment and surgeries.
-Pray for our sleep study on monday night the 27th of june. The strategy for this one was to see how Anna does without breathing assistance. However, we received an email stating that our doctor resigned. Pray for a wise replacement dr. able to be on board with our treatment strategy. Pray that Anna would show great ability to keep her lungs open while sleeping without the use of the BiPAP machine. That the Lord would get the boast as they remove the diagnosis of chronic atelectasis from Anna. She has been sleeping so well, keeping her Oxygen saturation levels up, managing the saliva and mucus in her airway, and remaining asleep during the nights ever since we stopped using the BiPAP machine 6 months ago.
-General anesthesia dental visit scheduled for July 21 Anna's adult teeth are coming in without apology. She has what's called a shark tooth where the adult tooth grows in front and on top of the baby tooth. Also, because she was intubated as a premie, her jaw structure is more narrow, not allowing all the adult teeth the room they need. Anna is not a candidate for jaw widening because she cannot have a retainer type thing in her mouth. So they are going to pull like 6 teeth (all the remaining baby teeth i think), our plan is that there would be enough space for her adult teeth to come in. Pray for pain management, and that God would grow those adult teeth remarkably straight because Anna would not be a candidate for orthodontics either. Our God is able, "Delight us Lord."
-Hip Hardware removal is rescheduled for August 2nd. Grandma Sandy booked her flight to help us for this surgery, if all goes well it will be outpatient with at least a week of delicate pain management, a month of healing the incision sites and adjusting to life without metal and bolts in the femurs! Pray for excellence in surgical precision and that the outcome would be overwhelmingly worth the 1.5 years of correction to have her hip socket fixed. What a gift to prevent further dislocation.
-ESES, join us as we are prayerfully considering the 3 month valium treatment, We were referred to the neurological specialist of ESES in the children's network, but he retired. Now there is a three month wait list for our regular neurologist to see Anna, just to activate a plan of treatment. Pray that the Lord would confirm whether or not we should do this treatment. it is a 3 day inpatient stay to start and three months of medication. It all seems like a bit much and addicting but the results are pretty convincing. In Truth, Jesus can heal by just saying a Word! Add to that Anna struggled the last time she was on valium (granted she was on tylenol and Oxycodone too).
4. Other prayer needs,
-We lost another doctor, our GI who kept tabs on nutrition, J and G tubes/ports, BM, UTI's, and her reflux. About two weeks ago Lindsey noticed that Anna lost 6 pounds. This is a big deal because we have struggled to keep her at a good weight (Anna is in like the 10-20th percentile for weight). So we are upping the blended foods from 6 ounces once a day to about 7 ounces twice a day, on top of her through the night feed. We have been adding some "junk" organic maple syrup and olive oil mainly. I wanted to try Cheetos, Twinkies and Dr. Pepper but I got overruled. Pray for weight gain as we enter these procedures in the next couple of months.
-Pray for a rich blessing and grace upon grace as we head out this coming Sunday to spend a couple of nights near a state park with our neighbors. There won't be electricity but there will be bicycles, ATV's and a campfire. Pray that Anna and all of us would be healthy, sleep well, and be refreshed with this change of pace and activity. We ask the Lord to bless our weekend of the 4th of July as we celebrate my mom's 83 birthday as well. Pray for rich bonding and times of talking about faith with my Brother Will, his bride, mom and whoever else might be there.
Praise the Lord for getting us through COVID without much to complain about. I consider it a favor from our Father. Praise Him for all our needs being met, help given, a life abundant filled to overflowing with love and a hope that never fails.
Thankful for each of you who receive this!
Nic for Lindsey, Anna, Simon, Renee, and Victor
