Posted on August 14, 2017
Posted on August 14, 201708/13/17 9:00 p.m. Update from Mother Jessica Mills:
Allison is still off the vent and we now have permission to do short outings away from the hospital. Her Daddy and sisters broke her out today! (Picture attached.) Tomorrow we plan to take her in the car somewhere for an outing. It's a big deal because we have to take along an oxygen tank, vent, chair, and portable suction. She is doing so amazing though! Such a trooper through it all.
Allison is doing great with her therapies but we are planning to let her attend some on her own because she is starting to want to cling to us during therapy instead of truly getting the most out of it.
The plan is still for us to come home on August 30. We were informed that instead of the de-cannulation (trach removal) in mid-September, the doctors would be more comfortable with keeping Allison on the trach thru cold/flu season. So they are thinking possible de-cannulation around March. This is a little disappointing but it is for the best. I'm sure Allison will prove that it was unnecessary in the end through her God-provided strength! We have a follow up appointment with our doctors at the Shriners in Greenville, SC on October 6, so we will see how she's doing at that point.
We have lots of praises and accomplishments to celebrate! Thank you for the continued prayers and support in our journey!
Posted on August 1, 2017
Posted on August 1, 2017Here's today's picture - looks like it didn't post with the earlier update!
Posted on August 1, 2017
Posted on August 1, 201708/01/17 1:45 p.m. Update from Mother Jessica Mills:
It's been a busy several days for Miss Allison and family!! She's hard at work doing therapy and re-learning to do all the things a "normal" 19-month old can do such as eating, speaking, breathing, moving her arms and hands, standing and walking. It's a long, slow journey but Allison continues to exceed expectations! We know that is because those expectations have been set by man and our God has no use for them!
During the daytime, Allison has been entirely off the ventilator (the machine that pumps her lungs with air) for nearly a week now! 🙌🏼 Of course she still has the hole from the tracheostomy, but she is able to breathe without forced air for extended periods and while doing physical therapy, etc. We are also keeping her off the vent an extra hour each evening. Tonight she doesn't go back on until 10 p.m. She's making great progress in this area!
One of the many therapies currently underway centers around (re-) teaching Allison how to breathe out of her nose and mouth, rather than getting air from the tracheostomy hole while she is off the ventilator all day. This is done by capping the trach so she is forced to breathe in through her nose and mouth. (The speaking valve attached to the trach allows air in through the trach, mouth, and nose (but only out through nose and mouth), so air goes through the vocal cords and allows her to speak. The cap only allows air in through the nose and mouth and forces the trach closed.)
Allison's trach was capped for 30 minutes yesterday and we will add 30 minutes each day as she tolerates it. She has to tolerate the capping before we can consider removing the trach. The doctor is coming by today while Allison sleeps to see if the muscles around her ribs and lungs are getting stronger or if she is still depending primarily on her diaphragm to breathe. Prayers for signs of strengthening in her lungs and rib muscles!
The goal is to remove Allison's trach before we leave (which is tentatively August 30), so please pray that we reach that goal as well!
Allison is continually gaining strength in her arms and (re-) learning to roll over and sit up on her own. Today she was in the sit-to-stand device that helps put pressure on her legs to get sensation going there (picture of a slightly grumpy, hard-working baby Allison attached!). She will do the Thera-stride next week, which will simulate walking on a treadmill while she is in a harness. After three+ hours of therapy this morning, Allison has one more therapy today, which is to practice in her wheelchair. She is already learning how to use her arms to push the chair herself!
Allison is so smart and is exceeding all the goals everyone has initially set for her. God is continuing to work in her body and spirit. We continue to thank everyone for their love support and prayers!! We wouldn't be here without the army of support constantly lifting us up to God!