Posted on October 17, 2017
Posted on October 17, 201710/17/17, 12:55 a.m.
Please remember to pray for Allison and her family this morning (Tuesday), as Allison has to be put under for her bronchoscopy.
Tuesday marks 21 weeks from the start of this journey and our 7th week home with our new normal. The bronchoscopy is the first step in the possibility of the trach removal (known as de-cann-ing). There are several more steps but we are praying that Allison does well with the sedation and procedure and that we receive good news. The doctors will be looking for scar tissue, enlarged adenoids and/or tonsils, and other things that may need to be addressed prior to removing the trach. If nothing is needed, then they will schedule us for a sleep study to monitor her CO2 levels with the trach capped (normally she wears a humidivent to add humidity back into her lungs that she may not get during the day while capped).
God has blessed us beyond measure thus far. And we know He isn't finished yet!
Posted on October 13, 2017
Posted on October 13, 201710/13/17 Update from Mother Jessica Mills:
Our trip to Greenville, SC, was a success! Allison doesn’t need any new body braces to keep her straight and steady, which is a blessing. (She still wears her torso brace.) Everyone was impressed with her range of motion and her flexibility. They have requested for us to return to Philadelphia for a 1-2 week camp in June for additional time on the Therastride. We are still praying that she will walk before then and we won't have to go, but we agreed to sign up because we are willing to go to the ends of the earth for whatever is best for Allison!
We have the bronchoscopy on Tuesday so we have a lot of mixed emotions for the results; however, our Faith remains in our Father! He is forever faithful!!!
We love you all and we cannot thank everyone enough for continuing to remember us every day. We still have a long way to go but we know how far we have come! We give all the praise and honor to our God who is always good!
Posted on October 4, 2017
Posted on October 4, 2017Update 10/04/17 5:30 p.m.
We haven’t forgotten about you — Allison & her family’s prayer warriors out there — we love, appreciate and thank every one of you!! And we humbly request that you ‘keep on keepin’ on’ with the prayers, because that’s sure what we’re doing!
God’s hand is at work in Allison’s life every day. Though we’d love a quick-fix for our girl, we believe in our hearts that God, the author and finisher of our faith, is writing Allison’s beautiful story one day at a time, no matter how long and trying the day may be.
The past few weeks have consisted of getting into a new routine with Allison’s therapies and her sisters’ schedules, and, unfortunately for Mother Jessica, fighting the second appeal with the insurance company over at-home night nursing care. We have been hoping Allison would get federal disability assistance, which covers night nursing, but we are playing the waiting game with the government. So until we hear from them, Jessica spends hours every day on the phone with her insurance company and nurses, etc. trying to get Allison the care she needs. We know God is in control and are holding out hope that His timing is perfect and insurance answers will come soon. Please pray specifically for this area.
Allison will go tomorrow to the Shriner’s Hospital for Children in Greenville, South Carolina, for the first of her twice yearly check ups there. This is specific to her rehab and spinal cord progress. Then Allison goes back to ECU Physicians on Oct. 11 for the follow up with gastro on her g-tube. Two prayers related to the g-tube are that (1) she has gained enough weight to no longer need night feeds and (2) she will start taking her medication through her mouth. The hardest medication to get Allison to take through her mouth is her laxative, which is a whole teaspoon so it's harder to sneak in other foods/juices. It's strawberry flavored but she is very smart! Once the g-tube is closed it must remain in for three months without being used before it can be removed.
Allison has a bronchoscopy scheduled for Oct. 17 in Greenville, NC, that will look to see if there is scar tissue or any other things (tonsills, adenoids, etc) that may need to be removed or addressed in her throat/breathing passageways. Then we can schedule a sleep study where they monitor CO2 levels with her trach capped overnight (currently at night she has a heat moisture exchanger which allows humidity to get back in her lungs that the cap doesn't). If all of that goes perfectly, then we can discuss timing on when to remove the trach. Please pray for God’s direction in this area.
Allison’s therapy three times a week has been going awesome and she is making progress on her movements all the time. She still wears her body brace on her torso but she is starting to sit straighter which is good for her spine. And she is learning to roll over and getting better at it! She is doing great with her wheelchair (even though we pray and hope expectantly for the day she walks out of it!).
Thank you again for your prayers and concerns. We appreciate them more than you know!