Posted on November 17, 2017
Posted on November 17, 201711/17/17 5:00 p.m. Update:
Allison is being a little trooper as always and is trucking along day by day. She still has PT and OT several days a week and is making great progress. She can sit on her own pretty well now and is still wearing her back brace for additional support. She can get around in her little zip zac and we should be getting her mini wheelchair around Christmas or the first of the year. She can crawl with assistance and is tolerating tummy time better. She knows how to tell us when her trach needs to be suctioned and she definitely soaks up all the attention she gets from mommy helping with the trach! She loves hanging out with her sisters but isn’t afraid to tell them who’s boss when they get annoying! 😜
Allison’s first sleep study will be Dec. 4 in Greenville - this appointment is to get a baseline for how she breathes in her sleep. Then she has a clinic appointment at UNC on Dec. 13 for the initial consultation with UNC’s pulmonary and ENT doctors. The UNC doctors have preliminarily said they will keep the trach in until at least the end of cold and flu season in early spring. This is not the timing we had hoped for, but we trust that God and the doctors know what’s best and we will pray that if Allison is strong enough now, they will reconsider removing the trach earlier.
We have been without a night nurse for over a month and, as you can imagine, mommy is exhausted. Praise the Lord we will be able to begin part time night nursing help starting this coming week! This is a HUGE answer to our prayers!
Our current prayers are (1) for continued progress with Allison’s therapies and complete healing and (2) to keep our household well in this time of sickness for many — we’ve already dealt with numerous illnesses this month, so prayers that all immune systems are ready to fight off further sickness!
As we head into the holiday season, we thank God so much that our girl is home with us and is thriving. We know the journey is far from over, but with God leading our way, the outcome is certain to be His best and for His glory. And we thank you all for your continued support and prayers!
Posted on October 25, 2017
Posted on October 25, 201710/25/17 4:30 p.m. Update:
Allison’s bronchoscopy last week went very well! Her adenoids, tonsils, and epiglottis all look perfect; her lungs are very healthy. The only area of concern is a small scar tissue at the trach site. The respiratory doctor will refer Allison to a UNC ENT doctor to decide whether we should remove the scar tissue or leave it since it is so small.
We had more appointments today and it was determined that we are to stop using the g-tube tonight and as long as Allison’s weight continues to remain steady then we will remove the g-tube on January 17th (unless it falls out in her sleep before then 😉)! We are altering her bowel program to be less invasive (that’s the PG version of what we won’t be doing any more). The UNC ENT sleep study should happen in the next month, at which point they will decide whether to remove the scar tissue and the trach. We are nervous, anxious, elated, blessed, and giving it all to God!
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!