For the Love of Ivey

Ivey visited her pulmonologist at the Trach Clinic last Friday. A week has blown by without blinking, but I'll get to the good news eventually. The cap for Ivey's trach is here with us, but due to a cold for over two weeks, Ivey is yet to get much practice with it. The cap is a plastic - well, cap - that covers the opening of her trach. It allows Ivey to breathe trough her nose/mouth. It completely closes off the opening to her trach. We are waiting to see how it goes with Ivey and her cap. There is potential for a, how did the doctor put it? - behavioral problem. Problem being that Ivey has not left her humivent or passy miur valve on her trach in weeks and weeks. She would rather take them off, sling them to the floor and stick her finger in her trach, thus her finger acting as a cap. With her finger in her trach she chats it up! I can't wait to see if she leaves the cap on...... Okay, so the cap is not really the good news, just a prelude to it. Mark your calendars for A...

This morning I have been busy scheduling appointments for Ivey. I have this great calendar that I use as my paper hardcopy then I transfer everything onto my computer in Outlook. Ivey needs her own personal assistant to keep up with her busy schedule and apparently I have been chosen for the task. (I am also qualified as CEO, nurse, doctor, cowgirl, superhero, one of the Backyardigans, chef, short-order cook, housekeeper and taxi-driver. All work is pro bono.) I thought I might share the calendar that I use for scheduling. It is g.r.e.a.t and small enough to carry in my purse or diaper bag. It is called Amy Knapp’s Family Organizer. It has a monthly calendar followed by weekly lists, a to-do list on each page and a grocery and menu list on each page. If you like organization…this is the calendar for you! You can check it out at www.thefamilyorganizer.com. So, this morning as I was flipping through my calendar it stopped on a page near the end of the calendar…Amy Knapp’s Family Story. N...

Every so often I try to give you a video update and pictures. Ivey is chugging right along these days. She has the whole choo-choo movement going on now and is beginning to pick up her arms and her legs. The way I see it, the hour glass is almost empty. She is about to be mobile. I think the biggest barrier between Ivey and mobility is the link that there are things out there. Once she makes the connection between sound and object, she will be on the prowl. I have also posted a new version of Ivey is her rocker with her brothers. This is our 'progression' picture, all three sitting in the chair. When I look back through the rocking chair pictures it always makes me smile to see how much they have grown and new things they are doing. When I first started taking this picture, Ivey was tiny and the boys still looked like babies. Now the boys look like boys and Ivey takes up her own space. So here they are all smiles talking away - even Ivey. Notice that she has her finger in her t...

Our little trooper made it through another surgery with great news. Her left eyelid has now been repositioned. It has a tiny bit of swelling and bruising. Her surgeon decided not to tweak her nose; that will come in a few years. Ivey's bronch came back with great news. The restriction in her airway has improved. Her ENT sees no need for reconstructive surgery at this point. He has given the okay to start the process for removing the trach , which will take months. The next step in this process will be a visit to her pulmonologist . Ivey's ENT also replaced the tubes in her ears. An ABR hearing screen was preformed. This test confirmed much of what we already know. Ivey has hearing loss and she tends to hear higher pitch than lower pitch. One ear has a pretty significant loss. The other had fluid behind it, so we will wait for 6 to 8 weeks and perform another hearing test. This will allow swelling to go down and get a more accurate reading. We do know that there is hearin...

Ivey will go in for surgery in the morning at Scottish Rite. Both her cranio -facial surgeon and her ENT will perform procedures. There are several procedures on the docket, all of which are simple. Please keep Ivey in your prayers tomorrow. Will update as soon as possible.