Appointments Update

Last week was less than ideal. We had to cancel the audiology/ENT appointment because Isabel was in the hospital. On Monday, we saw the surgeons about her G tube, and they were concerned that it may be infected, so she was admitted right from clinic. We did not anticipate that. They wanted her to get IV antibiotics. They also said that her G tube would need to be moved because, as I suspected, it was now too close to her pacemaker. Long story short, we had them remove the G tube. (She is fed through her separate J-tube so no worries about that). The stoma is healing up, slow and steady. She came home last Friday on oral antibiotics. That was earlier than expected because they could not get an IV in her...and that is very scary. Her veins have had so many picc lines and IVs in the past year that there aren't any left in decent shape right now. In a life threatening emergency, there are things that they could do, but it is still not good. :( So we continue to wait for all to heal and will be rescheduling the ENT appointment. We have a follow up with the surgeons in a couple of weeks for them to see how the G stoma is healing and to discuss plans moving forward.  On a positive note, she remained happy and well all week and we all got to visit with a lot of old friends.  She was happy to come home though...and that made us very, very happy.

September, Already?

Hello. Happy Fall. I hope that you had a good summer. Ours was good. It was nice to have Dan home so much. We even went to Greenfield Village with Isabel. It was overwhelming, but we did it.
Isabel has been growing and developing like crazy. She is rolling all over the place. Sometimes she seriously just won't stay still. She is getting into everything within reach, which includes her feeding to tube...:/ Conversations are often punctuated with "No Please" or "Isabel, No." I find myself excited that she's exploring her environment and figuring things out, and, at the same time, slightly terrified. :) She's working on tummy time, and waving, and has been sitting up quite a bit in her Bumbo seat and now her high chair. She also turns the pages when we read books, loves her toes and blowing raspberries. She is such a content and happy girl. We're so proud of her.  She weaned off of two of her medications (one of the diuretics and a vitamin supplement) and has had many clinic visits. She is doing very well medically and several of her specialists are quite excited about her growth. She is now about 15 pounds and over 25 inches long. It's hard to find clothes for her sometimes though because they have to accommodate her feeding tube and she has a really long torso and short little legs. She has 6 teeth now and number 7 is on its way. Her hair is crazy and untamable. Daddy loves that.

We have a couple of important appointments this week. We're seeing the audiology and ENT docs again. It was previously determined that Isabel has mild to moderate hearing loss at the worst, and that she has some fluid in her ears. This visit will reassess her hearing and the fluid to decide if she would benefit from getting tubes in her ears. The other appointment is with the surgeons and pacemaker docs. Everything is working fine, but as Isabel has grown, her pacemaker has moved a bit...or her body has moved around it.  It is now within an inch of her G-tube. The docs know about it and don't seem to be immediately concerned, but we want them to take a look just to make sure that the proximity of the device and tube won't cause any problems. Both of these visits could amount to nothing, or they could both possibly mean procedures or interventions of some kind. We really have no idea, but we're nervous, especially me. She is so much healthier and stronger than she ever was, and if she needs to have something done, I know she'll be just fine, but the thought of her going back in the hospital again makes me anxious too. We would really appreciate any extra prayers, good vibes, or warm feelings about all of this. We'll keep you updated.

Until then, we're enjoying our goofy, feisty, little monkey girl and are looking forward to some nice Fall walks and our first Halloween at home. Spoiler alert: she's gonna be a lady bug!

P.S. We don't really call her Izzy very much anymore. She is mostly just Isabel...or Isabelly...or Belly...or Bug, thus the costume. :)