Chicago has it’s first snow today so I thought I should give an update here,
We are settled into our new home, although it still feels like we just threw our stuff down and where ever the furniture landed is where it’s staying and for the most part, I’m OK with that. Living next to our church has brought us physically closer to our worship space and the people we worship with, and the proximity has brought us even closer to our faith. We left the comfort of our neighbors, we left the comfort of having a long term plan but hearing those church bells ringing every hour truly reminds me that everything is going to be OK. It’s been sad, traumatic but also a true blessing!
We survived Halloween! Ethan jr. went trick or treating with his friends for the first time. It was big moment for them and they did great! If you don’t know my feelings towards this “holiday”, please read last years post
Since our cats are being boarded ay my mother’s house, we invested our emotions, time and money into a few new pets. Guinea pigs!! We have been adopted families of 3 adorable guinea pigs and we have 1 survivor. Trixie is our survivor. Charlie and Daisy have passed on to Guinea Pig Heaven. It’s been good life lessons for the kids here as far as grief and loss.
We finally got in to the Lurie Children’s Hospital Feeing Clinic. We had our initial appt and my excitement was temporarily crushed but by God’s wonderful grace, Gabi is now eating up to 18 bites per meal!! All 7 or so clinicians evaluated Gabi and asked me lots of questions for over an hour and then they excused themselves to discuss the best plan for my dear Gabi.
- a psychologist
- 2 nurses
- 2 Feeding/speech specialist
- GI doctor
They all came back and my excitement wasn’t hard to hide. Dr. Fishbein sat down and sighed. I know when the doctor sighs, there is a gut punch coming soon. I closed my eyes and said 2 quick prayers. One prayer was for strength to keep the tears at bay and for wisdom to speak clearly to this team of medical professionals. The second was for my sweet Gabi. A prayer for help. Please be with her.
Following the despairing exhale, Dr. Fishbein explained to me what an outpatient program is. Did I look new to this? He then explained to me that we have no starting point with Gabi. They couldn’t find a place to begin the feeding clinic for her. He went on to ask me if I was willing to travel. That is never a good question in medical explanations. He explained that an inpatient program would be best for her. I quickly thought to myself… OK, how bad can this be? Travel to where? Ohio, MI, WI? As long as we could drive… But would we have to fly?How much our airplane tickets? How could we possibly afford this? Slow down, slow down…
Dr. Fishbein said there are 2 wonderful clinics. One in Indiana, one in Maryland. Indiana, I thought? Awesome, we can do this. Evansville, IN. 6 hours drive. Oh.
“How long would this be?” I asked him, thinking and hoping he was going to say 1-2 weeks.
I couldn’t possibly. The other kids? School? Max? How could we possibly do this?
I took a deep breath and again prayed for strength. OK. ”Are there any other options?” I asked. Before he got a chance to answer, I was blessed with wisdom as I rephrased my question. “Would it be possible for us to try the outpatient program here and FIND a starting point for her?”
“Well, the swallow study was years ago and I don’t trust those results. We don’t know what is physiologically going on with her. I don’t want to make guesses.” He said.
The wisdom poured out of my mouth. I don’t really remember what I said but I did convince them to take her as a new feeding clinic patient. I eloquently spoke … without any tears!!….and said something like this- Gabi has endured every negative outcome that was possible but she has fought and she has defeated all odds. Please just give her a chance.
They did. And we have been there for 5 weeks! They agreed to reassess her standing after 5 weeks and they have given her another 5 weeks! Molly, our SLP, is thrilled with her progress! She has a long way to go but we have proven to this team that Gabi will prevail!
We work hard… and the inpatient program is not off the table but right now, we are getting the help she needs. We have appts made until Dec. 18th. The team keeps saying that we will hit a wall soon and will need further help and guidance. I am open to whatever Gabi needs. But right now, she is kicking some butt!
Her endurance is still a weakness. She can’t make it up more than 4 or 5 stairs before needing assistance and she still needs help when walking a long distance. Dr. Cava doesn’t really have an explanation for this. Her peers with the same heart condition are running and riding bikes. Her sats are still between 87-94, which is great for her. She continues on her 5 meds and even though Walgreens is a pain in my butt, all the meds are staying the same for a while. She is still 95% G tube fed but Molly even mentioned that our next appt, we can discuss cutting down on some of the formula to try and get her “hungrier”!!
In November, our beloved Connor was ordained a Deacon within the Archdiocese of Chicago. In May, he will be ordained a priest. We are so happy for him and so very proud of him! The picture below is Connor with his 11 classmates that were also ordained and the dude in the middle is Cardinal George! And the guys on the right hand side, are several of the bishops in Chicago.
We have had football championship games and we played hooky one day to go to the zoo. There was a baby snow leopard with its mother and its mother was on high alert staring us down. We got so close. It was awesome!
Thanks for reading.
Much love and peace,