It’s July 12th already?! No! Anyone else feel like the summer is flying by? The other day I realized it has been way too long since I last wrote to everyone. And we have a lot to catch up on!
In June, all 3 girls and I ventured to Minnesota where we spent a month going through tests for the twins’ 6 month off treatment checkup. We had dietician, oncology, labs, ENT, Physical Therapy, Neurology, Cardiology and a few other appointments, an MRI, tubes placed for Kenedi after her hearing test revealed she had hearing loss in her right ear from reoccurring ear infections and standing fluid, an EEG for Kendal, and Echos and EKG’s for both girls. Since we have two littles, they have a very difficult time scheduling us. So for 3 weeks, we traveled from my in-laws home 45 minutes away, to Mayo, nearly every single day.
Kenedi was given the all clear to pull her NG tube. That was such a happy surprise for us! She also had been experiencing reoccurring ear infections so we got to meet with a fantastic ENT who reviewed the results of her hearing test and immediately scheduled her for tube placement in her ears. Since Kenedi was born with a sacral dimple, we were already scheduled for an MRI to get that checked out. After some shuffling around, they were able to get her two surgeries (the MRI was done under sedation) at the same time. Her tube placement in her ears went great! And the results of her MRI were that her spinal cord is not tethered. Some answered prayers right there.
While we were in Minnesota, Kendal had some strange shaking spells where she would twitch uncontrollably for a few seconds at a time. After a long ER visit, an EEG and a visit with the neurologist, we learned that it was nothing serious. More answered prayers.
The girls’ lab results were still NED, which is fantastic news. Their Echo and EKG’s were within normal limits, although they have changed slightly, we will just continue to watch that. They will receive Echo’s and EKG’s every 6 months for the rest of their lives. They have been surpassing all our goals in terms of their gross and fine motor skills. So much so, that they have been discharged from in home PT and OT visits. We also have been discharged from Speech Therapy.
We will continue to follow up with our labs and physical exams every 6-8 weeks at Mayo. We have one final dietician appointment before we can claim that we are tube free for good, which of course I’m anxious about. Kenedi will have a follow up hearing test done to see if the hearing in her right ear is coming back. We are hoping for good results there. And the girls will continue to follow with Birth to 3 to make sure they are progressing in gross and fine motor skills.
On top of a medical update, I want to update you all on some changes happening in the Breyfogle household. All three girls are now going to full-time daycare. This leaves me anxious but also makes my heart explode. We love our daycare provider and I love that all three of my girls are together all day every day – something I have been wanting for the last year.
Speaking of the last year, we are fast approaching the girls’ one year diagnosis date. I know this day will be emotional for me, and for some in our family. But instead of allowing it to consume me I’m going to face it head on and continue to find joy in the every-day-crazy-busy-overwhelming life we live.