Hello Everyone,

It’s been quite a while since we’ve updated y’all on AJ. 2023 might have been the roughest year so far for AJ behaviorally and sleep wise. He stopped sleeping in February of last year and started 1-2 hour meltdowns, panic attacks, and separation anxiety that escalated for most of the year. We continued with Play and Occupational Therapy but ended up requiring Psychiatry to assist us in helping AJ. He was diagnosed with severe ADHD, anxiety, and insomnia. We started a journey to find a good medication combination as his brain reacts very differently than what is considered “normal” due to the intrauterine drug exposure. I hate to say it out loud but I think we’ve found the right combination of medication to help him be successful during the day and into the evening. He went from scribbling a couple lines of a picture to not leaving a white section on the page. It’s been super fun to watch him meet his potential. He’s also recently started gymnastics which he has been able to follow directions and have fun while still showing off his daredevil personality.

Yearly MRI

AJ had his yearly brain MRI on February 2nd revealing a new brain bleed within one of his cavernomas. This isn’t great news but the crazy part is we saw no overt symptoms that we can match with a bleed (stroke, seizures, loss of consciousness, vomiting). The Neurologist wasn’t particularly worried about the bleed since it seemingly hasn’t produced symptoms. He discussed that the clock for additional MRIs (5 years of them annually from the onset of the bleed) would start over and that the likelihood of re-bleeds are higher following a bleed. He didn’t think there was a need to consult Neurosurgery at this point, but if it continues to bleed or it ends up causing symptoms, removal might become an option. He also discussed a potential medication, Propanolol, as a potential tool to limit future bleeds. He reported that there are several rat studies that demonstrate decreased growth of CCMs and bleeds with use of the medication. We are consulting with A CCM Center of Excellence, Dr. Smith in Boston regarding its potential use and any side effects with his current medications. Overall, it saddens me to think that his brain bled, but we have a great care team who is well-informed and capable of treating him along the way.

Chili

After the terrible experience that was Queso, “the Service Dog”, we didn’t know what we would do next. Little did we know Chili would come into our lives several months following, and she would be the perfect addition to our family. She is a Aussiedoodle/Goldendoodle mix that our good friends recommended as they had interacted with her, and she had a super calm demeanor as a puppy. We met her and decided to go with her, and as I was looking through her shot records, I saw that she shared a birthday with AJ, 8/16. I felt like it was a God moment to remind me that He’s got us. She has been a perfect puppy who has easily integrated into our lives. She is super smart and already very acclimated to our LOUD and crazy home. She will be spayed next week and then is scheduled to attend a Basic Training Program for 3 weeks following. We will slowly begin to train her towards the end goal of being a certified therapy dog by the age of 2-3.

Overall, both John and I are tired but thankful for each other and the teamwork throughout the all appointments, therapies, behaviors, and changes in medical information throughout the year. Faith in Jesus is the only way to endure this life no matter the ups and downs, and we are thankful He's never let us down. 🤍🤍🤍