If I haven’t returned a call or message to you in a couple days, that’s because my head is spinning! Wow! Just take yesterday for example, I spoke with and/or visited 8 doctors/offices in one day. We had Finn’s Otolaryngologist (ENT) consult, then off to a Cardiologist for an EKG, then spoke to 2 ophthalmologist, debriefed with his Audiologist AND Pediatrician, then had my own OB appointment and rescheduled my podiatrist. When I got home I had a few messages waiting for me via text, voicemail & FB and I’m sorry to admit it, but I shut off my phone, went to bed – barely having the energy to live stream the B’s while I fell asleep.
As I said before, we met with the Otolaryngologist, Dr. K, and she walked us through the process of how we determine if Finn can get the CI surgery- an MRI in July being the major test- and also about ruling out other syndromes that deafness can be a symptom of. That’s why he got the EKG done afterwards and why he will go to the Ophthalmologist on Monday. Problems with the heart, eyes, or kidneys combined with hearing loss can sometimes be a sign of something else. He seems to be healthy in all those areas, but we just need to make sure.
I really refuse to let myself go down those “what if” paths in my mind. We have absorbed so much information from doctors, websites, books, pamphlets, etc. in the last few weeks- mostly hopeful, but some downright scary. The worries I could let myself put on my shoulders if I allow them could easily crush me. The big worries like what if he does have some other major syndrome, what if he can’t get the CI surgery, what if his eye sight is not strong enough to compensate for his hearing loss, what if this puts a major strain on my family – to the normal newborn worries that I had with Kayla and probably every parent has like: what is that new rash, is he sleeping enough or too much, etc. I form new questions almost every single hour of the day. I keep a list of the questions and who/where I can find the answer and try to attack them in chunks throughout the day. The questions- I allow myself to formulate those and get answers to those, but the worries- I just have to stop myself because there are just too many unknowns at this point and I NEED to have the “cross that bridge when we come to it” attitude, which isn’t easy for someone who has always tried to be 3 steps ahead of every tiny detail in her life.
I also have to benefit of both being too busy to really have time to just sit there and think and when I do have any down-time, I have 2 kids who fill me up with so much love, it is hard to be too down. The last couple of days Finn has really started loving floor time. He especially loves if we go right down on the floor with him and really wants eye-contact. It’s cool that he is starting to fuss now to be played with and that it isn’t just for food or a diaper change. It’s amazing how early their little personalities start shinning through.
Finn is so lucky to have such a great family. His sister dotes on him- ran off the soccer field last Sunday and laid on the grass and said she wanted to play with her baby for a little while, protects him all the time (especially from Marley when he tries to sniff him), and she can’t wait to learn ASL. Dan is the best father Finn could ask for- extremely dedicated, so passionate and, right now, Finn’s favorite (FOR NOW!). Our extended family has been amazing, everything from helping out with soccer, or driving Kay to school or watch her during appointments, offering support in any way they can. Also, so many people reach out to us every single day both in and outside of the family. We have that support network that everyone always says makes or breaks you in high stress situations.
Coming up we have the SLP evaluation tomorrow (the Battelle developmental assessment) and we will set our speech-language goals through what is essentially his first I.E.P.- very strange to be on the parent side of this for once and not the teacher side! Monday is the eye exam, another ABR (hearing test) is scheduled for Tuesday, and ear molds at the end of the month for his hearing aids.
I will try to keep people in the loop about results we get as we get them, but again, I apologize if I don’t get back to you right away- I am going to try to be as faithful as possible to this blog so check back here if you are wondering about any updates/results.
Thank you all for your support : )