A Roller Coaster of a Week

What a roller coaster of a week! It started on Monday with the trio having their last group therapy for the summer at LESA Monday morning. When we came home for therapy I put Johnathan in his highchair for snacks and in is usual fashion lately he decided he was done with his hearing aids and ripped them out, calling to me “all done” and giving them to me. The one was not squealing so I told my mom to check the battery, I knew they were close to being dead anyway. I then left for work for the afternoon, came home to take the girls for their orthotics adjustment and learned that the reason the hearing aid wasn’t squealing was because there was no battery in it! So I called poison control because I had read that swallowing batteries can cause burning of the esophagus, let alone the lead poisoning. They recommended that eventhough we didn’t know for sure that he swallowed it, we also didn’t know he didn’t so to take him for an abdominal x-ray. So once I got the girls home from their appointment I took him down to the ER and spent 3 hours there but thankfully he did not swallow it! However, the battery is still missing… Everyone’s acting fine (including the dogs) so I think we’re safe but what craziness!

Tuesday morning Mady had her Bayley’s evaluation (looks at cognitive, motor, and behavorial development) and she did great! She is in the normal range for cognitive (including speech - she is doing very well with vocalizing, however, we have some areas to work on with her understanding objects) and normal for behavioral. She was found to be a bit behind with motor, which we knew and is why she is getting extra PT. Johnathan’s Bayley’s is at the end of the month so we’ll see how he does, I think his speech will be flip-flopped, he is understanding more than he’s saying although they are starting to even out.

Thursday morning we had Johnathan’s genetics counseling appointment. Let me tell the whole story behind this. So back in the NICU when Johnathan was fighting to live, to fight the infections, and to keep his blood pressure up he was required to take certain antibiotics and was on the ventilator for a long time, including the jet oscillator. Between the meds and vents we were told repeatedly that these things could cause hearing and vision loss. So when we learned that Johnathan had hearing loss we were not too surprised, obviously not ideal but those things saved his life and his hearing loss is corrected with his hearing aids so life is good! Fast forward a bit and his ENT mentions that she’d like us to see genetics, that children with his hearing loss, 50% is because of genetics, 50% because of environmental. We were hesitant to even go down this road knowing that we have no family history on either side but when you start looking in to genetics, there’s some pretty scary future problems that could occur and you’d want to know about these things ahead of time to try to prevent if possible.

So we saw the geneticist in March and he was very happy with how well Johnathan’s developing and he looked over his body and nothing is abnormal so he said there was only one variant to test for and it is the one that reacts with the one drug he took (gentamicin), causing hearing loss. So Johnathan had bloodwork done and the results showed that he has this mitochondrial variant on all of his cells and it was of unknown significance, only found in 2 of 255 people that have his type of hearing loss. So from there they wanted to have the girls and myself tested as all mitochondrial variants pass thru the mother – the girls will pass it on to their children but Johnathan will not. Results were that all three of us also have the same variant and because the girls also had the gentamicin (for this to have been the cause, even one dose would have caused hearing loss) and do not have hearing loss the doctors believe that this is NOT the cause and is a variant that does not cause any long-term health effects – thank God!! So it is back to the cause of his hearing loss being environmental for Johnathan (i.e. NICU requirements). Because there is still not much known on this variant and they are learning new things in genetics daily, we will check back yearly just to make sure that nothing new is learned with this specific variant. Thank you all so much for your thoughts and prayers for Johnathan!

Yesterday afternoon the kids all had their therapies at DMC and they each had great sessions! Johnathan was way more talkative than normal, saying so many words appropriately and even doing more of his “sentences”, the therapist was very impressed as she hadn’t heard him do all that yet. Mady did great with PT and received her modified orthotics, they went from almost up to her shin with double straps to just inserts, no straps! She is rocking!! Annabel also had a great session, no fussing and worked really hard. I have been very happy with the services received at DMC, they kids have all come a long way in a few months! What a worrisome, crazy week! Looking forward to what will hopefully be a nice, relaxing, fun weekend!

Next week is my dad’s surgery on Thursday (please pray that all goes well and that they are able to remove all of the cancer) and then we are camping the following week with our good friends and their families.