Wow where has the time gone? It is hard to believe that Arin is already 6 months old. She is doing great. So far no seizures that we know of but an EEG has been ordered for the first part of Nov due to a great Stevie Wonder impersonation that we a curious about. So far she has 12 different doctors and 20 or so different diagnoses. With the lastest being silent aspiration when feeding thin liquids so now have to have honey thick fluids and no foods for another 2-3 weeks and they fully evaluate her swallow study. She also has moderate hearing loss in both ears and cortical vision impairment. Due to those 2 issues and the potential for seizures they are doing a sedated brain MRI on Oct 4. At that time her ENT is also going to come in and really look in her ears and if there is any fluid behind the ears they will put in tubes and then repeat the ABR so we can get the hearing aids as soon as possible. She has been referred to the school for the blind and deaf for therapy and services due to these 2 issues. We are also getting ready to add occupational and speech/feeding therapies to our already once a week physical therapy. She is otherwise doing really well and is now holding up her head and has pretty could head control even if she is constantly looking to the right.
Here are some pictures of her sitting in her Bumbo chair and cuddling with mommy while sucking her thumb. I will update more if we get any other interesting diagnoses or great news.
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Thanks for the update on your sweet daughter. I hope the EEG comes back clean for her. My son also did/does the “stevie wonder” thing… I’m assuming you mean moving the head side to side rhythmically… We had an EEG done because of that and some hand waving/tremoring, but it came back normal, and we also haven’t seen any seizures that we are aware of. It might just be a sensory thing. My son is often making full eye contact while doing it, so we aren’t terribly concerned. I hope Arin is in a similar situation for you.
Arin is beautiful! My daughter has moderate hearing loss in both ears. She has the cutest little pink hearing aids. In the beginning it was a struggle to keep them in without her pulling them out but now she doesn’t touch them unless she is sleepy or if we are riding in the car. She has been saying lots of words too. She has recently started saying “God is great, God is good” when we bless our food. I hope wearing the aids is not a great struggle for you but if so please keep trying and do not give up. They do help! I wish you and Arin the best.
Arin is gorgeous, and doing so well sitting up in her Bumbo! Mia has had both an EEG and MRI earlier this year, so I understand how daunting it seems. All I can say is that the actual event is nowhere near as scary as the thought of it – but you probably know that already with all the other investigations Arin has been through. Sending love and best wishes from our family to yours.