Lydia

When Lydia was getting her ABR last month, the team that was sedating her was concerned that she might have a floppy airway (there is a technical term but I can never remember it!). They highly encouraged me to get Lydia seen by an ENT. Our case manager got right on it and we got …

The day after Lydia’s ABR, she had a BIG physical therapy appointment. On top of all of Lydia’s doctor’s appointments, she is still receiving physical therapy, feeding therapy, language therapy, and they are talking about starting occupational therapy 😳. It’s A LOT. There’s no other way to put it. But we love Lydia’s therapists and …

Last week, Lydia had her ABR {auditory brainstem response} test. We were having some concerns about her hearing. It is a debated issue around here how well Lydia hears. We don’t really know if she knows her name or anything else really. She’s had two “booth” screenings and they came back inconclusive. They basically told …

Since we are three hours away, we really try and make the most of our appointments at Primary’s. This day was a LONG one but we were able to get a lot done! Lab Work First up, was lab work. After our last meeting with the neurologist, they put in more lab work for this …

We were so sure that after we completed our mammoth list of tests from our developmental specialist that we would have a direction for Lydia. How could we not?! Our two biggest tests that we thought would give us some guidance were the MRI and genetic test. When we got the news that both came …

Oh geez. We had a little break from tests and appointments for Christmas, but the next week we hit the ground running, again. Here is a little bit of a dump of all of the updates we have from the last two weeks. Hearing Screening Our first appointment was with the audiology clinic at Primary’s. …

I feel like Lydia has gotten a lot of time on the blog lately, but it’s always about our concerns and her medical journey. Our concerns are big and they are real {and I’ve got some updates ready to be shared in the next couple of days} but I also just want to remember our …

Oh boy. This is going to be a BIG long post. This week has been overwhelming to say the least. My emotions are ALL over the place and it has been difficult. I think we are all feeling like this is a defining and refining time for our family. On Sunday afternoon, the kids and …

***FYI, we do not put Lydia in a mask – we just had got some new ones for Sarah and we tried it on Lydie*** A couple days before Thanksgiving, Lydia had her long awaited neurology appointment at Primary Children’s Hospital. Everything was kind of hinging on this appointment and we were anxious to get …

Lydia update! To catch up on how we got here, read this post. Last week, we had our appointment with the Dysphagia Clinic at Primary Children’s Hospital. Our other kiddos were able to stay with my parents while I went with Lydia (only one person is allowed with the patient, so Mark stayed and worked …