Patient of the Year!

Tara did so well today. We were at the hospital from 8am this morning until about 2:45pm non-stop. Admissions were busy this morning and we had to wait about 40 minutes to be admitted. Our next stop was the labs. That was hard for Tara and me. Luckily they got her in the first poke...but it still seemed forever.

After labs we went to the Pediatric Clinic where we met a nurse practioner who went over the protocal, our family histories and Tara's life story as well as physical exam. Tara did very well and the nurse was very impressed.

We then went to have a rounding with the NOMID team, which consists of 5 people including doctors and nurses. We told our histories again and Tara's life story. Some things that we learned were that the doctors here see about 40 NOMID patients (Muckle-Wells being part of NOMID) and the youngest is about 6 months old. Tara is on the least serious side compared to those patients. They told Steve and I that we could get tested as well to see who the carrier is...if one of us is actually a carrier. There is a slight chance that this mutation could have happened at conception. If one of us is the carrier the chances of us having another child with the disease is 50%. Tara's chances of passing it down is 50% as well. Steve and I are opting out of this test. We don't think we will blame each other for it, but we would blame ourselves if we were the carrier and medically it doesn't make a difference. We also learned that the doctors here are finding a pattern of the patients with hearing loss and they will know after the MRI on Wednesday if she has part of this pattern. So they may be able to tell if she will eventually lose her hearing (I pray that she doesn't).

Next we went to a doctor in rehabilitation who measured Tara's limbs, he checked to see how flexible Tara was and asked about when she started her gross motor, fine motor and speaking skills. It was very hard for me to remember when she started everything and she is not even 2 years old yet. She cooperated very well and the doctor told us that he wished all the patients were as cooperative as Tara.

I say that Tara wins "patient of the year"...she did so well. We have 4 more days to go. Tomorrow doesn't look to be too bad...Wednesday is the day when she gets sedated and has the MRI.

Thanks again for your support and prayers. I hope everyone is doing well in Michigan. My brother called us and said you received some snow. The weather here is mid-40ish and no snow.

Keep safe...