Busy day at the myelo clinic

2013-09-13 16:04:52 by Megs Pollock, Patient Family, as posted on the inside.akronchildrens.org blog.

What a long, long, long day we had last Thursday. We left at 7:30 a.m. and arrived back in Seville at 2:30 p.m. The day started off in radiology. (I’m tempted to become an ultrasound technician just so I can follow what’s happening on the screen.)

After the ultrasound tech completed what she thought needed done, she went out to make sure she had everything scanned for the doctors. This gave us an opportunity to feed our little guy before heading to the myelo appointments.

We left radiology at 9:20 a.m. Next, we headed over to the Myelo Clinic where Randy checked us in. Long story short, our chart was misplaced and an hour later Randy asked why we hadn’t been seen yet. Five minutes later, we were on our way in. We had a couple more bumps in the road, but were able to get them sorted out.

Our first visit was from urology. The wonderful nurse practitioner asked questions about how Jordan was going as far as urination and signs for infection - none of which he is having difficulty with. We’ll be notified of the findings from the renal scan later this week.

Next was the physical therapist. I was pretty excited to hear what she thought of Jordan’s legs and feet. She gave us some exercises to keep his feet and torso stretched, along with keeping his head straight when he lies on his back. Jordan tends to lie on one side of his head or the other. Keeping his head straight will allow him to strengthen the muscles to keep it steady in the middle.

We also talked to a dietitian. He clocked in at 10 lbs 9oz.

Dr. Hudgins was well worth the wait. He is always so friendly and informative. It makes me think of the commercial:

  • Surgery $4,000

  • Hospital Stay $10,000

  • Neurosurgeon taking time out to cuddle your baby – priceless

Jordan’s ultrasound of his head looks good so we are in the clear for 3 months unless we see signs of malfunction. Randy and I have been curious about what the actual shunt looks like so we requested to see one. It’s basically a small rubber tube with a valve with a screen on the end.

Dr. John Fyda, the gastroenterologist, discussed the bowel issues we may encounter over time. Jordan is currently going on his own, but as he begins to eat solid foods there is a higher potential for a problem. He will be placed on a program when he begins to potty train.

Dr. Robert Hull is Jordan’s developmental pediatrician. He is very relaxed and interested in listening to our questions and concerns. Dr. Hull looked Jordan over and made a comment about the birthmark on Jordan’s stomach. He has a small concern and would like us to see a dermatologist to assess the area. Other than that, Jordan seems to be on track for the rest of his development.

Due to the mix up at the beginning of our appointment, Dr. Kerwyn Jones was unable to meet with us because of his afternoon schedule. We will make an appointment with him on a separate occasion.

All in all we appreciated the Myelo Clinic because we didn’t have to schedule with each individual doctor. And once we were in our room, the pace was just right for Jordan. We would have liked to have seen Dr. Jones, but will schedule the appointment for a later date.

Time for a nap.

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