Neurodevelopmental Appointment

On Thursday, Jordan saw Lynn Fagerman the nurse practitioner at Dr. Burdo-Hartman's office (neurodevelopmental pediatrics). Jordan weighed in at 18 lbs 9 oz - that's 3 pounds gained in just over 2 months!!! That is a HUGE increase in a short amount of time! She was 28.3 in long - she is steadily increasing at the normal rate of growth for length. She is currently 16 1/2 months old but is the weight of an average 9 month old and length of an average 10 month old. She is just below the 3rd percentile on the charts. This was exciting news because we have been wondering if she would ever reach the minimums on the chart. I'm pretty sure that by her next appt in 3 months she is likely to be on them!!

Over the course of the next month we will be transitioning Jordan from 6 feeding per day to 5. We will be gradually dropping the amount of her 10 or 11 pm feeding while increasing the other 5 per day. The overall amount per day will remain the same, but we will substitute 1/2 of her Pediasure with Pediasure with Fiber.

We will be stopping her Zantac in the next few days as her medication runs out. This was to reduce the amount of acid in her stomach due to her severe reflux. Since having the Nissen, she is unable to reflux so it isn't so much of a problem anymore. I am slightly concerned that the acid will affect the skin around her tube site but I will watch it closely.

They will be scheduling Jordan for another videofluoroscopy and oral motor evaluation at Mary Free Bed after the first of the year. After that she will begin therapy again and we will begin to reintroduce oral feeding. Lynn suggested waiting until January becasue at that time her feeding will again become very long and somewhat complicated. I will need to attempt to feed some food orally and the calculate what amount of nutrition was received (due to thickening the Pediasure) and subtract that from the amount needed and supply the remainder amount through the tube. Her feedings will probably take at least 45 minutes at that point. I am excited to move forward with oral feeding, but am happy to be able to get through the busy holiday season first!

I discussed with Lynn all of the "little things" we notice that are different about Jordan and why they don't add up to anything. She explained that things such as her ear tags, simeon crease in her hand, straight eyebrows, extra fat pads on her palms and heels are called "soft signs" and can help identify a specific diagnosis but don't necessarily always add up to one. In Jordan's case, Dr. Toriello (geneticist) evaluated her and confirmed through chromosomal testing that she didn't have any of the specific syndromes or disorders that those signs could indicate. Lynn encouraged us to continue to have her evaluated over time by Dr. Toriello as Jordan's features and symptoms could change and a future diagnosis is still possible.

One of the main concerns I brought up was how Jordan still falls over backward several times per day. This is something that most kids stop doing fairly soon after learning to sit. She explained that Jordan has Hypotonia which is abnormally low muscle tone. She said that it is fairly significant in her core muscles throughout her torso but also in her arms and legs. She noticed it becasue of Jordan's posture when sitting. She encouraged me to work with her therapist through Early On to strengthen those muscles and hopefully we will see her falling over less. That is also the reason Jordan has difficulty standing for any length of time. She has about a 5-10 second limit and then she either sits down or starts leaning over whatever she has pulled up on to try to support herself. Again, we need to work on strengthening those muscles through therapy.

Overall, I was very pleased with this appointment because it was so throrough and complete. We were with Lynn for an hour and I felt all of my questions were answered. I also feel more comfortable knowing that if questions arise, I can call at anytime and discuss them with her.