It’s time for another Xander update. Xander is now 15 months old and 12 months adjusted.
To This (isn’t it just mind blowing?):
That means it’s time for a NICU follow-up appointment so they can see how his development is coming along. We went back to Amplatz for the appointment Friday July 26th. Grandma Jane came along for some support. Things went very quickly! Since ECSE (Early Childhood Special Education) evaluated him the week before we got to skip part of the appointment and they just need to send the results of that test/evaluation back in to the NICU. Next came the weigh-in, Xander was 17lbs 14oz. So close to 18lbs!!! He was measured at 70cm or 27.5 inches.
First we saw Marla the Nurse Practitioner. She asked what our concerns are about Xander’s development and we relayed the not yet self feeding and gagging issue. She didn’t seem concerned. She was very impressed with Xander grabbing onto the kid chair in the room and using as a walker back and forth to keep busy. She also loved it that when she got out the light to check his pupils that he smiled like she was taking a picture with a camera! (someone must take his picture a lot) Overall she was happy with his progress and went to let Dr Ramel know she was finished and to grab a camera to get a picture of Xander to show the NICU staff how big he has gotten!
Dr Ramel came in and said they are happy with Xander’s progress and not to worry about the self feeding since he is only one year old and that we should wait a couple of months and see if he makes progress before just jumping into therapy. She said it is common for first borns to be slow to self feed since the parents have the time to cater to them as opposed to a third child that needs to learn to fend for themselves or the might go hungry when parents get busy with other children. They don’t want to see us again for another year until Xander is 2 years adjusted!!! That just made me so happy. They didn’t say anything about him not being on the charts for weight or how slowly he is growing, just that yes his curve has dropped off a bit but it is still going up overall.
The day after the NICU follow-up Xander got sick again and lost 1/2 lb over the weekend so we’re back down to 17lb 6oz…. his 12 month weight back in April, so we are starting over on this pound again…for the third time. The good news for us is that they also approved us to switch to whole milk!!!! No more buying expensive formula! Hopefully he will still gain weight at the same rate on whole milk as we will not be adding extra calories with formula, but we may continue to do 2 bottles per day of extra cal formula until we run out of it.
We also had a follow-up MRI back on July 10th for his head. Back in November/December his fontanelle was bulging slightly and during a head ultrasound in December they saw extra fluid in the ventricles. We had an MRI in January where Xander had to be sedated after which the Neurosurgeon said his skull was growing faster than his brain and there was extra fluid surrounding the brain because of that. Also his ventricles had more fluid but were symmetrical so they were not worried.
The follow-up MRI was pretty cool. This time I (mom) got to go into the MRI machine with Xander! They laid him on the table, swaddled him in a big blanket, put the chest strap on, and surrounded his head with foam wedges to both protect his ears and hold his head in place. Then I got on the table on my tummy near his feet stretching out my arms to hold his cheeks in place. They also place a box over his head that has a kaleidoscope type mirror system so when he looked up he could see my face and I could see his eyes.
The table moved into the MRI machine and we played peek-a-boo, I sang and talked to him. He was so good! He got a scared/frustrated cry face a few times but the loud noises of the MRI machine usually distracted him and he would look around and listen. It lasted about 5 minutes and we were done! We had the appointment with the Neurosurgeon Dr. Guillaume right after and they said everything looked great! I was fascinated with the before/after versions they showed us. The MRI back in January showed his head as being almost a perfect circle, and now it is a perfect looking oval human head shape, I don’t know how else to describe it. His ventricles are a little larger than normal but they said everyone is different and his are just big. You can also see his skull is getting more dense. After all the work on head shaping we did in the NICU (changing his position every 4 hours so he wasn’t on one side for extended periods also using tools like a gel pillow or a cloth diaper doughnut to hold his head without being on a flat surface) this made me so happy! No “Toaster Head” for this micro preemie! We have been released from the Neurosurgeon and don’t have to go back for anymore checks with them!
Tomorrow we head back to the pediatrician for his 15 month shots. Poor buddy gets so upset when we even enter the exam room at the pediatric clinic. He starts crying and screaming when you put him on the exam table to take off his clothes and it gets worse when we try to put him on the scale. He tries to cling to me and I have to set him down and walk over to the other side of the room and hope he sits still so we can get a weight. Then he screams bloody murder when we have to lay him on the exam table to get his height measurement. We haven’t had shots for 3 1/2 months but I’m sure tomorrow will re-traumatize him. He totally recognizes the nurse, Brenda, and watches her every move when she is in the room. He is better with Dr Bennett, she lets him play with her stethoscope and the hair tie on it, and he gets to sit on my lap during the exam.
Xander is back to his smiley self today so that made me feel better, and we are looking forward to a short trip with my parents in their motor home this weekend. Should be lots of fun!