1st day jitters

Knock em dead big boy!

Results Recap

I received a phone call from the doctor we saw at the U of M. She received the blood work back and has provided us with the following information.

·         Rylan has low vitamin D, she recommended starting a multi-vitamin for him.

·         Rylan has low growth hormones, this can link to fatty liver (reason we went in the first place). It is of concern so she wants more testing done.

·         She wants Rylan tested for celiac disease.

·         She would like the thyroid test repeated; it was showing as lower than normal.

·         She would like an MRI done to evaluate his pituitary gland.  

·         She wants us to meet with a pediatric GI to review the above then go back to see her.

So we are going to get to work on that list now. In the meantime Rylan will be starting daycare at his best friends (Cece) school next week.  It is a bittersweet, we are all looking forward to that change in routine, especially Cece!

Totally tubular check up

Today was Rylan’s 18 month check up (really 20 ½ month) it is hard to believe we have not seen his pediatrician for 8 months. At our last well visit exam Rylan had officially failed every milestone since birth which resulted in our referral to Gillette’s to get evaluated. We have been hard at it since that appointment and it has made a world of difference. She was so impressed with his progress (DUH!)

Today when she ran through the typical questions to gauge his development I answered yes to almost all the questions.

1.      Does he know what to do with a crayon….YES

2.      Does he feed a baby….YES

3.      Does he know what to do with a brush….YES

4.      Does he brush his teeth….YES

5.      Does he eat with a spoon….YES

You get the point….

The doctor will be following up in regards to the appointment at the U of M last week. We are hoping to have a different strategy plan and a second opinion on the liver ultrasound.

We will be getting out the bubbly (apple juice) tonight.

Below is a video of the latest source of entertainment for the big boy. Sorry about the pan clattering in the background, it was dinner time.

The wild goose chase for answers continues

Can you tell the frustration in the title of this post? It was a long painful morning for the three of us with little answers and more invites to meet new doctors. For some reason we were anticipating this appointment to provide us with answers and solutions to assist Rylan, no such luck.

We were referred to the U of M metabolic clinic by the Geneticist at Children’s after recognizing an abnormal liver from Rylan’s ultrasound. She said it looked to have a fatty texture; this can be a result of a metabolic disorder. We assumed we would be discussing this during the appointment but we didn’t spend much time on it and in fact the doctor didn’t mention it until I brought it up. Instead we spent a couple hours talking about his past (while Rylan got crabby) then an exam from the consultant in training. We met the doctor and she said she wanted some screening done today for a large number of disorders. She referred us to Ophthalmology at the U of M to review his eyes closely. We will head back to see today’s doctor after we are seen by Ophthalmology and have another ultrasound done on his liver. Rylan had more blood drawn today. The nurse in training had a hard time finding a good vein so after three attempts, Rylan was not happy. She eventually got what she needed and we should get the results back in a few weeks.

I am going to follow up with the Geneticist on the liver as the abnormal liver conversation must have been lost in translation. Our pediatrician urgently wanted us to be seen because of it and then today it was not really addressed. Maybe it means one less thing to worry about; we will get to the bottom of that soon.

Rylan waiting patiently (before he lost his patience) for his exam 





Graduation

We need to start planning for a big graduation party because Rylan is graduating from physical therapy at Gillette’s. He has one more session and we are done, he has ACHIEVED all goals.  They were pleased to see this man can walk and stand up in the middle of a room unassisted. See how proud he is of his accomplishments. Almost as proud as us.