Firsts and Nexts

Lots of good firsts for Lillie the past couple of weeks.  We thought we would share them with you.

Lillie is now 16 months old.  As we have mentioned, Lillie has been delayed in her development but the good news is that in the last two weeks we have seen some significant progress.

Lillie has been trying to roll over more.  She still hasn’t quite gotten the hang of completely turning over but she keeps trying.  If only that one arm would get out of the way, she would make it.  She is also doing more practice eating – not enough to count as nutrition but her swallowing seems to be coming along pretty well.  Now that the cleft palate is closed, she’s definitely having a better time.

Lillie is also now able to sit up on her own for 20 to 30 minutes on the floor with no extra support.  She is even starting to play with her toys while sitting, so we know her balance is getting much better.  She is not tripoding too much and is starting to learn to catch herself when she falls.

Lots of progress the last couple of weeks.  We are even being told by all of her therapists that she is making slow and steady progress.  Lillie rocks!

Next up, on Tuesday, she will have a bunch of sedated tests at Dell Children’s hospital.  Lillie is going in because several of her doctors want to check on a things that require her to be sedated at her age.  Here is the list:

Ear Tubes and Hearing Test:  She needs to have a larger set of ear tubes placed.  This was supposed to be done when they did the palate surgery, but there was a scheduling issue that prevented the ENT specialist from being there.  Lillie has never fully passed her hearing tests.  We know that her ears have normal structure and that each ear works, but there is still some question about whether there is some diminished hearing that needs to be addressed.

Pictures of Her Abnormal Optic Nerves and Eye Exam:  We know Lillie has some vision issues.  She can’t tell us what they are but, there is evidence that she does.  The ophthalmologist said her optic nerves are abnormal.  Lillie being Lillie, her condition is unknown to him.  He wants to take pictures and show them to his colleagues to see if anyone else has seen it.

CT and MRI of Her Spinal Cord:  The orthopedist wants to check her spinal cord.  Lillie has a few hemi-vertebrae which causes her scoliosis.  He wants to be sure the spinal cord is not being affected.

There you go.  All caught up on Lillie’s goings on.  Sorry we missed you last week.

Wish us luck on Tuesday.