This is the “mama” take on all things development for the boys as of 9 months old (adjusted age). Unless I differentiate, I am referring to both boys.
This is primarily for my records, so if it seems like I’m talking to myself, or filing away ideas for parents going through the same things…I might be. No shame in skipping straight to photos!
We were concerned Sabril could impact their vision negatively. Instead, I have noticed an improvement in the boys in the last few weeks. Tracking is still difficult, but they are working harder at fixating on faces, especially during bottle time. They will also find light (lamp, tv, etc) more often when relaxing. I believe they each favor their left eye a little. I believe they favor their mama a lot. 😉
Continue to offer items they can try to focus on and that keep their attention for longer periods. Faces, Lights, etc.
The boys are making more sounds! Most of the time it is an open-mouthed sound. But we frequently get the “G” sound, and Landon now makes the “M” sound. Landon also yells…like an old man…after he coughs.
I am still dabbling in feeding them tiny amounts of stage 1 foods via a syringe.
I continue to talk to them frequently, as well as make plenty of silly baby sounds. I repeat their sounds back to them.
We will have a feeding study soon, and start weekly speech therapy not long after. In the meantime, I continue to massage their cheeks, and brush their gums.
They respond to voices, and will turn their heads toward me if I talk to them from the side. If they are both awake and one starts “babbling”, often the other will join in.
As mentioned last time, I can use sound to get them to turn their head. While that isn’t necessarily auditory therapy, I use their response to sound as a way to encourage movement and improve their head control.
The biggest improvement here would be that both boys can get their hands to their mouth very easily now. Nolan’s hand is his favorite snack in fact! And sometimes Nolan’s hand is Landon’s favorite snack!
Grasping toys, holding fingers, and getting their hands on their bottles during feeding.
We’ve seen significant improvement in head control when in an assisted sit. They still let it fall forward or backward, but they can hold it steady for longer periods. They also do well during an elevated tummy time. (Positioning them on an exercise ball for example).
Nolan’s neck is doing much better, and we managed to avoid the need for a helmet. His head is still asymmetrical, but is so much better than it first appeared to be trending. He still has a right side preference, but will keep his head in midline sometimes, and even chooses the left side on occasion.
When they are awake, I spend more time holding them by their shoulders so they are working those neck muscles. We also lean left, lean right, or do tummy time on the exercise ball.
Nolan gets frequent neck stretches.
We wrapped up with local Help Me Grow yesterday, and had our last local PT appointment today. Once we get settled in the new town, we will have weekly physical, occupational, and speech therapy, as well as their early intervention program. Busy busy busy! So thankful we have the opportunity to do what we can to help the boys!
L is on Keppra (3.2) Trileptol (2.7) and Sabril (1750 mg per day).
N is on Trileptol (1.2) Sabril (1250 mg per day) and Zantac (1.5)
The obvious development this time is the onset of infantile spasms. The boys were diagnosed with West Syndrome, which seems like an official way to say…they have infantile spasms. They are very common with Liss, and very difficult to control. Each boy has multiple per day, generally under the 5 minute mark per cluster. It is disheartening, but not defeating.
They are such sweet happy boys! They are sleeping great most nights now, and in general are very content. They love to cuddle, and continue to show gradual changes and improvements. It has been so good to see their eyes open more, and their smiles are simply addicting.