Things we learn along the way

So yesterday Johnson County Infants and Todddlers came out to see us. They are a service that has Occupational, Physical, and Speech therapy for children that are delayed or have a disease that may cause them to be delayed- TSC in our case. So our case manager and an OT came out to check out our girl. Pretty much they saw everything I have been seeing. Her head/neck strength isn't quite where it should be- she is kinda a floppy baby. She uses her right side way less than her left side. (When she was seizing really violently it made her right side flail a lot so it could be from this, or a tuber that is effecting her strength) She isn't really lifting her head up if she is on her tummy- she was doing this at 8 weeks, but not now. She also isn't rolling when placed on her side, which I guess she should be. And they got onto me a bit because the back of her head is kinda flatish-so I need to do more tummy time with her- whoopise! The kid hates it, so I haven't been good about encouraging her to do it. They were encouraged that she is smiling and cooing and making eye contact. They said she is tracking horizontally which is to be expected before vertically so that is good. It was hard to have a specialist confirm even what I already knew. And I know that it is going to be hard to see my friends kiddos pass her in milestones or for her to not hit milestones they have already hit in the same time period. I just want her to have a wonderful healthy normal life so badly. But I guess that is mostly in the perspective we take and what we make normal. Still stings.

So here are some things we are/have learned along the way

Dan and I give her meds differently and neither of us like to be told that the other persons way is better (although I feel strongly that my way is better and he feels his way is better)

Just because she is awake at night doesn't mean that we need to be awake- the kid loves to be awake, cooing and just chattering in the pack & play. We of course are up with her if she is upset, but she usually just falls back asleep quickly after her little chatter time.

It isn't worth fighting the thumb battle- she has found her thumb and loves it, despite me trying to trade her for a binki. I'm over it.

It is important to take care of ourselves in all of this. I have started going to jazzercise and it is seriously awesome. I get to spend an hour working out and taking care of my body and it is fun. I just take her to the childcare there. (Which they kinda freak when I tell them she has a seizure disorder, but I just assure them it is okay, that I am right there in the next room over and to come get me if they need me- so far so good)

And a few other thoughts- I get annoyed when there are dishes in the sink, even if I am the one that put them there. I like coffee ready when I get up- it makes my morning on days Dan has made some before he leaves for work. I pretty much fail at laundry- I have now forgotten to start the dryer about 100 times in a row. FAIL.

Speaking of fail...this is what became of tummy time. A nap with some good old thumb sucking! I can hear her snoring- poor baby has a little cold.

Love, La