Being a mom is WAY more than a full time job.

Yesterday morning we took Layla to see the lovely ladies at the Children's Treatment Centre.. There we saw our physio therapist as well as our occupational therapist. Now that we have more confirmation on type 1 Spinal Muscular Atrophy (still not 100% but about 90%), they have decided to change directions. Instead of working on exercises to develop muscles we need to work on exercises to maintain movement and range of motion. Apparently with SMA (or with anyone really) if the muscles are not used they will start to get stiff and stuck in the one position and then when you try to move them it can be painful. So when she's laying on the couch or wherever i'm just pushing her legs in and out, moving them around, and same with her arms. We have been trying really hard to get Layla ok with looking right because she only wants to look left and already has tightness when we try and get her to turn her head in the other direction. We had her playing with some awesome toys designed for special needs children which I fell in love with and think may be something Layla could be interested in. To purchase online they are absolutely ridiculously priced but they are going to lend us some next time we come hopefully. Next they want to look into starting some hydrotherapy which I think would be really neat. Being in the water will make her feel weightless. At the centre they have a pool that's bath tub warm so I think she would like it.
Our occupational therapist decided it's best not to worry about trying to get Layla to eat solid food or take the bottle because at this point the feeding tube is pretty inevitable from what we've been told. Describing my daily routine with Layla got her quite concerned that I may need some help. She is going to try and set us up with a social worker to educate us on available resources there might be for us. Praying there are some good ones. 

I honestly feel like such a bad mom sometimes. Like I am not the right person for this job. I just can't do it. Spending hours upon hours every day standing and rocking Layla. She won't even allow me to sit and rock her. My back and arms and feet all hurt. Even feeding her is hard work because her latch has gotten weaker and I think she can only swallow so much at a time so there's a lot of overflowing milk. I have to hold her head steady with one hand and use the other hand or if positioned correctly a leg to help her breastfeed. If I don't hold her close she will just come off. Also, I just feel like she cries so much these days. If my time is limited with her I want to really enjoy them.. But often i'm not.. How awful am I...? I do love her with all my heart but it's hard.. Like really hard. My husband would kill me for saying this but maybe I'm not cut out to be a mom? These are just a couple of the thoughts I have throughout my day. *sigh

As for now it seems like everyone is waiting on our neurologist appointment to see how we will move forward. And I am right there with them. This guy better live up to our expectations. We want answers and more certainty! Thank goodness it's only two weeks away now. I'm literally counting down.