Wednesday, November 25, 2009

Exhausted

Life has become exhausting. I love it, don't get me wrong. But each day I wake up hoping and praying for a miracle for my baby girl. Each day comes to an end with me still waiting. And each day I am continually reminded that MY timing is certainly not GOD'S!

McKenna has done great since she got back from KC. She has improved in so many areas and I am so proud of her. She is sitting up - with support of course - and can even "balance" on her own for up to ten seconds at times. Her head support has improved so much. When we came back she couldn't hold her own head up when sitting or being held. She still can't hold it up after short periods of time because she gets so exhausted but the increase on time she holds it up is great.

McKenna can now play with toys infront of her when laying down. She is enjoying the playmat and pulling on the things dangling in her face. She still can't grab things or really reach out for things when sitting, but occasionally she can do this too and those days are exciting to see.

She is still not eating, but at least she is allowing us to touch her mouth and she makes a game out of it. She sticks her tongue out occasionally too, allowing us to touch it. Speech Therapist says this is great step forward. She also has told us though that each day she doesn't eat is that much closer to her never eating again. And that eating issues can cause speech issues. Talk about pressure to get her eating TODAY.

The thing is that there is so many areas that McKenna has improved but so many areas she still needs to grow or strengthen. Each day I wake up and go through a list in my head of what she needs to work on, how I will work on it, how many therapists will see her that day, what will the follow up be, what will her response to them and treatments be and will we see any improvement. It grows exhausting and depressing. I want to enjoy my babies. Want to hold them, cuddle them, play with them and let them know that life is good, but instead feel like I am continually shoving information and techniques down McKenna's throat just trying to get her one step closer to where Keaton is or where the babies should be with development.

Keaton in the mix of this seems to get ignored a little bit during the day. I do my best to spend time making him laugh, helping him sit, play with toys, but so much of my focus is on getting McKenna better that sometimes thirty minutes will go by before I even notice that I haven't worked with him on anything. It's difficult juggling two babies.

I am so grateful to be a mom and even with the exhaustion of the day - emotional more than physical - and the people coming in and out of the home, and the ongoing activity and craziness I absolutely love my babies, love being a mom and love that God has blessed us by being parents to these two gorgeous children.

Tuesday, November 17, 2009

Teething

Woo hoo. Last night Keaton started cutting a tooth on the bottom front. It has broken skin but it doesn't really show yet, you can just feel it. What an exciting thing to discover. He hasn't been too fussy until this afternoon/evening. So we gave him a little Tylenol. He has been really tired all day though and seems warn out. Excited for the teeth that show. He is going to be adorable with them.

Saturday, November 14, 2009

Scootin' and Pushin'

Poor little Keaton wants so badly to crawl, get around on his own and be independent. He can't even sit up yet on his own but is already trying so hard to scoot and reach things. First Steps is teaching us how to help him learn to crawl or grab things. Really it seems to frustrate him more than anything.

Keaton talks all the time now. He grunts so loud when playing and interacting and his laugh is the most wonderful sound a mother could hear. He is a true joy to watch and play with. We are so blessed.

We are working on a few different things with Keaton. Sitting up is the main one. He can sit on his own for about five seconds. Daddy says it's just mommy balancing him, but I still consider it "sitting". We are working on him crawling too, standing, talking or saying coo words and much more.

Keaton weighs 15 lbs 8 oz. He is eating oatmeal daily and we will give him baby food starting this week. He is 25 inches long and can finally use his toy that helps him stand on his own if we put pads under it so his feet can rest flat. It's fun to watch him on his own.

McKenna is doing better too. She is more energetic and reaching out for toys more. Still not doing much on belly time. She doesn't have back or arm muscles really, but you can see her trying so hard to push herself up to see what's going on.

McKenna has the most amazing smile. She scrunches her nose and opens her mouth like she is going to bust out laughing. It is contagious.

We are working currently on McKenna sitting up, standing with support, belly time and lifting her head on her belly. Also doing sit ups to build the arm and back muscles and trying to get her to use her left hand more - she is very right side dominant. It is so fun to watch her growing and to see how quikly she is catching on to things.

McKenna currently weighs 13 lbs...yes, she hit 13 lbs last night and we were so excited. She is 23 inches long. She eats special formula but is still fed through a feeding tube. Can't have anything in her mouth without it causing her to gag or retch, but when we feed Keaton oatmeal each day we offer her water on a spoon so she learns that she is suppose to eat. Occasionally that makes her gag too but for the most part she keeps her mouth shut or just grins at us as if to say "goodness no...you ain't gettin' that in here". Yes, her grammar is amazing.

Wednesday, November 11, 2009

Hanging On, Kind Of

Have never felt so helpless, stressed, sad for my baby girl. Watching them dig a hole into her stomach with scissors yesterday, without pain meds or numbing cream, was heart breaking and makes me feel so guilty. Not sure what else I can do to help her or how to make her feel better or get better or move forward with a healthier future and it is so frustrating that doctors here have no answers, doctors in KC don't care, and we are left here as parents helpless with no direction or hope. Praying tonight is the night of miracles and that God heals our baby and that this is just one more stage to her testimony.

Sunday, November 1, 2009

Sitting and Grunting

McKenna is really making improvements. She is starting to sit up better with support and hold her head up a bit more. Still not looking around very much when laying flat or when sitting.

She is starting to moan and make more noises too. Her laugh is more often also. These are all great things to see. We are so excited for her to be a babbling baby.

However, I think McKenna may be overheld a bit. She fusses when she gets really tired or when she wants to be held and it is pretty loud. The second mommy picks her up though she is a happy girl and shuts her eyes right away.

Keaton loves his little gym mat and is reaching out to touch everything. Grabs noses and mouths when being fed. Starting to tug on his feet more.

He is more and more interested in McKenna and hates nap time more each day. He is actually to the point he starts breathing hard when we take him over by the crib because he knows he is going to have to sleep. Then he will scream for a good while until he falls asleep. Will be funny when he is a teenager and loves sleep.