Wednesday, August 18, 2010

Mickey and Therapy

In NICU they continually reminded us with preemies they take one step forward and two steps back. It was a depressing thought, but we found it to be true and unfortunately it seems to continue to be the saying for McKenna.

We have been so blessed and grateful to post positive things and the wonderful improvements we have been seeing, but in the back of our minds we remains the long journey she still has, mainly with the feeding.

This week we were finally able to return to Myer Center for feeding therapy. McKenna has not had it for three weeks (therapist gone two weeks and then we were sick last week). To make a long story short the therapist was in agreement with Kyle and me that McKenna has not made improvement on the feeding side of things for a couple months. Well, she has made MINIMAL improvement is how she worded it. If McKenna was not eating solely due to an oral aversion the therapist things McKenna would be making more progress than she is currently making.

So what does that mean? Honestly we aren't quite sure. We are going to decrease feeding therapy at the Myer Center to every other week since weekly isn't benefiting her. The therapist is recommending McKenna go to a feeding clinic (closest one is in St Louis) which we are waiting to see if this will be covered by insurance and how long we would be there (looks like 4-6 weeks) and what all it entails. We still have not found a cure for the retching which could be a big cause to her not eating, and KC has failed as far as follow-up and direction.

We are a bit discouraged, overwhelmed and down that our baby girl is still having to face this battle. August last year she was still eating out of a bottle, was pushing herself up when on her belly and was happy as a clam. Fast forward to August 2010 and she is just now crawling (Though we are so grateful and proud of her for that) doesn't talk or babble and still appears to be in a ton of pain with the retching spells. God? I know you hear us...please heal our baby!!!

Oh Poop

My kids loveeee bath time. Keaton always goes to the bathroom door and says, "Baf, baf" just begging and pleading to get in the water. It's adorable, but bathing two babies is a lot of work and we don't leave the house much so I still only give them baths everyother day.

Well tonight Daddy is out of town, we had spent time out of the house and at a restaurant which is obviously full of germs, Keaton had food in his hair and we were bored. So when Keaton asked for a "baf" I agreed. Little did I know that he would give gratitude for the bath by pooping on the floor once he got out. Not only was it on the floor, but on the carpet. I just need to be grateful it didn't get smeared INTO the carpet, right?

Then of course I got the babies changed, all ready for bed and put them in familyroom to settle down and McKenna pooped her pants and when cleaning her I managed to get it all up her leg. I think they are dirtier now than they were before their baths.

And yes, I DID just write an entire entry about stools. You're welcome readers.

Thursday, August 12, 2010

Not Any Stronger

Feel like as we face battles we grow and are strengthened but honestly I am at the breaking point and can't seem to pull myself back up. I want to cry everytime I see my daughter retch. The painful look on her face, watching her tighten her entire body and gasp for breaths between each gag, the feeling of her stomach tightening as the fights for each episode to end. And the entire time we can do nothing but sit and watch, oserve, talk her through it, act like it's not happening and pray that she will never have another.

The feeding is exhausting. She gets stuck in one place and can't push through and I don't know how to help her. Therapy does the same thing and has been doing the same thing basically since October which discourages me from wanting to take her anymore. But at the same time if I were to quit taking her I feel like that is me giving up. I want McKenna to know when she is older that I did everything possible to help her not have pain or discomfort and to help her have a normal life.

My 24 hours of being down as stretched out to be over a week. I am ready for you to heal her now, God. Please.

Thursday, August 5, 2010

Down and Frustrated

When my mom is down or discouraged she always says, "I am going to allow myself 24 hours to feel this way, then I am done. I am not going to stay here long." That's the attitude I need to apply to my life right now. Feeling really discouraged and down about McKenna's lack of progress with the feedings. She started opening her mouth, which is a huge step forward as everyone reminds me, but that was several months ago. She still spits out any food that goes in her mouth and swallows less food with an open mouth then when her mouth was closed. I feel frustrated and tired of trying to feed her everyday and I know tomorrow I will once again sit her down three different times, get out several different foods for her to taste and she will fight me on opening her mouth, or will open her mouth and spit out all the food. Doing my best to be thankful for the progress she has made. Trying to focus on the thought that when she moves forward in one area (crawling and sitting up) she will go back in another (eating) but that doesn't really encourage me. And she really hasn't gone backward, she just is maintaining where she has been the past few months.

So, something positive, today she tasted chocolate milk and didn't gag or retch on it. She took over 30 sips of it and although they were very small sips, they were still sips and I am grateful for that.

McKenna doesn't open her mouth wide, but she is at least cracking it open and although that has been happening several months now it is still a step in the right direction and something that she needs to do inorder to get to the next step - swallowing food.

McKenna isn't swallowing the food, but she is trying new flavors - chicken, green beans, broccoli...which is a great step too because she shouldn't be stuck on apple/blueberry mixture forever.

So there are positives, and she is truly doing her best and I know that. I just need to allow myself to be down for 24 hours and cry and vent and then move forward knowing tomorrow could just be the day the Lord choses to heal her.