Living and Loving Life

No news is good news right?! Seems my posts are getting farther apart as we continue to adjust and enjoy our new "normal". Lots of things have happened over the past week. Many clinic appointments and therapy sessions. Filled with lots of playtime, hugs, love and smiles and a tea party :)

As for Elizabeth's breathing status. Her lungs continue to do amazingly. She is still totally off of the ventilator. Her trach is capped (meaning she is doing all of the work of breathing) pretty much 24 hours a day. Since we are keeping her trach capped all the time now, she has started needing oxygen during sleep. So during nap time and at night we have been putting a nasal cannula on her to give oxygen. She will be admitted to the hospital on Monday in hopes of decannulation (taking her trach out). We don't know how well she will do with this, if she is able to keep her oxygen saturation up and is not struggling to breath then we will be returning to our apt here in Houston - TRACH FREE. If she doesn't do well with it, they will just put her trach back in and we will continue to work with her and try it again later when she has more strength. The biggest issue is that her airway is so used to have the trach in it that alot of the muscles are a little weak/floppy and can collapse. So we wont know till we try, but at this point shes doing well enough to try it.

As for feeding issues. She still gets all of her nutrition through the feeding tube.The throwing up has gotten alot better, she only does it once or twice a day now compared to the 10-15 times a day the first week we were out of the hospital. She is doing alot better with taking baby food by mouth. She gags and makes herself throw up with any sweet fruits/veggies, one of the meds she takes by mouth is sweet and she now associates everything sweet with that. So we started giving her meat flavored foods, she doesnt eat alot but anything is better than nothing and we are slowly making progress. We have also tried giving her juices, different formulas, and whole milk in her sippy cup. She spits all of it out, but LOVES water. She has occupational therapy twice a week, and we work on alot of her feeding issues and her fine motor skills.

As far as physical therapy goes, Elizabeth has that once-twice a week depending on scheduling. She still doesn't roll over or push herself up. Part of her developmental delays are related to being so sick for so long and just having a major surgery 3 months ago, but we also have to remind ourselves that she does have some issues with her brain. So its sometimes hard to tell what the cause of the delay is and just how hard we should push her. There is a good chance she will always be delayed in some aspects, but we will work with her as much as possible and make sure she has the best therapies and equipment we can provide for her. Yesterday at PT we discussed ordering a stander for her. Its a contraption that we strap her into and it helps her work on weight bearing through her feet/legs and will help strengthen all those muscles. There is a company in Nashville that we will use to get the stander from, so we are starting the paperwork now and by time we get back to TN we should be able to just pick it up during one of our trips to Vanderbilt. Elizabeth continues to progess with babbling and making noises, but no words yet. We had speech therapy once last week and are still trying to get on the schedule. Therapy here is a little difficult due to lack of therapist, so we are hoping once we get home, we can get a better schedule for PT, OT, and ST together and once its more consistent the progress will come faster. Of course Matt and I work with her alot, but we dont know all the trick and tips that will help her the most.

So our "normal" life lately has consisted of visits from my mom and Matts grandma. A few dinners out in restaurants, a walk outside near our apartment, a few trips to Target, and a trip to the mall. And yesterday she was part of a photo shoot for LifeGift, the organ procurement center here in Houston. Elizabeth's picutre and story will be used to help promote organ donation awareness.  Elizabeth does really well with getting out and about, I think I stress out alot just worrying about all the equipment we have to take with us. Since she still has the trach we have to take a suction machine, oxygen tank, a bag with extra trach supplies/ambu bag, all her medications, her pulse ox machine, her feeding pump bag, and regular baby stuff. Granted packing and getting out is ALOT easier now than when she was on the ventilator, but it takes a bit to get her "ready" and out the door. I think it will take a little getting used too if we are able to get rid of the trach, to not have all these medical supplies with us all the time. But its ALL worth it!! I am thankful for everyday that I get to share with her and I remind myself how lucky I am that she fought so hard to stay here with us.