June 1: Happy Birthday Makenna!

 

 

Happy Birthday Makenna!

 

 

 

 

Today is her one month birthday!  She has beat one of the statistics.  She has made it one month.  Mom and I had a little party for her.  First, we went out and painted another painting for her bed side.  I called it "Walking with Makeena 2" because I am thinking of doing a series.  These paintings are helping me to deal with what is going on.  They symbloize my hopes and dreams for my daughter as well as my commitment to journey with her throughout her life.  Her journey may be short during this life, but I have a hope of continuing our walk later....

 

 

Mom and I also made some visual stimulation for inside her bed because she is starting to look around more and actually focus on things.  We also brought her a hat that she got from our cousins and took pictures of her.  What a party, huh?

 

 

I have been able to be more involved in her care.  I am changing her trach ties, which I will have to change once per day.  I take her temperature, change her diaper, suction mucus through her trach, and give her baths.  On Sunday, I get to help change her trach beause I will have to do that once a week at home.  I am learning how to do so many things I never had really wanted to learn.  But, we do what we have to.  We have decided to add another hole in Makenna.   She will be getting a gastric feeding tube (g-tube) next week.  This means we will feed her dirrectly into the stomach insted of through a tube in her mouth.  This way she can get that tube out of her mouth and possibly do some oral feeding.  She won't be able to be totally bottle fed, but maybe little bits.  Eventually, if she is able to eat enough, the g-tube can also be reversed.  This will be another step toward home!