Monday, May 10, 2010

Advocating... The Full Time Job

I have had a good day sprinkled with a few bittersweet moments.

It is always nice after a weekend that is jam packed with busyness to have a day that is more laid back. Today was that day.

Makenzie had PT first thing this morning but wasn't really digging it. She was of course happy but seemed a bit more flexed then usual.

Today was also a day for laundry and cleaning out Makenzie's closet. Man she has grown so much since last summer! I was able to get rid of a bunch of stuff but realized that there wasn't much left for this summer. Bummer.... guess I will have to go shopping! Oh the torture!

Then it was time once again to try for what seems like the millionth time to resolve the issues I have had over the last week with The Children's GI department. I have yet to hear back from Makenzie's GI and I am really starting to get past frustrated and on to irrational. All I want is 10 MINUTES of the man's time.

I have talked to 2 nurses and the patients reps at the hospital several times. It is because of this very issue that I had the week I did last week. This is the only doctor that has not taken the time to speak with me. This is the doctor that gave a recommendation, then back peddled and said that he couldn't make a recommendation, and then put orders in for surgery with out talking to me, won't get us in for an appointment until May 21st, continues to write Makenzie's prescriptions but won't call me. Ten minutes... that is all I want.

This is where advocating for your child becomes a full time job. This is where even though you are at wits end you have to keep pushing, making yourself heard and being the thorn in the side of anyone who has anything to do with what you are advocating for. Non stop!

Late this afternoon I finally got through to the main GI nurse who pretty much said the same as all of the others.... "I will send him a message letting him know you would like to speak with him." Yeah great... just great! So tomorrow after therapy, if I have not talked with this said doctor I will be heading down to the hospital. Maybe the real face of the child they continue to push aside will motivate some productive action.

What Makenzie has accomplished in the last 10 days is NOTHING short of a MIRACLE.

From talking to other mothers and reading about this type of transition I stand in awe. She has been fed into her intestine with nothing in her stomach all night long for over 2 years. She has had little opportunity to feel hungry and eat during the day durning this time. Now she is being feed 3-4 times per day into her stomach getting only water at night with very little reflux and no vomit. She also has started showing signs of hunger.

Makenzie has now eaten through her mouth multiple times per day for several weeks which is the longest run on eating she has made without refusing. She is eating 8-12 oz by mouth and actually enjoying it. I am so proud of Makenzie. Her doctors and therapists are proud of her. Her brothers, grandmas and grandpas are proud of her. I feel so blessed that God has given us this huge MIRACLE and step in the right direction!

Please pray that tomorrow will bring understanding to those who do not understand this. Please pray for strength, energy, and peace. Please pray for God to walk before me and protect Makenzie and this family from the ignorance of this world. And of course as always continue to pray for Miracles!

Believe... Prayer Works!


Catherine said...

Way to go Makenzie! And mom too- you are so instrumental in your girlie's progress :-)

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