Fake it till you make it.
If it was easy, everybody would do it.
Put on your big girl panties.
Big girls don't cry.
Those are all phrases that I have repeated over & over to myself throughout the past year. But the one I say most often is "It will not be like this forever." I began saying it during the long, hard days back in the PICU when I would go into the public restroom and brush my teeth early each morning and late each night. (Many times with tears in my eyes.)
It is good "positive self talk". The phrase applies to the hard times as well as the good times. It will not be like this forever. I really believe it.
This past week was a BIG week. It was the final week of the five week narcotic medicine weaning plan. Whew. We made the final wean of methadone Monday and Ativan Wednesday. (Methadone is a synthetic opiate/analgesic used to treat moderate to severe pain. It is a "man made" heroin. It was a step down from the strong IV Meds she was on in PICU. Parson has been on the drugs for about 6 months.) Bless her heart, she is such a little trooper. It has been extremely hard for her and she has had significant withdrawal symptoms. Her sleep pattern is completely out of whack and most nights she only settles for about 45 minutes at a time. The old alarms that used to alarm in the night to tell me she needed oxygen no longer alarm because her lungs are doing GREAT! The new alarms are those of a baby that has finally learned how to cry & fuss. What a blessing! She is unsettled from drug withdrawal, has diahrrea, chills, sweating, is irratable and on top of all of that she has a whole mouth full of teeth trying to come in. She is also still having trouble swallowing. In addition, she is having a significant amount of reflux - especially when laying down. Recent tests confirmed the reflux, which is a bummer since she had a Fundoplication surgery prior to transplant to take care of the reflux. We will meet with the surgeon next week to schedule another surgery for a repeat fundo and repeat repair of an umbilical hernia -- Looks like she blew both. It will not be like this forever.
My sweet friend gave me a new necklace... It has a new phrase that puts things in perspective. It says... Life doesn't have to be perfect to be WONDERFUL. Love it. It certainly fits for the last week of drug withdrawals .... Gonna add that one to the "positive self talk" phrase collection.
It has been so great to have our little family back together for the past few weeks. Darby is crazy about Parson and Parson is absolutely nuts about Darby. Rodney & Darby left to go back to Jasper and resume their work/school routine. Them leaving has brought on a whole 'nother level of withdrawals for Parson and me both. Rodney took the training wheels off Darby's bike yesterday and had plans to work with her over the next week to help her learn to ride without the training wheels. She made quick work of that little chore and is riding on her own. Time flies when you are having fun ... It will not be like this forever.
We will get to join them at home before long. As of now, we are scheduled for our three month post transplant evaluation the final week of August. If all goes well, Parson will receive her final infusion and should be given clearance to return home sometime after that. In the meantime, we stay really busy with dr appts, physical therapy, occupational therapy, blood draws & infusions. Other than the withdrawals, Parson is doing really GREAT! Thank you Jesus for this new baby. I will take a fussy baby over one that is fighting for her every breath any day!
In everything giving thanks rejoicing always... (Even withdrawals) Because it is not gonna be like this forever.
OT using a sucker to work on swallowing & oral motor skills
My Uncle Willie says dumdum suckers are great.
Darby took Daddy grocery shopping.
And she's off!