I am so sorry it has been so dang long since I last posted.
It has been a very long last couple of weeks.
To start with Makenzie's pump has been refusing to infuse her water. It doesn't seem to matter how many times I trade the pump out for a different one it still tells me all night that there is "no food". This issue has landed me watching her pump for about four hours every night from about 10pm until about 2am.
Then to add insult to injury poor Makenzie got the cold of the season.
She woke up on Tuesday morning with a runny nose and a low grade fever. Tuesday was phenol block day at the hospital and despite her cold symptoms we went ahead with the anesthesia and procedure anyways. She did well and we were back at home a bit groggy and nauseated but no worse for the wear.
Wednesday Makenzie woke up with a full fledged cold. No matter how on top of Mucinex and suctioning out her little nose Makenzie could not breath...... or sleep for that matter. I took her to urgent care to make sure she did not have strep (which her brother was diagnosed with on Monday night) or another strain of the flu. She had neither. We spent most of the night sleeping while sitting on the couch.
Despite her cold Makenzie and I were asked last week to bring the power chair downtown to meet with the therapist who fitted her for the chair and show off for a bunch of big wigs who were potential donors to the clinic and show off she did!!!!!!!!!! Makenzie was a bit freaked out when a bunch of tall men walked in the room sporting suits, ties, and shiny black shoes but after about 30 seconds she got on with her showing off! She showed Ms Kelly and all of the business men how she could turn and go straight. Makenzie felt like the room we were in was not big enough and tried a couple of times to head out the door and into the hallway. We adjusted her switches a bit and determined that her Aspen seat needs another overhaul because Makenzie has grown so much!!
Thursday Makenzie did not wake up feeling much better. However we had a big dinner to attend in honor of Makenzie's aide at school who was receiving a very prestigious award for being a rock star at what she does. So about 1:30pm Makenzie got a good full body rub down from her massage therapist and then took a 4 hour nap getting up just in time to get ready for dinner.
We drove down to the dinner with Makenzie's massage therapist who just happens to also work for the school district to honor several AMAZING people. We had a GREAT time. It was so much fun to see so many of the inner workings of the district in one place and made me appreciate Makenzie's school even more then I already did if that is even possible.
Makenzie slept pretty well on Thursday night which was great for her but her annoying pump once again kept me from resting and I woke up Friday morning ready for a nap.
Friday Makenzie went to school only long enough to receive a star award and head home. She was honored for the student in her class who has made the most academic progress this trimester. Watching Makenzie go up with her aide and receive her award made my heart almost explode with pride. When they called her name the gym exploded with applause and even her massage therapist was there to watch her be honored! So dang proud.
Then we got to go back to the school in the afternoon to watch her big brother get the same award. I am not sure my heart could be any full of pride as it is right now!
After Makenzie's sinuses spent most of Friday draining I was convinced we were at the end of this cold until she woke up about 12am with a seal bark for a cough. CRAP! We spent a good long time in the bathroom breathing in steam and then another long will on the porch letting the cold air clear up her airway before sleeping the early morning away sitting up on the couch again.
Saturday there was no need for a decongestant because there was no drainage. I gave her a dose of steroids to help with the croup and she slept all night!!!!! Too bad her feeding pump did not cooperate. It kept me up into the wee hours of the morning once again.
Today just when I thought this was all done her drainage is back. I am tired. I am cranky. While it is some of the most precious time spent with Makenzie, my body hurts from sleeping on the couch with a growing girl on top of me. I have said mean things this week to people I love out of my exhaustion and frustration. I have been short with my kids and my house is a wreck. Please pray that Makenzie gets to feeling better soon. Pray that her pump decided to just run tonight and I get some sleep!
Believe.... Prayer Works!