Thursday, June 30, 2011


OH MY WORD. Lillian just went to the fridge and said "EEEEE" (long e). I said "eat" she shook her head yes, I opened the fridge and she pulled out a bag of CHEESE....I'm just about to jump out of my skin. WHOOOPPPPEEEEEEEEEEEEEE!!!

Tuesday, June 28, 2011

Feeling better

Lillian is feeling better, her feeds are at least going better. She is still coughing quite a bit in the mornings, but her night time cough seems better or I'm sleeping through it.

Sometimes, I just wish I understood what her body is doing and why. I wish I could peek inside her and fix all those things that cause her troubles. For whatever reason she is prone to feeding intolerance. That in itself could make me a basket case if I let it. I just grow weary for her.

During church on Sunday, our SS lesson was about desire. We were asked what the desires of our hearts were. Before I knew it was coming, ( most of the time I know) tears were streaming down my face. Another classmate was sharing and when she finished the teacher looked at me, he grew concerned and I just stated my desire was to have my daughter be healthy. That was all I could muster. Immediately I was surrounded with friends in the class praying. Being new in our church, few people know the journey we are walking and have already walked. I'm so thankful to have been there at that moment. Later, during the service, the same topic was preached, and I began to think, perhaps the desire of my heart is not what it should be. My child is ill. Medically fragile. While I desire that she be healthy and believe God can take all that away, perhaps my desire should be to accept that she is not. I continue to raise her up to Him. He knows my desires even before I utter them.

Thursday, June 23, 2011


Lillian woke up this morning choking, coughing, gagging, and puking. I went ahead got her off to school bc I thought it was just a morning drainage issue.....BUT, when she got home and I hooked up her feeding, she immediately started gagging and puking. We have been religious with ehr miralax so I know she's not constipated. This incident escalated to the point of what I believe was an asthma attack. She was retracting pretty badly... She spiked a temp and fell asleep in my lap. I called the doctor and wanted to get her seen, she gagged all day yesterday off and on, and didn't get her whole feedings in yesterday either. They scheduled her an appointment. I was concerned that her gtube being ripped out my have injured her stomach....the dr called back and wanted her to have chest and belly xrays. Bottom line, she has sinusitis, parabronchitis, and a paralytic ileus. He put her on a 10 day course of Levoquin and wants us to give her stomach a rest tonight and then very very slowly adding back her feeds and hopefully getting her back to 150 ml feeds by Sunday. The ileus can be paralytic due to shock to the stomach, so it could have been the gtube issue or the fact that I have slowly increased her feeds over the last couple weeks. Always an adventure with my girl. long day.

Monday, June 20, 2011

Remember that appointment

I try, I really try, I think I'm upbeat, I have a positive attitude, I try not to allow all the obstacles drag me down. Today, i'm failing. tired. Mentally tired. Our appointment is rescheduled for July 1. Hopefully, there won't be a need to schedule a nonemergency surgery in her appointment time that week.

Wednesday, June 15, 2011

First day of ESY and a little photo shoot with big sister..

all glammed up!

ESY (extended school year) started today for Lillian. It will run for a month. Then, about a month off and back to regular school year. Summer days are slipping away. ( She had a great day aside from standing out in a thunderstorm 40 minutes wating for the bus, all went fine)

I'm getting psyched for our trip to plastics next week, hoping he will decide to do the prosthetic. We will also be getting her immunology done then as well. Life is staying busy around here and last night I had a moment of sheer, well, I don't know what..but I longed to take the family and go to a beach and have a week of lazing on the beach. I've even thought about it all day. How wonderful it would be not to HAVE to be getting up, getting ready, going to school, going to therapies....sighs...Sometimes, this life just needs a little slow down, a good slow down. As much as I love my life in this very moment, I long for a vacation with my family. Just a time to relax and enjoy each other, no jobs, no schedules....sighs again.

Wednesday, June 8, 2011

Dear Blogger,

I'm getting mildly annoyed with your little bugs....I cannot seem to post comments on anyone's blogs. So, friends, I'm here, I'm reading, I just can't comment....*stomps feet and grunts in fit*