Friday, October 23, 2009

Still hard to believe

Lillian has been doing FANTASTIC. Her night time breathing is a little shaky, ecspecially since the stoma is so so tiny now. It truly is unbelievable what a difference it has made to have it out. First off, her feedings have been great. Hardly any vomiting. I've been able to increase the rate and volume that she is getting. She is absolutely full of energy. She is doing things she has never done before. One day, she just walked around looking up. She is babbling nonstop and started saying ma-ma the day after we got home. She giggles ALL the time. Something I don't think we noticed because it wasn't enough air to make noise. It is hysterical. She has found that she can make a high pitched scream and laughs so hard at herself. I could go on and on.

We are getting ready for transition out of First Steps into the school system..our meeting is Monday.

We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.

Thank you thank you thank you all for your support and prayer. God is good.

Wednesday, October 14, 2009

A New Leg in the Journey

So---PTL it's out. Gone, goodbye trach. Thank you all for prayers. We just returned home today and I think I'm still absorbing it all. There is much to tell, but I dont' have time right now. i will leave you with this picture....

Monday, October 12, 2009


First off, PTL Lillian is finally mending. Last night was the first night of no round the clock treatments. WAHOOO! I'm so relieved she is healing. I know God's hand is upon her always.

Tomorrow, well, tomorrow will be the longest drive EVER to KY. I think I haven't really had time to really consider things bc I've been so consumed with her sickness. I already have that feeling of not knowing how I'll feel when they come out of surgery and give us the word. Tears, I know there will be tears either way.

Is it wrong to throw yourself on the feet of the doctor?

Dear God, please be with Lillian tomorrow as she endures yet another surgical procedure. Give us grace to accept the outcome and your will for Lillian's life. In Your Name, Amen

Saturday, October 10, 2009

Three Days

Since my last post and I'd love to report that Lillian is infinitely better. Notsomuch. Take note of the time, I'm doing her three am treatment and thought I might post a little update. She does seem to be on the upswing, I will say. Her cough is becoming more productive, I'm not sure there is great improvement in her wheezing, hard to tell when she coughs so much. She is stuck to me like glue, so clingy. To add to that we had to battle the constipation battle today (or should I say I had to battle it.) nothing like forcibly holding your child over the toilet in hopes that the position will be better for her. ACK. I think we are just going to go forward with the hospital trip, let them make the decision when we get there. I just don't know what to do. It is difficult to know what the right decision is for my sweet angel. I'm so afraid if we cancel, she will definitely lose the opportunity for decann. Matt has worked evening shift all week which has been hard, but has allowed me to catch a few winks in the mornings before he leaves, since my current bedtime has been running between 3-6. That just wears a person out. PTL we have been managing here at home, as I would be even more exhausted at the hospital.

Tuesday, October 6, 2009

Last Night

Was terrible. I really did think I would have to call 911. She absolutely could not breath. She was coughing and spasming worse than ever. I had to stand outside in the cold air with her just to get her some relief, several times. I was really pushing her treatments giving them in three hour increments and that still really wasn't helping all that much. She coughed the entire night. I have pulled out the prednisone and started that ball rolling. We have her on everything possible, pulmicort, duonebs, tobracmycin, claritin, and prednisone. I have used everything in the arsenal to try to help her. I'm praying that we saw the worst of it last night. Her poor little body must be so sore. Any other suggestions of any kind??

Monday, October 5, 2009


Lillian has continued to run fevers ranging from 99-105. Her breathing has gotten worse and I am now up all night doing breathing treatments around the clock. It is exhausting and she has to be hurting from the gut wrenching, chest racking cough. UGH. We have a little over a week to get her back to healthy so she can have her procedures the 13th. I pray we are coming to an end of this cruddy virus. BLECK.

Thursday, October 1, 2009

October 13

That is the day. The day they go in, do the bronchs and decide if her trach comes out. Here come the nerves...