Feeling Thankful...

For every good and perfect gift from above

For the sparkle in my son's eyes

For every life-giving beat of my daughter's heart

For the circle of love that embraces us
Through each treasured moment with family and friends

For the strength to give thanks in every circumstance

For the hope that comes from knowing Him

Pray for Nonni

Please pray for my mom, who many of you know has been battling metastatic breast cancer. Our family has been through some tremendous trials in the past four years, and this year has brought the worst we've experienced. In July we discovered that the breast cancer diagnosed and treated four years ago made its way to the bone. It turned out to be an aggressive cancer that continues to spread and just last week the doctors gave my mom a very grim prognosis. We are not willing to give up on her though, and we know that God is much greater than any disease. He gives hope in even the most hopeless situations. I am asking for your prayers. God has already proven himself faithful even just through Ashlyn's life. He is able to do more than we can ask or imagine.

Lord, Our hearts are breaking. I feel such an oppression blanketing my heart like the gray clouds that keep hovering in the sky. You promise good things to those who hope in You. I can only hope for a miracle that you will heal my mom of the cancer that is aggressively taking over her body. I can't trust in doctors or medicine or alternative treatments or pink ribbons. The only thing worth trusting, worthy of hope is You. I'm so lost for answers but the one thing I do know is that Your faithfulness is great and Your compassion never fails. Show us new compassion in the morning or I will not be able to face the day.

At Home

Ashlyn was discharged yesterday and we are now settled at home. She is doing great with her new button, and we all love having her face back! She has her appetite back and is back on her normal feeding schedule and tolerating everything fairly well. The button still has a dressing around it, and I can take that off in a few days. It's still a little bit sore when I take the extension tubing on and off, so I'm trying not to do that too much. It should be mostly healed in two weeks, and we're hoping for no infections during the healing process.

Ashlyn hasn't been sleeping well the past two months, and I have been unable to figure out what is making her wake up. She is definitely not as congested at night like she was with the NG, and last night she only woke once. This morning I noticed a new tooth, so maybe it's related to teething. Now that we are home and settled, I have to take on the endless task of catching up on housework and laundry that's been left untouched the last few days, so if you happen to be at our house in the near future, you might not have a place to sit!

At CHOP

Ashlyn had her Mickey button put in yesterday morning. Everything went well, and there were no issues or complications with the surgery or the anesthesia. I didn't realize how painful she would be afterward. We use our bellies for everything...and every time she would cough, cry or move she would be in pain. She had a fairly restful night though and seems to be much more back to her old self today. She has a foley bag attached to the tube right now to relieve any pressure, but today it will get clamped off to see how she tolerates it. She should also be able to begin eating this afternoon and start receiving feeds through her new button tonight. Tomorrow morning Eric & I will go to class to learn how to use it and take care of it. If all goes well I'm hoping she will go home by Friday. Thanks to you all who have been keeping her in your prayers!

G Tube Surgery

The month of September was a challenge. In the beginning of the month Ashlyn had a double ear infection. Then she had a cold, got another tooth and had diarrhea for 2 weeks. All this had seemed to set her back with her eating and development (and our sleep!), but it seems she is eating better and even starting to drink from a cup better. She's also started using her little arms better to stabilize herself. Because of her reflux issues, she has a tendency to arch backwards. She gets occupational therapy once a week, and now we are trying to break that habit and teach her to lean forward instead.

Her echo with sedation had to be postponed because of the diarrhea, but this actually works out better. Her G tube surgery is set for October 20, and she will get her echo while under anesthesia for that. This way she doesn't have to get sedated twice. I'm a little nervous about the surgery, but it should be a relatively simply procedure with minimal blood loss and quick recovery...nothing like open heart surgery. She'll have it done at CHOP and be there about two days to make sure she can tolerate her feedings through the new G tube. It's going to be a while before she will actually take by mouth what she needs to really grow, and it will be much less frustrating for all of us.

Celebrating One Year

Ashlyn just turned a year old on the 16th. It's hard to believe. I can't explain how Ashlyn has changed us. Here's looking back on her life...

Make a Smilebox slideshow