GI appointment

It is official Lillyann will need stitches. It is actually more like a surgery as what they told me...

This is like the picture they drew us. The circle is Lilly's stomach and the curved line is her skin. They will disconnect the tube from the stomach and the skin and then put stitches in each. They are more worried about the stitches going on her stomach because if the stitches do not hold, it can be very bad. We will be first case on April 13th and will remain in Marshfield for at least three days.
I am confident that this is what we need to do to ease the pain and restless nights. I will let you know how everything goes and please think of Lilly on the 13th!

Birthday Pics!

Let me thank all of the family and friends who came to our house. It was definitely crazy but a lot of fun too! Lilly and Dylan both walked away having a great time with friends and family and a wonderful night sleep! Paul set up the Barbecue in the garage and we grilled (even though it was 20 degrees outside), while the inside of the garage still smells like grill two weeks later.

It is amazing to look back on all of the wonderful things happened this year. Dylan is now able to be outside and I don't need to worry to much about him, besides getting his bike stuck in the mud. He actually helps out around the house and fixes whatever needs to be fixed with Paul. We finally got our letter and Dylan will be starting 4K in Bloomer this fall. Paul and I got him a Leapster 2 for his birthday and I can already tell the difference! He can now write his name, recognizes some numbers and letters and can add. He is ready and excited!

On April 1st 2009 Lillyann went in for her first open heart surgery. We spent that day huddled around playing cards in the waiting room.....waiting to hear about our little girl. Now two years later I can look back and not cry about the struggles she has faced, but the triumphs she as overcome and excelled in. Mostly she has beat every 24 month test they can throw at her. Even her speech is at a 30 month level (putting two or more words together) and her signs have reached at least 40. Thank you Signing Time!

I promised to put some pictures up, sorry it has taken so long! We go in to have a consult with the GI surgeon tomorrow in Marshfield. I am a little nervous but we will keep an open mind!

Opening of a new window....I hope

Lilly's doctors appointment went good with Dr. Jermey. She is in the 25% for her height and the lower 3% for her weight (17.98 pounds). She is now done with her shots (besides flu) until school! This will make her very happy and hopefully enjoy going to the doctors again. Jermey does not think that it is wise to break her of the bottle just yet as all we can get her to eat is rice and noodles. He told me that he would rather see a few cavities then having to put the G-tube in again. She was also placed back on Prevacid temporarily to help with the discomfort along with a topical cream to keep out infections. I hope that it will work!

My fight with the insurance company failed twice. They will not pay for the 1.5 cal Pediasure now that she is off the G-tube. I, along with both Dr. Jermey and Dr. Julie Dietz have pleaded with them but it was unsuccessful. I now worry that as our stock dwindles, so will her weight. As long as she is not loosing we will be able to keep her from having the G-tube again.

Because Lilly's G-tube site is still leaking, I was able to speak with a adult GI surgeon in the Chippewa Falls area that may be able to at least do a consult and save a trip to Marshfield. I will know more this week if he is willing to do it or not. Dr. Jermey thinks that if we fight hard enough we may be able to get a anesthesiologist that is qualified to sedate Lilly if Dr. McDougall is willing to do the stitches too. I know it is a shot in the dark to ask this of a adult surgeon because Lilly is still a high risk patient.

The kids' birthday party was great! They got tons of things from the family and I think had more fun just having everyone here. I will post pictures soon. Thanks for checking in and please say a prayer for our friend 4 year old Carla Wright, she was placed onto the donor list for a heart today. Pray for a heart and the strength in herself and her family to make it through this continued HLHS fight for life.

Fighting with Doctors are GREAT!! NOT....

Lilly has had her G-tube out for 4 weeks now. They told me that it should be fully healed by now, however, it is not. Called and they want me to drive to Marshfield twice just to see if they WANT to put stitches in. NO not gonna happen! Talkin' with her pediatrician on Friday for her 24 month check up to see if we have other options.
It seemed like because Dr. Fish did not want to have the tube removed, now he doesn't really care. Yeah, he can take his job and shove it!

I will let you know how the appointment goes on Friday.