Saturday, November 28, 2009

Well we had a wonderful Thanksgiving spent with wonderful people! We had a house full and loved every minute of it. Craig and I picked up Fletcher at TCC and quickly brought him home. Boy was it great having him with us. We just feel complete when all of our children are together in our home. Craig's Aunt Susie came in from Houston for the holiday as well as her son, Stephen and his sweet family were here from Corpus Cristi. So great to see such lovely people. My sister Dawn and her husband Mike joined us for a quick visit too. Craig's parents Trudie and David along with Craig's sister, Kristi and her family were here too. Fletcher was in rare form that day and we were so thankful for that.

Man of the hour...
Amanda, Stephen
Amelia and Max

All the Burns grandchildren

Rodney, Fletcher and Kristi

Fletcher and Aunt Susie

Three generations of Burns'

Me, Fletcher and Craig

The loves of my life...
Kayleigh, Fletcher and Maddie

Today we decorated our Christmas tree which is always fun! We've hung our stockings and tomorrow Craig and Kayleigh will put up the outside lights. I'm hoping to start my shopping next week. I just need to get a list made so I can start checking it twice! A lot to do around here!

Thursday, November 26, 2009

Happy Thanksgivng...

Hoping today is truly a day of thanksgiving for you and yours! It is for us. Today we will bring Fletcher home for the day. It's been a battle the last few weeks with TCC. Some things are changing up there and we're not very happy with the changes. TCC has decided that they don't want any of their equipment to leave the building for home visits. So now the equipment, ie ventilators, concentrators, O2, suction, feeding pumps, etc have to be rented by a medical supply company. Not very family friendly if you ask us. Not really understanding the reasons they're giving us either. Our hands are tied in this situation and we don't like it at all. So we've basically been battling with these people and it's made for a stressful time at our house. I will say the Lord is in control and He gave us favor in one area in particular when it came to Fletcher's ventilator. They were trying to send him home on an older model ventilator! Okay an older model feeding pump, sure. An older model suction machine, no problem. But the very source of his life support? No way!! But like I said, the Lord let TCC find favor with us and we are at least bringing Fletcher home on his vent. Thank you Jesus! I could go on and on with some of the things happening up there but I will not.

Instead I'll focus on what I'm thankful for...I'm so thankful for my relationship with Jesus and that He loves me just the way I am otherwise I'd be in poor shape! I'm thankful for Craig and the way he loves and cares for me and our children. I'm thankful for my Kayleigh, my Maddie and my Fletcher what a source of joy they are to me. I'm privileged to be their mother and Craig's wife. I'm thankful for my mom and the way she taught through example of how to make a home and care for children. I'm thankful for my fun it was to grow up with all of you. How fun it is be grown up with you and laugh and cry together and always know we have each other no matter what. I'm thankful for my in-laws and Kayleigh's grandparents. I really don't know what we'd do without their help and their wisdom and their guidance as we navigate parenting. I'm thankful Craig's sister and her family they're truly a blessing to us as well and lots of fun to be with! I'm thankful for my friends. I wish I could list you one by one but I am blessed with too many to for that. Just know you all are loved and appreciated! I'm thankful for my little grey house and the love and laughter that fill it's walls. I'm thankful for our cars. We just paid one of them off! I'm thankful for TCC even though it's not perfect it is serving it's purpose. There are truly so many things I'm thankful for these are just a few. I pray your Thanksgiving is filled with love, laughter and lots of good food and conversations today!

Monday, November 9, 2009

Look what the Lord can do...

Today Fletcher started the journey of using a gait trainer! He wasn't real jazzed about it at first I think just because after class he and I usually go on a walk around the building. Instead today after class we did gait training. Fletcher had a whole load of women that were behind me cheering him on! It was a great morning and I'm so looking forward to what the Lord has in store for this little guy!

Thursday, November 5, 2009

Surgery update...

Fletcher's surgery went very well this morning. We left TCC at 5:45 and returned around 11:00 this morning. It was a very simple procedure since they just took out the port and didn't replace it. Fletcher bounced back quite well. He took a nice nap this afternoon while I was taking Maddie to see an endocrinologist and then to the dentist where we found that she has 4 cavaties. It's been a very busy day and we're all tired. Thanks for your prayers!

waiting to go to the OR...

Tuesday, November 3, 2009

Surgery for Fletcher...

Fletcher is still having problems with his port. The skin has not gown back over it and they have to keep a special dressing on it. And the dressing really bothers him and he just scratches at it anytime he can get his grubby little hands on it. We have come to the decision to remove Fletcher's port and NOT replace it. He's been doing so well lately and the last time he had Pamidronate they used a peripheral line and he did great. So there is really no need to have immediate access to a line. And it will give his little chest more time to recover from all the lines he's had over the last four years. The port that he has now is in his leg and it's been a pain in the behind since the day he got it. So, Thursday morning we'll go to Children's Hospital and Dr. Tuggle will remove that nasty ol' port. It's kind of a relief to think about one less thing to worry about with our boy. We'd appreciate your prayers. I'll keep you posted. Thanks!