Sunday, November 29, 2009
Tuesday, November 24, 2009
Sunday, November 22, 2009
We are back with our wonderful therapist from pre surgery and she gave me a lot of exercises to do with Elle to strengthen her mouth/lips. I hate being so dependent on the feeding tube and I wish that Elle would take a bottle - or breast feed - but she just doesn't seem to want to do either one. I know that it will be in God's perfect timing as to when or if she ever takes a bottle. She is a very perceptive little girl and she now associates the feeding tube with being fed. She knows that when the milk goes into the feeding tube - it's time for her to eat. We sign "eat" and "milk" and "hungry"to her before each feed and I think she is now starting to recognize those signs. Her face lights up when you sign "eat" to her. This isn't shocking if you have ever seen her chunky monkey legs...she's a little chunk!
Elle working on tummy time - she loves tags so we tempt her with tags to get her to lift up her head!
Tomorrow Elle will be 8 months old. It's quite fitting that Thanksgiving is only a few short days away because we have so much to be thankful for. Angie emailed me on Saturday to tell us that she was sending us a check for a huge sum of money from the Wee Dream Foundation. It couldn't come at a more perfect time because I found out on Thursday that my company is dropping health insurance. Elle is covered under my insurance. Thankfully, we can add her to Lee's and the coverage is just about the same. So it's really not that big of an ordeal - but with new insurance, comes more bills and more ways of figuring out the system. It was nice with our current plan because I had a case manager I could call at a moment's notice and ask her all sorts of questions. When you spend as much time in the hospital as we have - you get personal service from the insurance company! I am really not looking forward to having to re-fill out all the paperwork from all our doctor's with our new insurance information on it. Oh well - guess this mean I should probably aim to be a few minutes early to all our appointments!!
We have a busy week this week with a few appointments before Thanksgiving. Lee and I still are on the fence about what to do about Thanksgiving but we are leaning towards staying here and keeping Elle away from large groups of people. My family is huge and so is Lee's and it still makes us both so nervous to even think about her getting sick. I know all our family really wants to see her in person and not in a photo but right now, the risk is just too great. She gets her second set of flu and rsv shots at the beginning of December so after that, I think we will both feel a little more comfortable taking her to Christmas celebrations with the families. It is still mind boggling that it is already Thanksgiving!!
Wednesday, November 18, 2009
Monday, November 16, 2009 - we had the Wee Dream Classic Golf Tournament at Longwood Golf Club in Cypress, Texas. I dropped Elle off with Lee's mom and grandparents and then headed over to the tournament. I pulled into the parking lot and that is when the magnitude of the event hit me. There were cars everywhere! I walked to the back of the clubhouse to check in and it was absolutely swarming with people. Friends, family members, friends of friends...it was truly a sight to see! We had 152 golfers and actually had to turn people away because there wasn't enough room on the golf course for everyone! It was such a perfect day - the rain cleared out early in the day and by tee off time - the skies were perfectly blue. It was so nice to be outside - playing golf again. It took about 4 holes to get warmed back up - but I got the hang of it and thoroughly enjoyed the day. I think everyone thoroughly enjoyed the day! I played with my dad, one of his clients, and Lee. We just had a fantastic day - one I won't soon forget. After the tournament, we all gathered for dinner - plus around 60 more people. I still get teary eyed thinking about how full the dining room was with our friends, family and people that came out to support us. Sean and Angie did such a wonderful job. At one point in the evenings festivities, Sean called Lee and I up to the front and presented us with a check for $10,000.00. (I am bawling right now by the way). I lost it - a check for $10,000.00 - made out to us for our beautiful daughter...and they gave one to Mel and Austan for Witt too. And Sean said that was just a bit of the money they raised. I checked the Wee Dream blog this morning and we raised over $60,000.00 for Witt and Elle. I still can't believe it. Lee and I are both so overcome with emotions. I can't even begin to put into words how i feel right now - joyous, humbled, amazed, inspired, thankful, blessed - just to name a few. Thank you thank you thank you to everyone that has supported us through our most difficult times. The poem "Footprints" comes to mind right now and it was during our most difficult times that our most precious Father didn't walk beside us, he carried us. I just am stunned at the outpouring of support for our families. Thank you just doesn't seem adequate! It was such a successful night, not just because on Monday alone, we raised $23,000.00 but because of the fellowship - everyone coming together to celebrate the lives of two very special and amazing little kids. We brought Elle up for the dinner for about 15 minutes. Lee and I walked her around the room so everyone could see the precious little life that they have been praying for and they were celebrating on Monday night. This isn't the end of the line for the Wee Dream Foundation either. We are hoping to continue the foundation and generate support for the causes that are near and dear to our heart - Congenital Heart Disease and CHARGE Syndrome. Thank you a million times over to Sean and Angie who started this wonderful event and Cindy for the AMAZING silent auction and everyone else that made Monday night a spectacular event. Thank you so much!
Thursday, November 12, 2009
Tuesday, November 10, 2009
Waiting for her nurse Kathy - about to use the wall as a starting point for some major rolling across the table
Sunday, November 8, 2009
After Lee got home from the lease, I headed out to do some errands. I picked up a Jenny Jump Up while I was out. Jury is still out on if Elle likes it or not. She looks so tiny in it!