Vesicostomy....

if you know anything or anybody who has experience with this could you please let me know...That is what sweet Annabel needs. She can't seem to stay well and is staying almost infected the entire time now. She has lost a pound in the last week and not wanting to eat. Nights are long as she is not comfortable. There is also possibly something going on around her surgery site that is causing much distention and she is in pain from this. She doesn't cry out with noise but today she just lay there on her quilt with tears rolling out the sides of her eyes.

A blessed mom...

I am sure in my earlier life if someone would have asked me if I would think I was blessed by having a special needs child, it would have been "NO!" I know that I have been blessed five times over with my wonderful children. That I do know! I have said many times over that Annabel has blessed my life in ways I couldn't have imagined. Anyone who is raising or has raised a special needs child will know that the day to day can be very hard. I count my blessings everyday that Annabel has a place to go. Her school is a wonderful, happy and safe environment that she is able to spend her day getting therapy, learning and BEING SO LOVED! Her teacher Ms. Ann, and the two aides Ms. Lisa and Ms. Alice are the most amazing people I know. Each and every day they do this over and over again. These people deserve a major recognition for their dedication to these children. Regina Howell Elementary School is this amazing safe haven that Annabel gets to retreat to each day and interact with children and adults of all ages. This year our school has been demolished to make room for a brand new school. Until the remodeling is complete, we are being housed in portable buildings. I have to say I was not looking forward to this school year because of the inconvience with a little farther drive, portable buildings, outside walkways, etc. I couldn't have been more wrong! They have taken and made this new site a very welcoming and safe area for our children. There is a very sweet lady in charge, Mrs. Rose Hardy the principal, who welcomes all with her gentle smile. She runs a tight ship and takes care of business. She has always made me feel like Annabel is the only child on campus, what mother wouldn't like this! It is wonderful to know that Annabel has visitors throughout the week that brighten up her day as well. I hear great stories when I pick Annabel up about her laughing and clapping when Mrs. Hardy sees her in the hall or how others have come to rock her on their breaks.

There is a program here called Parental Partners Awards Program where 27 principals nominate a parent from each of their schools to be honored. I was blessed to be one of the 27 parents honored today. What I really want to say is that IT IS MY HONOR to have been blessed to be Annabel's mother, and to have been lucky enough for my child to attend this wonderful school with the sweet teacher to love on my child each and every day. When Annabel was about to turn three and no longer be able to receive therapy from ECI, I was terrified of what to do next. After asking around for weeks to make the best choice possible for Annabel's next step, Regina Howell was the answer. Everyone explained how caring Mrs. Hardy and her staff were and so I went to visit. Ms. Ann eased my troubles and fell in love with Annabel at first site. From then on I knew that this was the best school for Annabel to attend. I appreciate all the hard work and effort that everyone puts in each day to help Annabel learn and grow into the person that she is today!!

Longing for boring again..

Well my Tyler has left with his unit. He is still in Texas but he can't come home anymore. I can call him and talk with him so I am not experiencing those far away feeling like when he will be in Iraq. My mother cooked his favorite rice and gravy with all the fixings. We enjoyed being together. We then went to the Astros game and watched our soldier walk out of the field prior to the game for our National Anthem. Wow, was that emotional! I think I maybe a wreck for a while now. Yesterday morning when I brought Annabel to school they played the National Anthem and I was crying again. What is up with that????

Annabel's Aunt Lira (my sister) and her boyfriend Robert took her to see Playhouse Live. I can't download the pictures yet so they will follow. Aunt Lira said she had a great time and paid very good attention to all the bright colors and activity. We are so thankful that they take up this fun activity so mommy doesn't have to.

Last night, Derek, my oldest celebrated his 28th birthday. We had a great time with family and friends. They food was great and especially the desserts. We need to thank meemaw for a wonderful chocolate cake, buttermilk pie and chocolate pie with fresh whipping cream. Yes, I did have a sampler platter of desserts. We are so thankful that Linzy's family came over and shared in his birthday with us.

Annabel did have her ECHOcardiogram and 24 hr. halter monitor this past Thursday and Friday. I have not yet recieved the results from these but do expect them in the next couple days. The reality is that things are changing with Annabel concerning her heart and her lungs. The new words are pulmonary hypertension, fatal disease, cardiac cath, medication (not a candidate), lung transplant (not a candidate of that either). All in all Annabel is doing good. Her troubles come during the night when she forgets to breathe due to a few factors. Hopefully, in the next couple weeks we will have some concrete answers.

The goods news is that she is gaining weight. Back in April (prior to sleep study) she was at her top weight 24 lbs. As of this past Thursday, she weighed 24 lbs. even again. She is eating the same amount of baby food as she was back them. We are so thankful to Michele (her milk mommy) for her continued pumping and their hospitality in letting me stay in their home while in Houston. Also, Rhyder's mom has been giving us some of the newborn milk that since Rhyder is taking such small amounts. Her is that early breastmilk with all that good stuff in it. These are temporary but we are also getting milk from the milkbank. I truly believe this has helped Annabel get back to her highest weight ever and also help with her gut healing.

We were not able to go see the Botts and attend Brianna's memorial. That was such a tough decision but we can no longer pick up and travel with Annabel needing oxygen to sleep. I was able to talk to Brenda again and she is having a tough time. I truly can't imagine how a mother's arms feel after lossing their child. Please continue to visit http://www.briannagiveshope.blogspot.com/

as to they will be adding video of her precious life and maybe add her some uplifting comments.

As far as Rhyder goes, he is at TCH, they are giving him caffine and I believe this has made a great difference in his breathing. Connie, Mallories mom, has been a wonderful source of information to Dave and Michele, Rhyder's parents, and for this I am thankful.

Annabel Leigh is home from the hospital and they are treating her for a respiratory infection. They are helping relieve her stuffy nose. This is their first child. I can say I can't imagine being a first time parent and experiencing all the unknowns of this trisomy 18 journey. Her blog address is http://www.sweet-annabel-leigh.blogspot.com/ .