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Tuesday, February 3, 2009

Just how it is....


I guess the picture summarizes our last week or so. We have had some tummy troubles and some testing. Annabel's gut continues to be full of air and she was seeming to be in intense pain especially in the evening. It was talked about her having some sort of obstruction, but that was ruled out after almost 11 hours of continuous testing. She seems to have incredibly slow motility. The next day was spent in Houston having shoulder x-rays which her PMR dr. suspected dislocation from previous x-rays. After 3 different sets trying to get them just right they just ruled that it is consistent with a neromuscular disorder (basically low/weak muscle tone affects the alignment). I never felt she had a dislocation but I hated to just ignore what they were saying. After these appt. made it to GI dr. We are going to try to readjust her laxative and how we are giving it but his recommendation is a fundiplication(sp.?). I would have to be convinced to have this procedure as to the fact that she has never showed any reflux after numerous testing to rule this out. So I have been a little exhausted with her not attending school and just the stress of being up several nights listening to her scream in pain. At this point she is moving things through by adding Milk of Magnesia every 4-6 hours with tons of water. She has made two days of school and that provides me with a huge rest. We assume the flu is visiting our home with Mel and Colette (one of the twins) being affected. Trying to juggle sick rooms from well rooms so Annabel hopefully will not come down with this. It is bringing very high fever, severe headache and aching all over. This would scare me if Annabel would get this. She did come down with cold/runny nose again this weekend but no fever and she is sleeping at night, YIPPEE!
As you can tell from the picture we have had many P.J. days!

Friday, January 23, 2009

Sweet visit...







This weekend we came to McKinney for a soccer tourney for my twin daughters. I remember that sweet Mary Grace Summons family lived somewhere near here so I sent an email to see if we could meet. Kim is such a sweet lady with three beautiful daughters. Mary Grace who is listed on the sidebar of Annabel's blog was born a year ago with Trisomy 18 and has gone home to be with Jesus. She is such a beautiful little girl and touch many lives in her short time on this earth. She has two of the sweetest big sisters. They are so precious and were so sweet to Annabel during our visit today. Kim, it shows what an awesome mommy you are through these two girls. They were so patient as we visited and they took part in the conversations and kept Annabel entertained with hugs, singing songs and playing hand games with her. She was not her usual happy self, I think just out of sorts with the traveling thing. Allison and Kailey brought her a webkins pink platypus and she is snuggled up with it tonight in her crib. Kailey said the sweet thing when she arrived about how she had told her friends at school that she was going to get to go see Annabel Grace today! As you can tell from these picture that love just oozes from these beauties! Thank you Kim, for making our day today. You drove much farther than I did just so Annabel and I could meet your family. Praying for your safe and peaceful delivery!

Saturday, January 17, 2009

Three of God's miracles...

I continue to be amazed at the blessings that are allowed me through Annabel. I just wanted to post a little tonight and I will follow up with more pictures at a later date. A couple weeks ago I was contacted by Brianna Botts family who lives in Florida. Brianna is 21 months old, has gorgeous blue eyes and Trisomy 18. I have been following her on her CaringBridge site and on occasion Brenda and I email each other. They were coming to Texas this coming week and were willing to come in early to meet Annabel. Annabel had to be in Houston for a drs. appt. and so they flew in early on Friday so we could spend sometime together. We stayed at the same hotel and were able to spend some great relaxing time just hanging out and watching our girls. Brianna has a beautiful family who loves her very much and take unbelievable care with her. Just in the short time we were together I learned so much. There was also a family who lives in Houston with a nine month old little girl, named Rachel. She also has Trisomy 18 and I have been in contact with her mom, Sarah. She was able to come to the hotel and meet with us Friday evening. She couldn't meet up with us on Saturday and we were all sorry for this. As most of you know, Trisomy 18 is so rare that it was just amazing and an incredible blessing to be sitting in this hotel with these 3 precious little girls. The conversation flowed so freely as we just shared so much information about our little girls. There are so many similarities but there are also many differences. Rachel who is only 9 mths. was already sitting up alone. Brianna who is 21 mths. old would roll over, get up on all fours, very close to crawling. Annabel always has seemed so small to me when compared to other children. She looked big for the first time to me last night! I will add just a couple of my very armature photos but will follow up with Brianna's mom who took many more pictures with a much better camera. I am so thanking God from the support that He allows to bless us through these families of these wonderful miracle babies.
ANNABEL AWAITING THE ARRIVAL OF HER NEW FRIENDS!!!



THREE AMAZING MIRACLES!!!!

EXHAUSTED, as she sleeps with one eye open!