Tuesday, September 15, 2009

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/ .

Sunday, September 13, 2009

Rhyder Anderson needs our prayers...

Michele and Dave Anderson

Rhyder and his family desperately need prayers. He is not quite 3 weeks old and has Trisomy 18. I was so fortunate to visit with his family this past Thursday and I was able to hold him. He is having central apnea spells very quickly tonight and he has pulled through a few other times. They want so badly more time with their lil man, Rhyder. They do not have a blog, but are on facebook. His parents are Dave and Michele Anderson. You can request their names on facebook and follow Rhyders journey.
I just found out that they have begun a blog for Rhyder.


Talked with Michele this morning. He was brought by ambulance to TCH and is now in NICU. They had begun to give him caffine at home for his central apnea but sometimes you have to adjust the levels. It is not the same for all. They admitted him and placed him on C-Pap to help with his breathing and try to get his caffine level adjusted. I know his family would treasure your prayers for this little bitty Angel.

Annabel meets sweet Rhyder...

Update: briannagiveshope.blogspot.com

It was so good to hear from Brenda yesterday. My thoughts were with them as they held Brianna's memorial service. I so wanted to be there, but just not possible. She sounded wonderful. I loved hearing how beautiful the service was and how they have been so lifted up by family and friends. They are truly God's faithful servants and know she is in a better place. Of course they miss her terribly and that will not end. But to be at such peace, what an amazing gift. Please contine to visit Brianna's site for a video that her and Jerry made for the memorial. Also, when they recieve the video of the actual service they will also share this with all of Brianna's followers. Please keep them in your prayers as there will be times that are low and times that are high.

Annabel Leigh, Trisomy 18, 4 1/2 mths.

I talked with Annabel Leigh's father on Thursday about his precious little girl Annabel Leigh. I love the name.They were struggling with decisions. They are on hospice and they were making decision to do more interventions. She was retracting and they were trying to decide about taking her to the hospital to rule out respiratory or other issues. This is their first child and want to give her every chance they can. I have not spoken to him again and not seen an update on her blog. If you would like to visit this little Angel who is so full of joy her address is: