Saturday, January 16, 2010

Sitting pretty...







This is Annabel's new wheelchair. Yes, it does look like a wheelchair but it is so important for her to be comfortable and be able to interact with others. The very first day we brought it home I placed her in the chair and wheeled her to the kitchen while I cooked supper. I was stirring something on the stove and heard this cabinet open and close. She had reached for a drawer knob and was pulling it in and out. Then she took her hand and rubbed it on the granite counter top feeling the smoothness or the coolness. It also has the pole so we can attach her pump and feeding bag along with her oxygen tanks if need be. When we travel to the doctors appointments in Houston it is hard to push her and pull the oxygen tanks also.
I have not mentioned the earthquake and these little innocent children and their families probably because I am so sickened by these circumstances. I know that we are all praying for the help to become organized and as many lives that can be touched and saved to be helped. Praying for all of our soldier that are serving anywhere and making such a difference for so many.




Friday, January 15, 2010

A quick note...


Please forgive that fact that the photos are sideways. I am going to have to figure out how to change them. I do know how to rotate them but these appear to be at the right angle on preview. Oh, well! Just wanted to say thank for all the nice comments! Also, quickly wanting to say that Annabel is doing well. Better than we have seen in a long time.
Maybe this weekend I can get some better pictures, but I was amazed today at how long she is getting.

Wednesday, January 13, 2010

Help, I am drowning and I can't get up....

No, not really but maybe I have just felt like this for the last two days. We weren't even gone that long but much to do upon return.

WARNING: This will be all over the place, I will not proof it and if you have any questions just let me know if it doesn't make sense.

Biggest news is Annabel seems to be recovering quickly from her surgery. Yes, she is still so tender to be moved anywhere. So we have two main places beside her bed where she sleeps at night. She is comfortable in her beanbag and she received her new wheelchair on Monday morning while in Houston at the hospital. Yes, if everyone remember she received one last year that was fairly flashy, lots of pink. At the time, when we were planning for her wheelchair they (therapist) thought she needed the ability to self-propel. Actually, I wanted both, one that was able to tilt-in-space and one that she would eventually be able to do if she was able. But the wheelchairs will not do both. Well, Annabel's status has changed and maybe due to the tethered cord but she was curving right out of her wheelchair and just couldn't sit up straight. She sits beautifully in this one and she is at such a good level in her new one. It also can transport her oxygen neatly secured to the wheelchair and it has a pole that her pump and feeding bag attaches to. I need to try to take a picture with her sitting in it. She has been so comfortable since the first time we placed her in it Monday.
Back to Annabel, she is having lots of GI issues that began on Saturday while in the hospital. They thought she had a perforated bowel (reason for NPO Sunday night and all the surgeons who decided to visit Sunday night late through Monday early morning) but thank you Jesus, not a perforated bowel. She is having spells of becoming very distended and not being able to release any air(gas) on her own. So with a fairly good size tubing (20fr. catheter) we are having to vent her several times daily. The GI consult that came by thinks Annabel cannot break down all the sugars, probably more to this explanation, but I was totally stressed when he said no more foods orally, only by G-tube. It broke my heart that one of our last normal functions, i.e. eating was for now not going to happen any longer. You see with Annabel in the past when we cease to do something she gives it up all together. It is just too easy for her. But of course, I want her to do what is best for her entire body, no just me, wanting this normal part of what she can do! Yes, I do know this is not about me, totally about this Angel and what it takes to get her to thrive.
Upon release, they didn't want her taking Pediasure, breast milk or eating her baby foods any longer. So I was fairly stressed out about getting my hands on what was prescribe called Compleat Pediatric. I spent an entire day going to different home health, Wal-mart and Walgreen's(since Internet said they carried, they don't) and calling anyone who might know how I could get some. My hometown pharmacy (KINGS Pharmacy) who compounds, delivers and answers my gazillion questions solved my problem. I requested late yesterday evening and they had it this morning. So we began Annabel's new feeding. From what I understand, doing absolutely no research, because at this point I am trusty my doctors, it all made sense! This formula is veggies, meat, fruit (i think) all blended up into a formula. If any of you have tried or know someone who has tried this formula, please drop me a line and share your experience. I do have a blenderized diet cookbook for tube feeds but honestly, I don't cook much for my family as it is! Wish I did, but the fact is I just don't.

Besides, going to the neurosurgeon for follow-up (at this point too early to tell if it was successful or to what degree and what it could have affected)in two weeks, she will be seeing a GI doctor to find this source of air that is making her very uncomfortable and also seeing the general surgeon about what possibly will happen concerning this. If the tethered cord surgery wasn't successful concerning her urinary issues, Bella will be facing a possible Mitranoff (sp) where we would cath her from the opening in her belly (not the vesicostomy) that was once mentioned. But one thing at a time.
My family is doing good. I talked to my soldier boy yesterday and he sounds like he is doing well. Working 12hrs. days 7 days a week but I was so thankful for the call. Derek and Linzy(sweet girlfriend) are doing great and will be posting more pictures very soon. I have new camera and so much trouble loading and locating them to put on blog. Tara spent the time at the hospital with me and I enjoyed us having time together again. So much help for me and just fun hanging out. Carly and Colette had a sporting event at school for the weekend but were able to come up with their dad to pick Tara up and visit Annabel. I am blessed that my family allow me all the time needed to take care of Annabel with continuous offers to run errand, come and bring me whatever I demand (I so can be that way)! Kourtni returned on Monday from her long winter's nap (oh,not really just extended vacation with her family back home in Utah). It is so good with all my errand running to catch up having her right here in the house to help me. Annabel didn't skip a beat in remembering who Kourtni is!

I do feel this blog is one-sided in the fact that I don't inquire much about all of your families like I should. Sometimes, I truly think maybe the blog is one thing I can't do any longer. But then someone shares personally with me how Annabel has touched their lives and I think, just keep on doing when I can. Then there are all Annabel's prayer warriors that I feel like I've know as long as she has been in my life. With just your words you life me and give me the strength to keep on, so this I will! I never want to close without a "thank you." How I would love to say that I contact each and everyone of you but I would be lying, but I want to. So I will keep trying. Please, I love to hear anything you share. This journey is crazy and something that may work for you or your child maybe something that will help Annabel to make her 5th (of my gosh), 6th etc. birthday. Talk about taking a village to raise a child, yes mam that is what ya'll are, "our village." I welcome and am so grateful for the help. Let me close by saying, I love this girl beyond word, but for this Trisomy 18 illness, I detest it.

Monday, January 11, 2010

A blur...

Today was an absolute blur...the good news is that we are HOME! I have much to do and will try to update later or early in the morning. As I was driving home this evening I remembered I never posted anything today on the blog. As faithful as you all are, I just zoned out today. Will try to settle and come back if not in the morning. Thanking you for your continued prayers...

Sunday, January 10, 2010

Snuggles, clean gown and movie watching...

UPDATE: So much for no news is good news!! The gerneral surgery just left and said that they see air leaking out in her belly. To be honest I can't quote you exactly what they said except for it shouldn't be there. I told them a little about her history like always have so much air and they are going to do more xrays tonight. They both remembered her from when she was here so sick in April with her bowels issues. They also said that I would be seeing the surgeon who actually did Annabel's bowel resection back in June. He was such a nice doctor who never even questioned the fact that she was Trisomy 18. This is it I am going snuggle until xrays and then return for more...

Update #2: She is now NPO, I think this is just in case and i feel sure after the xrays we will be able to have our feeding. This came from the 3rd general surgeon that just left. My opinion is she is feeling better than last night so hard to believe anything is wrong.


Look who is here!!!
This is my sissy, Colette...

Am I seeing double, oh no this is Carly...


Fresh, clean and comfy...


This will be short so I can hold her again. She is still very sore but that is to be expected after laying flat since Friday morning. Then I asked for a big girls bed so I can lay and watch movies or TV with her. Still no reports from lab or xrays, I am assuming no news is good news. She tolerated the morphine better today and slept almost the entire day. Mel brought Carly and Colette to the hospital and they brought Tara back home as she needs to return to work. Carly and Colette actually got a smile from her today when she woke and saw them by her bed. Still praying all goes well and we can be discharged tomorrow as was originally planned. I will update tomorrow and thanks so much!

Surgeon just left...

He just didn't seem as concerned as the doctor this morning. He said she is reactive to the touch, which is good and also the incision is dry, which means no leaking of spinal fluids. Yeah....
He is the one who calls the shots and says that we can try tol hold her at 3:00 so yes I will be snuggling at 3:01. Hopefully will try to take a picture of her, not me of course! My last post sounded way too negative, (I actually reread quickly) so I am glad the surgeon came by to give his take. She will still need the xrays on her chest and tummy. Most everyone that sees her xrays think something is up. I told him that maybe they could look at her past xrays because she just has very loopy, stretched out bowel loops that fill easily with way too much air that she can't release.

The following is a poem, author unknown that I read on this blog: amazingsydneygrace.blogspot.com Please if you have time drop over to see this precious little one who is 3 days old with Trisomy 18. She is doing as well as can be expected but is in need of our prayers.


Once upon a special day in Heaven up above , The tiniest souls sat at God's feet, surrounded by his love. The time was coming, very soon, God said, do not be scared. Your family awaits your arrival, now let us get prepared. And so God looked upon these souls, in mute consideration. He knew the life each one would live, He weighed each situation.

The souls chatted amongst themselves, and wondered who they'd be. They knew the day grew closer; soon, they'd meet their family. How would you like to change the world? God asked each soul in fun. The chance to change a soul, a heart, is held by only one. I'm going to make the world laugh, one soul said with a smile, for laughter heals a broken heart, and helps us through each trial. Then take with you the brightest smile, and share your laughter well. The soul thanked God immensely, and down to earth he fell.

And I'll remind the world to sing, a sweet little soul told the Lord. I have the gift of a beautiful voice; I can hit every note and every chord. You’ll have the gift of music then, a voice, lovely and strong. Share your gift with others, and let them hear your song.

I will show compassion, the next little soul raised her hand. Some people only need a friend, someone to understand. Compassion is a good thing, God said with much delight. To you, I will give mercy. You'll perceive wrong from right. And so each soul shared every thought, their plans, their hopes, their dreams. And God explained that life, it is, much harder than it seems. And as each soul began to leave in a scurry of laughter and fun.

Heaven became quiet and still, for left was only one. Come sit with me my little child, God said with just a sigh. Do you know how many you will touch, in a world left wondering why? Before your life comes to an end, you will know much strife, but you'll teach those who know you, to cherish the smallest things in life. And some may only know you through a simple photograph, they'll never hold you in their arms, or memorize your laugh. Some may only know you through the words they read each day, but you'll do something wonderful, you'll make them stop and pray. The tiniest soul raised her head up, to touch God's firm, strong hand. Father, I am ready for, the life that you have planned. And I will do the best I can without a word or deed. For you Lord, are the planter, and I will be your seed. She could already hear many praying, and although they had not seen her face, they were praying for her safe arrival, they were asking for mercy and grace. What talent do I leave with Lord? What gift do you impart? All that you will need, God said, I've placed within your heart. And so God kissed this tiny child, knowing all that she would be, and whispered as he watched her go...You'll teach them . . . to love me.

- Author Unknown

Prayers, please...

Please keep praying!! Her little body is hurting all over. When the doctor came in this morning he agree there is too much pain since last night. He actually rolled her a bit to look at her back and she screamed and cried for a while. If anyone knows Annabel, it is so hard for her to cry out loud. Ok, yes it did break my heart! Last night after the doctor came by it was agreed it looked like she needed help to go to the bathroom and ordered medication for her tummy and said no more morphine since this slow her GI system. Well within about 2 hours she was much relieved for a couple more hours. She rested in a light sleep til early this morning. She is probably in more pain now from what we can tell than before. He ordered the morphine right away. She is still in pain at this time but we can't touch her. They said at the earliest tonight if we can hold her. They did labs and an abdominal x-ray. Neuro came back and said radiologist saw something on the x-ray so she needs to go down for a chest and more abdominal x-rays. He also said she could have more inflammation that necessary around her spine and maybe this could be the cause of the pain. I am still not giving up on holding her today. She needs it and so does her mommy. Yes, I do realize this isn't just about me! Also hoping that she will feel like a picture tonight! Thank you for your thoughts and prayers....