Three good days...

The last few days have been her best in a while. She has run a low grade fever almost daily since she was release from the hospital. Even though she now has a respiratory infection, I still consider the last few days her best. She has been able to stay on her formula feedings longer periods of time with less distention and retching. She has been sleeping better since Saturday night and I am so grateful.

Today was our GI appointment follow up to receive the results from all the testing when she was hospitalized. Since Annabel was placed on the TPN/Lipids she has gained 2 lbs. in one month. You can visibly see the weight coming on so quickly. They will adjust her TPN (20%sugar) and lower her Lipids (fat). It is too much weight to quick. So when the doctor walked in he looked at Annabel and we said the hellos, then he asked did you get the motility study when you were in the hospital. For all those that don't know this was the reason for the appointment. I could feel my face burning up. My sweet nurse said your faced turned so red. I have driven 2 hours to these appts. too many time for nothing. I was furious as I had called last Tuesday and was told the results would be in the GI's hands in 2 days. So 1 week later and he doesn't even know they have been done. Just plain crazy. Maybe with my age I just don't want to play their game any more. So with no results basically except for what we know about the dismotility we are to try to get her amounts up with feedings so we can decrease the TPN/Lipids. She has been on five mls. since the hospital. We did go up to 6 in the last 24 hours and will continue to try to go up 1 ml. per day. When she was in the hospital her liver functions were normal but the last two weeks have already begun to show an increase. TPN/Lipids can destroy your liver long term. This is something we are paying attention to since her liver has not been an issue. The GI dr. is suppose to get with the motility doctor who did all the testing and call us soon. I will try to get more pictures and write when I have clarification of what is really going on.

I do have a very sweet nurse named Rebekah that comes 3 days weekly. I am praying for at least one more, but her other families don't want to give her up. Friday night I will have a nurse that will come in 12hrs. during the night (3 nights) so that I can get my rest. I am trying my best to learn TPN and central line but I am quite nervous. But I do know I can do this, so hopefully by the weekend I will be doing this.

I am so sorry my writing is so boring and lacks any information. Annabel continues to be the joy of so many peoples lives. She has days she is incredibly tired but she still shine her sweet light and makes everyone smile.

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.