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.

16 comments:

Anonymous said...

Do you remember that poem you posted? Well, I think you accidentally left out the last verse.

The last verse is about the person that God entrusted this special soul to - a beautiful woman known to this child only as "Mommy".

Just as Annabel is here to teach us how to look up instead of around, and to love blindly and faithfully without even the use of her words, you are the one God chose to care for his special baby. In your hands He placed the baby who has touched all our lives.

Whenever I think about all that is wrong with the world, I can look on these pages and witness true unconditional love. I can see God's Hand and a mother's fierce love, and what is more beautiful than that? No matter how you deflect praise Cathy, please know that out of all the world, God chose you for the hardest job of all, because you are strong, brave and LOVING.

So keep up the great work - with all of your children. I am humbled by these pages, and selfishly hope you find the inspiration to keep blogging with such intense honesty and courage. I am proud to call you friend.
Love,
Lisa

Hilary said...

Glad she gets better everyday!! Praying always for Annabel and your family :)

Janet said...

I am so glad to hear about her new wheels! I bet she feels like such a big girl! And hopefully it will make things a bit easier for you.
I can only imagine how you felt about the feeding. I will pray that it is only a temporary thing.
I know that the future or what may happen in the future is probably never far from your mind, and there is nothing I could say to put your mind at ease about that. Just take as much comfort as you can from the knowledge that our God knows your pain and your anxiety. And while you have the understanding and compassion of so many others who have been down this same road, no one can comfort you and give you strength as He can. Thankfully, He loves us even when we are questioning Him, even when we are angry or questioning His sovereignty.
I just think you are amazing to do all you do for her! You are so blessed to have her, but she is equally, if not more blessed to have you! The care and love you have given her, along with the mercy of our Father, are what has helped Annabel get this far.
When I think of you choosing Annabel, I get this mental image of her being on the edge of a cliff about to fall, and you just reaching out and grabbing her, pulling her to safety. Your story is so much more than a child with Trisomy 18 or that of an adoptive mom. You are extraordinary.
Remember the definition of courage~having fear, but being able to take action in spite of that fear~
Just like the first person who commented said, "a mother's FIERCE love"! What could be more beautiful than that??
Please tell Annabel that the entire 5th grade class at SOUTH CHOCTAW ACADEMY in Toxey, Alabama, as well as many,many others around here pray for her each day! Tehya is the Chaplin of her class and she doesn't let them forget!

The VW's said...

Annabel definitely touches people and teaches us the meaning of inspiration and grace! Thanks for sharing her with the world!

Gavin has been on Compleat Pediatric for about a year or so and it has been great for him! He used to have issues with constpation and gas and now he is very regular and RARELY gets gassy or distended. Like you said, it's like a meal in a can.....pretty cool, if you ask me!

It is very sad when your child can't eat "normally", but it makes me feel good that Gavin is at least "eating" similiar things that we do, except they are made into a liquid form.

Glad you got a new wheelchair for her that you and she likes! I can't wait to see pictures of it!

Love, Hugs and Prayers!!!

chadandnikki said...

Yay!! So glad she's improving.

Mrs Redboots (Annabel Smyth) said...

Cathy dear - it is about you, in so very many ways. God has called you to be Annabel's mother, for however long or short her life will be, and He never said it was going to be easy! So we need you to go on writing this blog so that we know how best to pray for you, as well as for her! You need our prayers every bit as much as Annabel does. You have mine!

Kathy said...

Dear friend,

You have given all of us so much as you love and cherish your precious Bella. You allow us to love her, care about and pray for her and your amazing family.
I cannot imagine not having Annabelgrace.blogpot to check nearly each and every day.

Always checking for a picture, news about your princess girl, or some fun family news. You are a part of my intimate circle of friends as I am sure you are to so many others as well.

Only blog when you feel up to it
(I would say when you have the time but we know your time is very precious and limited), but keep blogging. We are here for you and Annabel. You are such a cherished friend.

We don't always need "good news" or warm fuzzies from you, Cathy. We can take your darker days and concerns and let us hold you up in prayer. It builds our spiritual muscles and makes you lighter - can it get any better than that?!? ;)

So excited that you have spoken to your handsome soldier/son. You know my prayer is that you will hear from Tyler more than you ever hoped to hear his voice while he is away. Praying for safety, for stamina (long days, no days off as you stated) for friendship, and for God's protection.

How exciting that the VW's Gavin has such good results with the food formula that Annabel just started. Praying she will find similar results!

Hang in there, Cathy! You are loved!!! And since you asked, would love for prayers for our sweet Rose Bertha who lives in Haiti with her family. She has been our foster child since she was a little one and is nearly 12 year old (February 1st). Have not yet heard from Compassion International how she and her family have fared through this horrible earthquake. Please pray for all the people there and the relief efforts. Thank you!!!

Kenzie said...

So thankful for the updates and knowing that things are going okay. I know that you have to be exhausted and looking for a bit of respite now that Kourti is back. I tried to touch base on Monday to see if you were up for company but figured you were pretty busy. I love you guys and know this is an incredibly difficult journey... all I can say is that looking into her eyes, we all know that it is so worth it.
Praying,
Kenzie

connie said...

Hey, sweet friend. I am so tired this evening, and wasn't going to leave any comments, just check in on those blogs I love, and then I found this fun post. It made me happy, because you are so normal, and real. You know, when I write like this, Dr. B says she knows I am tired. :) Are you tired? (hah!) I also enjoyed reading the things others wrote - you are so absolutely lovable, and well-loved. Sometimes people just need to be reminded it, and I hope tonight you see that in the comments people leave. I agree with the comments about how amazing you are, Cathy. I have never known anyone like you before. You CHOSE to mother Annabel, and for that you will always be my hero.

I had wished so badly that Compleat would have worked for Mallorie. I guess the milk in it was the problem, because she had nonstopgreen watery diarrhea on it for the week we tried it, and her bottom was worse than ever. Good thing Annabel doesn't have any dairy intolerance. I hope it works for her!! Did you find out if insurance would cover it?

bluee19 said...

Please continue to blog even though I know it may be tiresome. I read your updates every time you post. I don't know that much about the history of Annabel but from what I have read, she is a very adorable little girl who is loved by so many people. I don't know where you get all your strength b/c I am tired of being a special needs mom. I keep hoping/praying Jesus would heal my little girl but I don't know if HE will ever heal her. Thank you for being the greatest mom to Annabel!! God Bless you, Nicole from CA.

therextras said...

Prayers continuing and looking forward to photos of the wc.

Barbara

Anonymous said...

I will not approve on it. I regard as nice post. Specially the designation attracted me to read the intact story.

Ashley said...

Cathy,

Your love for sweet Annabel is so beautiful. I know what it is to love a little miracle so deeply that there is nothing you would not do, give up, or try to make their day brighter, easier, or better. Each time I check on you girls I leave feeling encouraged and inspired. How blessed I am to "know" you and your sweet family through this blog.

I'm so, so sorry about the loss of "normal" where her eating is concerned. I truly do understand, but my hope is that it is temporary. So thankful she is more comfortable in her new chair. Ashley loves her new wheel chair and the difference in her comfort has been truly amazing.

What a blessing our little girls are. WE are truly, truly blessed. Thinking of you today. Trish

ParkerMama said...

I'm glad your beautiful little one is feeling better.

Take your time. We're all here for you.

Tammy and Parker
www.prayingforparker.com

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MONIQUE said...

I love reading your posts. As much as you and your family has been through and are going through, you all are a great inspiration to others. I love the closeness of your family and pray that all families could be like that but we know that they can't. That's why God has give you to the world. You have so much love to give, it makes up for some those who can't give it.

Love you,
Monique