NO quite sure what is going on....

Annabel was sick almost two weeks ago with high fever, cough and much congestion. She has lots of loose stools.  She was placed on Zithromax and they fever subsided along with the loose diapers. But her cough and congestion continued so she was placed on mucomyst, changed from albuterol to xopenex. Her mucous is still very sticky, almost like glue... She has it coming out in her stools, up through her mouth with the gagging/coughing and out of her g-button. She has an excessive amount of gas. Her tummy has begun to distend. There are some questions to maybe it could be her formula (ElaCare). She has trouble with most all of the disacarides. Last time we talked with GI prior to her surgery, we were told ElaCare is basically the end of the road, that Annabel had tried most everything, including the RCF that was carb-free.
We are going to give her a little more time but she seems tired and mostly disinterested in all the things that made her the happiest.
She is still getting the 1200 mls. of Ela Care except when she was the sickest a couple weeks ago which we had to switch to pedialyte.
Wish I had something more inspiring to write but it is hard to see her not feel well and not know how to help her. We had to cut back on the swimming till she felt better. Hoping we get to swim before it get too cool.
   

Needing to be Chloe like....



This is the first time Annabel met her cousin Chloe



This is the 2nd time she has seen Chloe



I have been thinking about the times Annabel has met her sweet cousin Chloe. She is actually my first cousin Terri's daughter.  Chloe is 6 years old.  So I guess that would make her Annabel's 3rd cousin. But in my crazy Cajun family our cousins were like our best friends.  Before pre-schools, play groups and daycares our mom would get together and us kids would play and spend time at each other homes. Also my grandparents lived locally so it was nothing for my grandparents to have us all over together and we could play for hours with each other. 

Chloe's parents are a good church going family and aren't afraid to share their faith. A couple of months ago Chloe asked her mother about Annabel. She said momma "when am I going to get to meet my cousin Annabel who I always pray for?"  So Terri text me and told me what Chloe had said and asked could they come see Annabel one weekend for a visit. We arranged to meet on a Sunday afternoon at our home. Chloe walked into our home and it was like she had always know Annabel. She wasn't scared of any of the tubes coming out of Annabel's body. With the sweetest child like attitude she just picked up some toys and began immediately interacting with Annabel. This went on for a few hours. She asked very sweet, innocent questions about Annabel and about her limitations. But she never stopped treating her like a "normal child." She threw balls to her, she would bring toys over, sing to her and just play!

This was our first meeting....

This past weekend another of my cousins had a baby shower at my moms house. I knew it would be crowded, lots of people and maybe germs, and my excuse was there really wasn't room for her wheelchair....

My sister called and reminded me that people wanted to see her who prayed for her in the past but didn't get many opportunities to see her. After an evening of thinking I decided that my sister was right and that I would load her up for the trip to grandmas for the shower.

After about 30 minutes of arriving, Annabel was sitting on the couch and being entertained by adults. She was happy as she always is....

Then the doorbell rang and the next thing I heard was a child like voice spotting Annabel when she walked into the room. She said "Momma Annabel IS here!!!" She played and entertained Annabel the entire time. She clapped over and over and made Annabel smile from ear to ear. I was happy I brought Annabel so other family members could see but what struck me most was how Chloe views Annabel....

You see Chloe doesn't see Annabel as handicapped, sickly, a child of a different race. Chloe truly doesn't see Annabel as any different from herself. Yes, maybe she prays a little more for Annabel than others because she needs more prayer.

My thoughts lately have been that I wish I was more Chloe like....My prayers is that we would all see each other like Chloe does. Really, no different from each other, that we are all created by God no matter our race and that some of us do need more prayers than others.

Kuddos to Terri and Ken her parents. You are doing great things with Chloe and she is teaching an old dog like me, new things!   

   

Small bowel surgery....

 This post is in reference to Annabel surgery in July. I have struggled to post these pictures but if you are a parent to a special child then these probably won't bother you.

Annabel went into the hospital for an ileostomy on July 17th. Annabel's surgeon felt that if she was to ever have a chance to take in food again she would need to have her colon rerouted. He felt it was her biggest issue she was facing at this time to get off the TPN.
He said after making the incision he was just going to look at her surgery (bowel resection) her had done in 2009 to check out adhesions. This is when he found "the growth"! We are so glad he looked around prior to doing the ileostomy. So the first picture is of Annabel's tummy as it looked most everyday for the past year or more. It had become very distended and firm. This was without food at all.

The second picture is of her belly post surgery. Her tummy is so flat! Then the following picture is of "the growth" that had  taken up residence for however long. We knew her bowel loops were filled with air and most always dilated. But this we were surprise to see and wondered how it fit into her small little body.

Annabel is eating now in her g-tube. She is on ElaCare. Her total calories she needs are 800 and her fluid intake is 1180/1200 per 24 hours. Annabel really has never tolerated overnight feeds so at this point she gets very little late at night. She does have minimum gagging/retching which is so much better than before. Her surgeon says she may eventually need the ileostomy but for now we are enjoying being hooked up to as little as possible. We eventually hope to get down to four bolus feeds daily but this won't happen for a will according to GI.

We did see GI this past Thursday and they were very pleased with her progress. She will still experience motility issues but they don't seem as severe with taking "the  problem" out.
We see day by day Annabel recovering and see hints of her normal from over 2 years ago.
Right now Annabel's life seems easy. I don't ever want to forget the last two years and I really never want to revisit this stressful time.
A central line has changed our world. First we had to enlist the help of 3 great nurse (very thankful for their help through a scary time). The stress from just each and every time Annabel had a fever of 100.5 and over. I referred to the central line as a time bomb. One minute you could relax and make plans and in the next instant you were being transferred to a hospital. Any infection in your line (blood infections) can be life threatening. Some of the antibiotic that she had to be on had terrible side effects. The hit your liver suffers with all these infections and just the TPN/Lipids is bad enough. Even though some saw Annabel's smiles when they said Hi to her we saw a very tired Annabel. She just didn't recover like her old self. Each time she became weaker and we saw through her therapies she couldn't do what she had worked so hard to accomplish prior to her central line/TPN lifestyle. Yes it helped her survive for the last couple years but it brought her closer than ever to not surviving.
Prayers were heard each and every time. I wish I could thank each one of you personally but through all the stress I have become lax in my duties to respond to each comment or even posting on the blog.
Hoping that I will posting more pictures of her sweet life. I love showing her off of what she can really do through pictures not my jumbled words.    

Someone asked about ultrasound if it didn't show up. Annabel has had so many KUB's, abdominal ultrasounds, and several CT scans but do to so much air almost nothing could be seen. She was constantly diagnosed with obstructions...just wanted to add this.

You can see in the picture to the right the doctors hand holding the growth and the small bowel that was removed!

Central line removed...

As of this past Thursday Annabel's line was removed. It was bleeding out of the insertion site and it was agreed that it was a very risking line to leave in her arm. We have swam everyday and enjoying not having the risk of fevers, becoming septic, bad liver, etc.
Here are a few pictures but I have some with her swimming and with her sisters. Will download and add them soon! I will also post about what was found in her tummy.

This is Annabel and her teacher on the first day of school...

This is my youngest son who came by to visit Ananbel in the hospital during her last infection due to the central line.

This is her brother Derek and his wife, Linzy, who came to visit after she was released from her surgery.

Annabel just making rounds in the hallway at the hospital!