CMN and ARC

Annabel had a busy weekend planned. She was to make an appearance at the ARC Christmas card kick-off Saturday morning. Here below she is pictured with Sydney Datcher from Keller (near Dallas). Her platform is children with special needs. You see Sydney is living this life with her younger sister, Simone. As you can see she is such a beautiful young lady with such a huge heart. My prayer for her is that she will accomplish all she sets out to do through her life, all the while bringing attention to special needs children.

Annabel was acknowledge along with several other artist that made the cards. Ms. Ann (her teacher) helped Annabel make her card.

After this stop we brought Annabel home to have a much needed nap. You see the night before Annabel spent in the ER for yet another UTI. She has done amazing since May with no infections until about 3 weeks ago. Just this past Monday she had a follow-up culture to make sure the culture was clear and yes it was. But by Friday afternoon her urine was cloudy and on Thursday night she was uncomfortable. So after calling the Pediatrician Friday afternoon, they decided we needed to go into the ER for another culture. You see Monday morning (tomorrow) Annabel is going in for her central line placement and biopsies. The last thing we need is an infection and a central line. So the doctor came back a few hours later and yes, another infection. Not yet, as bad as the first but so soon. So another antibiotic was started and hopefully she will be able to get her central line placed in the morning. Her picc line is hanging on barely by a thread. The stitches are barely there and I have been a nervous wreck babying them.

So after her nap we went to the Children's Miracle Network Radiothon to be on live. She had been on via a taped session on Thursday, Friday and Saturday. There are two radio stations that had her story on and they did such a beautiful job putting her story to music. Each time I listened I realized what a miracle Annabel's life really is. Also a huge thank you to Emily, who is the representative of the hospitals and responsible for putting on this radiothon. She was also responsible for the Children's Miracle Network Telethon that was back in May.

After the Radiothon we went back home until 6p.m. We went to pick up Ms. Ann and then went to the ARC dinner. It was so nice. Again, they announced the artist to come up on stage. Annabel received a t-shirt with her card printed on the front. It was so nice to see these special children and adults so proud of their work and being acknowledged. Thank you to this organization and all they do to help our children.

Annabel with Miss Teen Texas at the Christmas Card kick-off for ARC

Annabel and Tara during the Children's Miracle Networks Radiothon.


Annabel, Mommy and Tara

Annabel and Rebecca with the two DJ's broadcasting the CMN

Annabel and Emily who works for St. Elizabeth and was in charge of the raising of funds for the Children's Miracle Network.

Annabel and Ms. Ann who shared our table at the ARC dinner last night.

Annabel after being presented as an artist for her Christmas card.

Picture of Annabel's Christmas card she made for ARC

Tooth fairy?????

Well after 3 attempts at home to pull her very loose tooth, we elected to call our pedi dentist and let him do it. It had been very loose for 3 weeks and there was the contant worry that she could swallow it. She was such a big girl and it was very quick. In one of the pictures she looks scared but I think it happen so quick and she was just curious as to why his hands were in her mouth.

Annabel will be going back for surgery this Monday to place a central line (Broviac) into her chest. Also her GI doctor will go in for biopsies a 3 rd time since June. Please keep her in your prayers that it will be quick and we will return home that night. Also,her new hemotology doctor is getting some concerning results. There have been so few post and I am sorry. There are many things going on with Annabel and I am still processing them. There is still no hope for any type of food into her belly and I am struggling with this also. At this time we have removed her from all outside therapy as it seem too much for her body. She tires easily and is pale many days. I will try to update with the findings after her surgery on Monday.

Needing your input....

Beginning of Annabel's week...

Ending of Annabel's week...

So many times when we have unanswered questions the first place I come is to the blog. I have asked many times in the last few years if you out there have experienced any of what we may be going through. So many times we have found answers from others. Once again I am coming and asking you of your personal experiences.

Let me remind everyone that I have no medical experience except from personal encounters with Annabel. I truly don't understand all that the doctors say. I try not to dwell on the what if, or that this maybe what is happening. Only because my mind doesn't understand or can't comprehend that much information. I also try to put some positive with the negative.

This past week we could see changes in Annabel. Some days were great and some she was just plain tired/weak. I will back up and say that Annabel has been on TPN/Lipids since May. We have tried formulas for feeding. We have also tried to use her GJ button but that was found to not work properly after four different attempts. It just shot back up into her stomach with either the pressure/retrograde activity, but this wasn't an option any longer. I can't say enough that I want her off this TPN as I know with time this is not what is good for Annabel. At one point prior to all this her liver wasn't an issue. The only two things that are positive about the TPN/Lipids is that it gives her proper nutrition and great hydration. Hydration is major with all her urinary issues.

Through two different sets of biopsies they have found that Annabel has deficiencies in all diasacharides. (Sorry for the spelling errors) They are struggling to find something that Annabel can take. We thought they had found something RCF (Ross Carbohydrate Free) formula that we had to mix. We began her at 5ml. then progressed to 10mls. By Monday she was vomiting and wasn't feeling well at all. So we had to pull her from this formula. These formulas have to be

mixed with some form of sugar and they can't find that she can tolerate. So that leaves us basically TPN/Lipid dependant for now. So as I am trying to accept this her GI dr. calls this past Wednesday and says her liver ALT, AST are 690/400's. She has run high before but not over 200. So the doctor was concerned as to what we should do with her. I suggested repeating her liver enzymes to see if this could be lab error. He agreed but this was not so. Also earlier in the week we began to suspect Annabel had a UTI. (For all you faithful readers, I bet you were enjoying me not whining about her continuous UTI's) So Dr. B cultures it and it came back Thursday with a very high count and Houston says we need to be inpatient. So they put her in the hospital. To me she didn't look sick enough to be admitted but with the central line and the gram negative bacteria and throw in her high levels in her liver we agreed. All this said was everyone worked together to get full time nursing in place. Also our wonderful company Coram who supplies the TPN/Lipids was able to get us her IV antibiotic to our door Saturday morning and we were allowed to continue this treatment at home.

So after all this rambling I was wanting to know if anyone had they liver experiences and what it all meant, what treatment,etc. was used. I realize that some children are placed on TPN/Lipids while awaiting liver transplants, but this isn't an option for sweet Annabel due to her Trisomy 18 diagnosis. Her levels after 6 days are in the 400/upper 100's. The first numbers being ALT and the second AST. Hoping that they will continue to come back down. I understand how busy everyone is with a sick/special needs child. If you have anytime to write about your personal experiences I would appreciate it so much. Also, if you prefer to email, my address is suzyque92@hotmail.com