Friday, May 29, 2009
Wednesday, May 27, 2009
Unfortunatley Anslie lost weight from her last weigh in so she now has a feeding tube (or NG tube). It was rough having to hold her down while they inserted it into her nose and down to her stomach. She had her first feeding this morning and slept through most of it. She tolerated 5oz of the formula and still ate half a cookie when she woke up from her nap. That's encouraging! She will get 5 oz of formula 4 times per day. This will hopefully give her the nutrients she needs to pack on some weight (so we can get the heck out of here) and also stretch her stomach out a little bit so that she can stand to eat more in one sitting.
We hope that with the help of the forced feedings we can get her home by Sunday at the latest. They want to leave the tube in for another month after that, just to make sure she is getting what she needs, as well as learns that food really is her friend. The good news is that the equipment should be easy to operate and we will need little more than a few check ups with a pediatrician to monitor her weight gain. This means that we can move forward with our plans to move to NM.
Right now, Kevin is scheduled to start at the academy on June 8th. If we get home from the hospital by Sunday, that will give us roughly 5 days to get our stuff packed and get on the road, 2 days for travel, and then we will be in our new "home sweet home" of Roswell, NM.
Kevin's last day of work is tonight. He took some vacation time to help pack up the house and to make arrangements for our move. We will be taking turns staying with Anslie in the hospital and packing at home. It's going to be quite a feat to accomplish, but we are anxious to move on with our life, and happy that Anslie will be healthy enough for us not to worry about her.
Things are starting to look up, even though we still have another 2-4 days here in the hospital. Again, visitors are welcome! And, you can bring your kiddos too! Anslie would love to see some her old friends! We are at Rady Children's Hospital, room 243. Visiting hours are 9am to 8pm!
Tuesday, May 26, 2009
So, I think we are stuck here yet another night - our 9th night here. My back is screaming from sleeping on the rock-hard fold out "bed" - the kind that starts as a comfy looking chair and then turns into a very uncomfortable cot.
Anslie is pretty frustrated here as well. She says "sigh" and points to the patio outside of our room, begging to play in the fresh air. We go for a little while, but there isn't much to hold her attention out there. Fortunately the play room opened up again today and the attendants are sweet to play with Anslie, something I can't quite find the energy to do right now.
Sleeping is rough on both of us, especially with nurses, doctors, and janitors who have perfect timing for coming in our room right when we are trying to catch some zzz's. Annoying. And the banging, talking, laughing, sirens, life flights, crying, doors slamming, and chairs scraping never ceases. 24 hours a day. Yuck.
Anyway, I don't mean to sound blue, but this hospital stay is getting old. I am just grateful that there is an end in sight for us, something that some of these kids don't have to look forward to. It makes you realize how lucky you really are.
Visitors are welcome. Visiting hours are between 8am and 8pm.
Sunday, May 24, 2009
The reason why this is good news is that if the reason Anslie isn't gaining weight is due to GERD, it's an easy problem to fix. They prescribed a reflux medication for her, one she has been on in the past, just a very aggressive dose, to knock the acid out. They were pleased that Anslie was continuing to eat while she was experiencing the reflux, so the GI has high hopes that with the help of the meds, she will start to feel better, will then eat more, her weight will increase, and then we can go home. And they said this could all be possible without having to put a feeding tube in her. (phew) Time will tell, but we have breathed a hugh sigh of relief for now.
We are still waiting for the results from her biopsy which will confirm the reflux, and will also let the docs know if there is anything else going on. There is still a possiblity she is is having trouble with some food allergies, but this will all be revealed in the test results. I am anxious to find out what they found, if anything, and move on with living our life. It's hard to see my baby stuck in a hospital room when she should be having fun and playing outside and with friends.
We are probably going to be at the hospital through Tuesday so they can monitor her progress with the reflux meds, dietary supplements, and weight. That should get us through until we get her biopsy results, and then....we'll see.
I am feeling a little more positive today because we have gotten something out of this whole ordeal. And if all that's wrong is reflux, as I said before, it's a fairly easy fix. There is hope that life will return to normal soon. :)
Thanks for all of the prayers. We feel your love and concern and we really appreciate it!
Saturday, May 23, 2009
So, here is where we are at today:
Anslie underwent her endoscopy yesterday. It seemed to be a fairly easy procedure, only taking about 30 minutes. The GI told us that everything looked normal in her esophagus and stomach. I was relieved, and not. The only abnormality they found was in her upper intestinal tract. There were little white spots, spots that the GI said we all have, but that were unusually pronounced in Anslie's intestins. They biopsied her esophagus, stomach, intestins, and these little white spots. No explanation was given about what these little white spots could be, only that they could possibly be the reason why Anslie isn't gaining weight, but probably have nothing to do with her aversion to food. We are now waiting for the results of the biopsy.
In the meantime, they have placed a pH probe through her nose, down her throat, and into her stomach for a 24 hr study. They will be monitoring her pH levels to see if acid reflux is an issue. I feel like they aren't going to find anything, considering Anslie has been eating really well the last couple of days.
This is the kicker. The docs are going to try and start Anslie on a supplemental formula to help her gain some weight quickly. When asked when we could go home, they told us that she could not be released from the hospital until she gained some weight. (She has lost a little weight since we have been here.) I was a little taken back because, with Anslie's track record, to me that meant we could be here for a very long time. The doc told us that if she refused the supplement or if it didn't help her gain weight then they would put a feeding tube in her to force it down her. Very upsetting, but necessary, I guess. (We should expect to be here until Tuesday.)
I told the doc about our situation with plans to move to NM and she seemed really worried about that, telling us that Anslie's weight issues would probably not be solved for more that 4-6 weeks, with the help of the feeding tube and an OT. She recommended that we either plan to stick around here until Anslie's condition is under control, or that we should put the feeding tube in, get her weight up, and then move to NM immediately and turn her treatment over to the Pediatric GI's there (in Albuquerque -- which will be over 3 hours away from where we will be living).
I'm not sure what to do. Anslie comes first, but Kevin needs to keep his job. We have high hopes that his boss will write a letter to the Academy and get another extension for Kevin. We'll see. I will update more when I have more info.
Sunday, May 17, 2009
Make sure you visit the link above (or below) to look at everyone else's entries! (PS- Thanks again, Kenna, for being such a great model!)
I am submitting this photo into the www.iheartfaces.com Blurb Book photo contest. I am granting I ♥ Faces permission to use my photo in a printed version of a book for commercial use and possibly advertising of a photo book on both the Blurb and I ♥ Faces web sites.
Saturday, May 16, 2009
We are excited for the opportunities this new job will offer our family! Along with some extra income, the experience will be invaluable for Kevin. This change will require some sacrifices -- like the beautiful San Diego weather, friends, familiarity, and the convenience of having anything we could possibly want within a short distance of our home. But we have weighed and measured (and prayed a lot) and have decided this is the right thing for us to do at this time.
We will dearly miss all of our wonderful friends here in San Diego. We will dearly miss San Diego, too. The greatest consolation is knowing that this is only a temporary transfer, and we will only be gone for 11 months at the longest.
Feel free to send me an email or give me a call if you want more details...I'm happy to share the (little) information I have!
Sunday, May 10, 2009
Check our http://www.iheartfaces.blogspot.com to see all of the other entries from the other very talented photographers.
I am really sad that you moved! I wanted to share a few things with you and everyone else that I have come to love about you, my dear friend Diane:
I love that you are always excited to learn new things. It makes me want to learn new things too.
I love that you are so accepting of others, even if they don't share the same religious, political, or social views with you.
I love that you are strong and decisive. It makes others feel secure when they are around you.
I love that you are (very) artistic, and not always in the traditional way. It's helped me to see beauty in ways that I never could before.
I also love that even though you are (very) artistic, you can can pull back and look at life in a more analytical way. You're balanced and that makes it easy to be your friend.
I love that you are quick to laugh and that you don't care what others think of you.
I love that you are willing to help others in their time of need, even if it means extra work on your part.
I love that you always ask so many questions. Not only does it make others feel like they are interesting and important, it also makes them explore the "why's" in their own reality.
I love that you have encouraged me to pursue my life-long passion of photography and have given me the tools to be successful with it.
I love that I know I can tell you the truth about anything without being judged or mocked.
I love that you are my friend and I know that we will be friends, no matter how far apart we live.
I wish you all the best in your new life and in all of your endeavors. I have really had a good time getting to know you and will always cherish the fun times we had together! And we all know you will be back down to Chula Vista to visit, even if you say you won't :)
Monday, May 4, 2009
PS - I will be posting my entries on my blog from time to time. Take a peak if you're interested.
Sunday, May 3, 2009
Easter was quiet for us. When Anslie woke up, she opened her basket which was filled with bubbles, sidewalk chalk, a glow in the dark necklace, and candy, which mom happily helped her eat.
We had a small Easter egg hunt and then attempted to feed the dyed eggs to Anslie for breakfast. That didn't go over well, so we made pancakes instead. Then it was time for church, a video chat with grandma and grandpa, dinner, and bed. Happy Easter.