Jun
13
    
Posted (Tina) in All Posts on June-13-2010

We were able to get in a visit from some old friends today. It’s so good to see people. I know that sounds simple, but when you have been living a sequestered life, just visiting with friends is huge for us. They were headed in our direction and stopped by for an hour or so on the way to another engagement. After making sure everyone was healthy, we all hung out and visited. Their little girl, Maeve, who just turned 2 years old is adorable. I think my favorite part was her wanting to look around the house for the cat as well as trying to articulate “Lola”, but it sounded like she was saying hello in Spanish (“hola”). Speaking of Lola, she seems to be feeling better and more like herself these days.


And the famous question…how’s Ella? It’s been a rough week for the Bun. Her GI system is not responding favorably. As a matter of fact, since we’ve seen the GI doc last Monday, she has been moving in the wrong direction. We’ve had sleepless nights, lots of changed diapers, soiled clothes, blankets and lots of baths. Diaper changes are frequent and the consistency is from one extreme to the other including mucus and more blood. It just isn’t getting better.

Last weekend, we could tell it wasn’t getting better so we backed down to 1/2 strength with 1/2 pedialyte. At the same time, we ran out of Lactinex (probiotic) but the GI doc wanted us to try Peptamen Jr with Prebio. That part is nice and convenient because the priobiotic food is already mixed into the liquid formula, but then things became worse. After 4 days, we thought it might be the new food. She did seem more uncomfortable. So as of yesterday, we switched back to regular Peptamen Jr and spent the money for a new priobiotic called VSL#3 ($65 for a 10 day supply). This is the probiotic that her doc told us to use if she did not tolerate the Peptamen Jr with Prebio or our insurance was not able to provide the food. Even though it is pricey, she is just having such a hard time with her intestines that we felt giving the probiotic was a necessary step. Hopefully, it helps her guts feel more comfortable.

The first GI test is this Monday – the barium enema. It almost seems like the tests can’t come soon enough. I wish we could do them both on Monday, but they have to be conducted separately at least by a few days, but he prefers a week. The second test is not scheduled until the 22nd. The process just feels like it is dragging along. I’m planning on touching base and leaving a message for him tomorrow, to give an update. We’ll see if the plan changes at all.

It’s kind of depressing because we thought that we invested all this time and effort by having to go through surgery and the hospitalization. Now, we’re having daily issues with her GI system. I guess I thought that it would get better after surgery, especially with more than two months under our belt. But it isn’t and honestly, it is depressing. I’m only having to do the clean up from the mess. I can’t imagine how Ella feels. We calculated as of 8pm tonight, we had 12 diaper changes today (there were 6 just between 3pm and 7:30pm).

Please pray that we’ll be able to figure out what is going on with her guts (even with just the barium enema tomorrow), that she will begin to tolerate feeds and feel better soon.

1 Corinthians 13:6-7 (NIV)
Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.








Dotty on June 13th, 2010 at 11:44 pm #

always in our prayers!

Lesli Richards on June 14th, 2010 at 3:47 am #

Poor sweet girl, and mom and dad too! Praying for you all. I love the picture with Ella and Lola.

steve and joan on June 14th, 2010 at 7:09 am #

Sweet Ella, you are quite the gymnast!!! SOrry you are not feeling really good yet. Bless your heart and prayers with you and your folks. Our thoughts and prayers continue for you all…..hugs, Steve and Joan

Liz Nelson on June 14th, 2010 at 7:43 am #

I can’t beleive how much Ella has grown. Love the picture of Lola and Ella. Nayeli likes to suck on her toes and feet too. They are so cute when they do that. I always have all of you in our prayers. I hope and pray that she is able to start eating and tolerating feeds.

Jennifer Harris on June 14th, 2010 at 8:08 am #

Ella is so beautiful and we pray for her body to heal naturally.

Williamsburg on June 14th, 2010 at 11:10 am #

Ever tried administering meds via toes?? 🙂 Great to see Ella keeping up with her yoga in the midst of everything. We will be very eager to hear how the barium test goes today. Thanks for keeping us updated with the positive, the negative and the just plain discouraging. Love you always. XOXOXO

Kelli Billman on June 14th, 2010 at 11:15 am #

The pictures of Lola snuggling with Ella are just priceless.

Eve Sheridan on June 14th, 2010 at 2:21 pm #

Seeing you three yesterday meant so much to us. Ella, you are even more beautiful in person than in your photos. Praying that the GI issues start moving in the right direction and that you all are able to get some rest. Maeve says hi to Lola and “the cat” too.

sherry martinez on June 14th, 2010 at 5:49 pm #

In am so sorry to hear about all of her diaper changes. I do not know if it helps but cayden threw up for three months straight at least three to four times a day. I felt much like you do now. we also needed a surgery to rerepair his diaphgram. although he still will throw up especially when he is very upset or laughs to long and hard. it got much better so i hope in time you will get the same releif. Our very special babies can be challenging to say the least. Yesterday we made a trip to disneyland as that was a wonderful welcome to a feeling of normal. I hope I can bring you some hope and peace in the coming days, with my sharing of this experience with you. hugs and love sherry and baby cayden

kara on June 17th, 2010 at 10:44 am #

That is so cute. My mother has pictures of me sucking my toes as a child.

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