Wednesday, May 14, 2008

No news is good news


I guess that we have fallen into the pattern where a lot of people discontinue blogs. If you have gotten into the groove and don't have a lot going on that is news worthy, there really isn't much to write about which is the whole point of a blog. It is very tough to motivate yourself to write that all is well over and over again even though I know that my mom likes to read it and see the pictures. I guess that makes us very fortunate that we don't have a lot of news and that Ellie is doing so well especially when you consider some of the kids that we know and their seemingly endless struggles.

The other thing that makes it tough is that it is Spring and we are outside a lot these days playing with Ellie on her swingset:

We are also teaching her to grow tomatoes, that she calls her 'babies':
Sitting down to write just isn't up there on the to-do list.

I promise that if something funny or important happens that it will go up here.

Now the update:

Ellie is continuing to learn how to eat and chew like a big girl in addition to her Elecare that she guzzles. She does very well with traditional pureed baby food and soft things like avocados but has needed some help to move on to things that are crunchy or need chewing. She would prefer to gum things with her tongue and swallow them whole, but that isn't very good for her digestion not to mention being unsafe. So we help her chew and demonstrate a lot of chewing in not so polite ways. she is getting the hang of it and is very proud to crunch and chew things for us. Our Occupational Therapist came earlier this week and had some great tricks and tips for us to help us along. In the big picture we have advanced Ellie's tube feeds to give her 56 percent of her calories from her tube and 44 percent from her TPN. If you throw in the three meals plus snacks every day we are closer to 75/25 split which is just great. With her ostomy still in place we can't advance much beyond this because of her need for fluids but we will see about some changes in the interim that will keep her moving in the right direction until we reconnect her.

We are in no hurry these days to reconnect her but want to keep moving things forward. Her ostomy output has been behaving lately which is good and keeps her away from needing extra fluids during naptime. Curiously she still won't poop for us without the stimulation of a glycerin suppository but when she gets glycerin, she poops very well for us. Nobody is quite sure what to make of this but hopefully we will know more in a few weeks when she has a endoscopy and motility study done at Children's. There is something not making sense and a look around might tell us why things aren't going so well. A good sign is that when she does poop it is of good consistency which makes us believe that her colon is doing its job of absorbing water. This makes us hopeful that she may not have the chronic diarrhea that is very common with short gut kids.

The most fun for us over the last few weeks has been Ellie's transition from sign language to verbal speech, a rapid switch that gives us head scratching moments every day. A month ago her Early Intervention specialists had some concerns about her language and brought a speech pathologist with them earlier this week. Just like when symptoms disappear when you go to the doctor with an ache, Ellie kicked it up a notch and stated speaking a week ahead of the specialist's visit. As Ellie played with them I watched the speech pathologist write every word Ellie said. Mom, Dad, Kar(lene), eat, noodle, ball, Gus, Book, and on and on it went. we felt a bit silly to have her there but the EI specialists told us that they were amazed with the change in a month and that they felt better after seeing the Ellie show. They will keep coming back each month to check on her but for now they are very happy with her and keep telling us that she is at or advanced for her age, developmentally.
Music to a dad's ears.

So on we go, in the groove and having fun.
More news and pictures soon.

Here's hoping that we don't have any newsworthy items anytime soon.

Oh, yeah, no rubber plug yet, but we keep looking for it. If it is in there it must be like the rocks that are in sheep bellies, bezoars, I think they are called.

I'll call professor Snape if I find it.

4 comments:

Anonymous said...

okay Ellie is just simply GORGEOUS ... what proud, proud parents you must be!!!!! I can't believe you're still looking for the rubber thing - that CRACKS me up!!! One of these days- I'd love for my little ones to meet Ellie (and well, you guys too .. ha ha) ...

love you guys!
Becky Beach

p.s. Paige has those green crocs ... do you have the ducky widgets too? I can't tell what they are!!

Kate said...

I particularly like that the first glamour shot reveals just a hint of her central line dressing.

Astraea said...

She is so beautiful. Those curls...

K8 from CT said...

She is such a doll! No news is great news but we appreciate the photo updates.

When my sister was a kid she had bezoars--at least, that's the term the doc used. She used to crawl around on the carpet and then lick her hands, then crawl some more, creating basically shag hairballs in her belly. Oops. No big trouble from it except the resulting embarrassing story. And, of course, when I was a teenager and got my pet rat, I had no trouble naming him -- he was promptly christened Bezoar.