Tuesday, October 21, 2008

One day, Four specialist appointments

It's been busy!

Here's a rundown of the day's events as far as the visits go...

Emma- GI

The most wonderful piece of news this morning was when the GI doctor came in and said- wait, THESE kids are being referred to me for failure to thrive??? If I didn't see her every day I wouldn't believe how BIG Emma is now!  She's 27lbs!  She gained 5 lbs the week before last and is continuing to make gains.  I'm so pleased we've found an appropriate calorie substance that will put some meat on those bones!  The GI also said that the heart is now fully repaired and that makes a HUGE difference.  So no concerns about her diet (other than of course the idea she takes no solids, but that's not his area).  So we'll just keep doing what we're doing for Emma's diet.

Then the constipation, he prescribed Miralax.  I knew he would, but I didn't know an appropriate dosage so I hadn't started it on my own.  We'll start with 17 and see where to go-up or down- from there.  Fun stuff, this is for her chronic constipation.  Hopefully it will do away with the need for enemas all together!!


Micah- GI

Our GI is convinced that the spitting up is very common with kids with Ds and it's not a great worry.  He said if the Zantac isn't stopping it but is doing away with some discomfort, he'd like to try Prevacid.  He doesn't think it's going to go away but wants to keep him from having esophogitis from prolonged exposure to stomach acid in the esophagus.  But the spitting up itself likely will continue for some time still and he'll hopefully eventually out grow it.

Also, he said to just continue the slightly thickened liquids since Micah gags and throws the bottle when we give him thin liquids such as water or milk or juice.  We thicken them with babyfood and sometimes a baby cereal like rice or whole wheat.  Continuing that is necessary and he said we'll reevaluate him in 6-12 months as far as the ability to do thin liquids and consider at that time doing a swallow study.  For now, he's not tolerating them so we just won't try to use them... no point in a swallow study to find out whether he is aspirating them or not if he won't drink them anyway!

Lastly, because of the issues and ongoing GI problems he had the first 18 months of life he'd like to do an upper GI to check for malrotations.  He said they're more common with Ds and Micah's symptoms are somewhat indicative of a malrotation so he'd like to rule it out.  That will be done at Arnold Palmer Children's Hospital most likely, so that's good- it's a great hospital.  The other two local options I don't care for as much :) 

We'll see the GI again in 4 months for both kids. 


Next we met up with Sandy and her son for lunch at McDonald's.  Once more... blog land has entered "real life" and Sandy had read my blog and then moved to the area!  She lives in the town where the doctor's appointments are so we decided to meet for a quick lunch between appointments.  Sandy is so sweet!  I enjoyed meeting her and her son, B, and look forward to seeing them on Saturday at the Buddy Walk!


Emma- Ortho

Her neck, we learned earlier, is fine, and today we did x-rays of her hips.  I honestly don't remember what he said (maybe because by that time we'd been out for 6 hours dealing with these appointments) but basically there's no restrictions for trying to get her weight bearing so that's a good thing.  He said more than that but that's the 'important' part that stuck.  She now has a script for knee immobilizers which she'll wear at night and during certain other activities to keep her knees from hyper extending.  She likes to rest her feet on her crib rails and they fold backward when she sleeps!  We'll have to get an appointment with the orthotist to get those and I have no idea how long that will take.


Micah- Ortho

There's no big concern for him, just the unusual curviture of his spine- it goes out in his lower back where it should curve in.  He had x-rays which were fine so we're just watching it.  No big deal which is a GOOD thing.

We go back to Ortho in 6 months for both kids.


All in all, a script for Prevacid, one for Miralax, a referral for an upper GI, and a script for knee immobilizers.  Two appointments in 4 months, 2 in 6 months and that 7 hours turned out to be productive after all...


  1. PLEASE tell me what you are giving her! My 8 year old is still less than 30 pounds!! ugh! She has a g-tube, but we have so many issues with that!!!


  2. Good news for both of them! Our son Tommy weighs the same as Emma and we give him 1 teaspoon of Miralax plus 2 teaspoons of Senna which the combination of the two seems to work really well. One helps with the absorption of water (miralax) and the other helps soften the stool (senna). I know that each child is different, but just wanted to share this with you as I found the dosage for miralax really confusing. We love your blog. Especially on good news days :)

  3. I am glad things went well! I know several appts. in one day can be exhausting for all involved. Also, for some reason since our computer crashed I can see the stuff on the right side of your blog. Could you send me your email address again? sharil@live.com. Thanks! :o)

  4. Oh how, HOW I wish your blog had some sort of search function.

  5. WOw, so Miss Emma is possibly going to walk someday. That is a huge thing. Miss our daily talks. Getting ready for Kristopher's event at school. Love, Mom

  6. so happy that everything turned out well and even better than first anticipated!

  7. Wow, what a busy schedule!! Glad it was good news!

  8. So glad the children are progressing so well!!! Praise God, I'm so happy for you all. Glad you are home and getting settled back in. Awesome pics of the cruise as well!