Positive GI Appt

Grandma and Mommy took Sweet Pea to visit the GI on Thursday.  The main topic Mommy wanted covered were the results from the stomach emptying test.  Guess what?!?!  She passed!  My little girl finally passed a test!  Ok, so she has passed tests before, but not as often as I would like.  Come on, what mother doesn't want her child passing EVERY test?  Anyway, her results were within the normal range so there is nothing to worry about there.  Yippee!  We could not be happier!

Aside from that we discussed reflux medications and are going to keep with the 20mg Nexium for a month and see how she is doing.  If things are going well then we can try to drop it to 10mg.  I guess the typical dosage is 1-2 mg per kg so she is at 2 mg which is higher than we would like, but not the end of the world in the short term.  We are really hoping that her reflux starts getting better the more she strengthens her core by standing and other activity.

The other key item was that the GI wants most of her calories coming from food.  The issue with that is that she won't eat enough in any given meal so the formula is our way of sneaking in some extra calories.  We will continue to try to get her to eat more and more, but not worry too much about it.  She is gaining weight and that is what we want!

We are spending the weekend up in our local mountains and it is beautiful up here!  Makes me not want to go home!  No pictures until we return since I'm not on my regular computer, but I'll try to take some good ones over the weekend so there should be lots to share when we get home.

Enjoy the long weekend everyone!  Sweet Pea sends a big kiss to all!

Doctor Updates

Sweet Pea made the trip to Children's Hospital again today and visited her GI & ENT.  Spending 3 hours in waiting rooms and exam rooms will test her patience on a good day, and today was not a good day.  She survived though and we made it through both appointments.

GI: We sat in the exam room for 70 minutes before the doctor came in.  Yes, I'm annoyed!  Moving on...The reports from the radiologist and OT of our swallow study still weren't complete so I tried to share what I knew...which wasn't much.  The doctor was concerned that she was aspirating and wants us to follow the recommendations we were given.  Hopefully the report will be available soon and it will give us more information.  Until then we are continuing to use the Simply Thick honey for all formula and liquids and we are going to be adding baby cereal to any purees that are too runny.  He wasn't concerned that she is still spitting up typically between 2-4 times a day sometimes much more.  It's frustrating, but I'm hoping he knows what he is doing and that we aren't overlooking something.  He does want us to do another test...this one is the stomach emptying study which tracks digestion for an hour to see how fast (or in Sweet Pea's case...slow) her stomach works.  Since she spits up hours after eating, this is a concern.  To end on a good note, he is happy that her weight gain is ok...not great, but not bad.

ENT: This appointment was much better as he is normally very timely and he was this time.  Both her ear tubes are still in good position and don't look like they are close to coming out.  This is great news since we were told that they could be out in less than 3 months.  We are at the 3 month mark and still looking good!  We talked about getting a sleep study and he is going to put in the referral for us.  He wasn't really recommending we get the study though because he doesn't think there is much to do even if she is having apnea issues.  Let me try to explain it as he did...there are two kinds of sleep apnea...obstructive and central.  Obstructive is just as it sounds...something is physically obstructing the breathing.  Central has to do with the brain and sending proper signals out for proper breathing.  The most common "solution" for apnea is to wear a nasal cannula that blows oxygen into your nose.  Most kids rip those out immediately and so they don't do any good.  Daddy & I believe that it is better to at least know what we are dealing with so that we can make informed decisions.  If she does have sleep apnea, I want to know how bad and then determine what we need to try to do.  Hopefully she won't have it and this will all be a moot point, but time will tell.  The wait for the sleep study could be 3 months so I'll keep you posted when we actually get it scheduled.  We go back to the ENT in 3 months again.

To end this post on a high note...Sweet Pea displayed a new trick today.  You know those toys that are a bucket and they have a lid that has different shape cutouts in it?  We have an older one that only has 3 cutouts and I thought I would try it out with Sweet Pea and see what she would do.  I covered up two of the holes with my hand so that she only had one choice and she picked right up on it!  The circles and triangles went in quite easily, but the squares proved to be a bit more difficult because they almost fit sideways, but not quite so that kept throwing her off.  She is far from good at this, but it's a start!  We transferred this new skill to her milk carton toy that has a slit in the top for the cookies to go into and she did that too!  We've just left the lid off figuring that she wasn't able to do this...who knew?!?!  I will have to ask daycare if this is something that they have been working on with her.

Update from our appointments

Today was a long day and I'm so glad that my mom was there with me to help me get through it.  Sitting in waiting rooms and exam rooms from 8:30 until 1pm!  Sweet Pea was a trooper through it all and was quite adorable at times. 

I'm hoping this video works...my first time doing this so let me know how it goes...



On to the serious stuff...here is the rundown...we met with the GI first, but you will see why I've switched them around here...

ENT: Still has fluid in both ears and so ear tubes are going to happen.  The doc is a bit concerned about getting the tubes in where they need to be.  The way I understand it is the DS made her ears smaller and the drum is at a slight angle so it makes it hard (if not impossible) to get the tubes in the perfect spot.  This means that there is a fair chance that the tubes will have to be put back in every 3-4 months.  We hope that isn't the case, but won't know until we try it.  We are scheduling the surgery and hope to have it happen in the next 2-3 weeks, but things haven't moved that quickly at this hospital in the past so I'm not holding my breath. 

GI: Need to have more tests run.  Reflux isn't under control...duh...but could be caused by slow emptying of the stomach.  They were going to do a gastric emptying scan (also called a reflux scan) where she drinks some radioactive liquid and they take pictures of her every minute for an hour.  The hope is that 40% of the drink empties from the stomach by the end of that hour.  The ENT asked if the GI wanted to do an EGD while she was sedated.  So, we went back to the GI after the ENT and left a message asking what he wanted to do.  I received a call an hour later saying that doing the EGD instead of the emptying scan was a good idea.  He doesn't normally suggest the EGD first because of the sedation required, but if she is already being sedated, he thinks it is a good thing to do.

We will be proceeding with both just as soon as they can get them scheduled.  It's good that we get to kill two birds with one stone, but boy did I wish we didn't have to do either.

That brings us to the final bit of news for the day...the GI did read to us a portion of the MRI results...the indentation is being caused by an aberrant right subclavian artery.  He didn't want to give us the actual report, but he did read us a portion and now we just have to wait a week until we meet with the cardiologist.  It's good that they found something, but it's also bad that they found something.  We are hoping that it is something that they can just keep an eye on, but we will know more next Friday.

Let's end on a high note...To reward her for being so good all day I took her to the park around the corner from the house and she played on the new swings.  If you remember a couple of weeks ago I mentioned that they had redone the park by our house and installed a swing set.  I was disappointed that they didn't put any baby swings in, but I figured I could just swing with her on the regular swings.  Well, they put in a baby swing now!  There are 2 regular swings, 1 baby and 1 toddler.  It's great!  Sweet Pea had a blast and we will be going there a lot now.  I'm so excited!  The simple things...we definitely need to enjoy the simple things...I just keep trying to remind myself of that!