Update

We took Riley to se the GI doctor again today for a weight check and to discuss her meds. We felt armed with information and questions after consulting with another doctor outside of Kaiser (thank you, Steve!!!). Unfortunately, Riley's weight has dropped further, 17 pounds 12 oz, her exact weight at 6 months old. (she is now 13 1/2 months) After much discussion we are down to a few options. We are starting her on 2 meds today. One is prevacid, an acid blocker which will help protect her esophagus from getting damaged by the stomach acid. The other, Reglan, is a med to help move food through her stomach at a faster rate so that hopefully if she does throw up, the food has already moved through and into the intestines.We are also mixing a calorie supplement into her food. We will try this for 2 weeks then return for another weight check.
At that point if the reglan is not working there is another med we can try for 2 more weeks. After 1 month if things have not improved she will have a scope to biopsy her intestines to check for allergies or other conditions that could not be picked up in a blood test.
These are our last options before a feeding tube would be necessary. Please pray for weight gain. Riley is definitely not getting the calories she needs and it is very noticeable in her daily activites. Please also pray for Jaron and I to be strong advocates for Riley.
Through this I have felt enormous peace that can only come from Jesus. I know He loves this little girl and we will continue to trust in him for her care.

The beginning of walking

Riley has slowly been working toward further independence as she has started to walk. She is very good at cruising and in the last few days has started taking more and more steps on her own. She has done 5-6 at a time, but is still pretty lazy. :) I am ready for this phase of development and ready to use less stain remover on the knees of her pants.

Rib Eater

Diagnosis

The results of Riley's GI test came back today and showed severe reflux. Her reflux is significant and the acid refluxes from stomach to the mid-thoracic area causing esophagitis. The results of the GI test gave us enough information that we will not have to do the PH probe test tomorrow!!! Now that we know she has GERD, we need to keep her on pepcid for 1 month and if she is improving, we will continue with that med. If it does not seem to be alleviating the acid reflux, we will need to put her on a stronger med.

I feel so relieved at finally knowing what has been giving her so much discomfort for the past few months, that it is treatable, and that she will eventually outgrow it.

Thank you for all your prayers, loving thoughts, comments, phone calls, etc.. We are so grateful to have amazing family and friends.

GI Test

Horrible.
That about sums it up.
She had to be strapped down and fed contrast through a syringe for about 45 minutes, crying the entire time.
The GI doc said she thinks she got all she needed, but did not give any information out today. Hopefully I will know more when we see her doctor on Thursday for the PH Probe.
As a mother, it was probably the hardest thing I have had to do.

Another Test

Riley is now scheduled for her upper GI test which will be on Tuesday. We will take her in at 9 am and she will have to drink yummy contrast so they can xray her insides. I'm sure it will be a hard day. It better be worth it.

Testing

We took Riley in today to see the GI specialist. After reviewing her history, we were given a few ideas on what may be going on, but no real answers. We started off by doing many blood tests and stool samples. Since her stool was positive for blood last time we are re-testing and if it is positive again, she will have to have an upper and lower probe test to determine where the blood is coming from. We also scheduled a PH test in which a tube is placed down her nose and throat and left there for 24 hours. She comes home for those 24 hours and we have to constantly make sure she does not pull the tube out. Sounds like fun. We then take her back the next morning and they download all of the information from the machine to determine if she has reflux. This test will be next Thursday. We are also in the process of setting up her upper GI test in which she will drink contrast and they will xray to see if there are any abnormalities.

She is being testing for absorption issues as well as structural issues so hopefully we are on our way to some real answers.

She is such a trooper and has remained pretty happy throughout this whole process so we are very thankful for that. She also continues to be super stubborn especially when it comes to walking. She has taken a few steps, but knows she can get where she wants to go faster if she simply crawls. She can say mama and doggie, but not much else. She loves to tickle everyone, climb on everything, and nods her head yes when you ask if she wants something. She continues to thrive developmentally, but our peanut just may not quite make the basketball team like we originally thought!