G Tube Update

It is hard to believe Callie's procedure was almost two weeks ago already.  Things have been going very well!  The G tube is definitely better than the NG tube!  It is so nice to no longer struggle to keep the tape on her little face.  And I like how the tube is now out of sight.  Sometimes I forget about it.  We keep the PEG nice and secure under the velcro strips of her diaper so that it does not pull at the site and Callie leaves it alone.  She does not even seem to notice it.  She had a little discomfort the first day or so home, but quickly went without any pain medication and has been healing nicely.  I was concerned about her army crawling and that apparently bothers her because she does not do it anymore, but she kind of scoots on her side.  The good news is she is now getting up on her hands and knees in the crawling position!  She is not going anywhere yet, but she rocks and I am hoping it is only a matter of time before she figures it out.  

Callie has nine, yes nine, appointments this week.  I am pretty sure this is a new record.  At the first one yesterday we met with her EoE team (GI, allergist, dietitian, etc.).  They officially told us her last scope looked clear and the biopsies taken from her esophagus were normal.  So this means apples and bananas are officially safe foods.  We were given the green light to try sweet potatoes for the next 4 weeks and then we will move on to try carrots.  We are also going to cut one Elecare formula feed from her daytime routine and add the volume to her nightime feed instead.  This plan will allow her to keep her 900 calories/day Elecare diet while hopefully increasing her appetite during the daytime so that she will want to eat more solids.  Callie will be scoped again in 3 months and at that time the PEG will be swapped out for a button G tube.  I am looking forward to that change.  

Another appointment to mention was this morning's meeting with a pediatric ENT.  It was our first time seeing Dr. Silva and I really liked him.  To back up for a minute, Callie has a significant speech delay.  She has a variety of sounds, but really only the "B" consonant sound is clear and she does not have any words yet.  On the day she was diagnosed with PMG we were told she may never speak, so we are just waiting to see what happens.  In the meantime she goes to speech therapy and is learning how to communicate non-verbally (signs and in the future, possibly through technology like an iPad).  Her speech therapist recommended that we have her hearing checked just to make sure she does not have an issue in that area that may be contributing to her delay.  About a month ago she had a hearing test and we were alarmed when she did not pass with flying colors.  They advised the borderline results could be due to fluid in her ears.  She has had two ear infections this year and the fluid could be left over.  So this is how we ended up at an ENT today.  Dr. Silva confirmed she does indeed have some fluid in both ears which could explain the hearing test results.  He advised he would like to give it a little longer to resolve on its own before taking any steps (like tubes).  In the meantime he recommended having a different type of hearing test conducted in his office.  We went ahead and did that today and she passed in both ears!  This was great news and supposedly we can now feel fairly certain she has no hearing issues.  We will go back in six weeks to check the status of the fluid.

Four appointments down so far this week and only five to go!