Making Progress

Since we first met with the GI doctors a couple of months ago, Ellie had a heck of a time with her G-tube.  It seems like every time it is messed with things get worse.  After Ellie was on a 3-week round of flagyl to help get rid of her C-diff infection, we went back in to change out her G-tube to a longer one so it wouldn't rub and cause so much irritation at her stoma site.  We experienced lots of bleeding and some stomach content with the new tube, but most of all it was irritating to Ellie and it seemed like there was no answer as to why and how to help it.  It was just her body trying to get used to something new I guess.  After a few weeks and several visits to the GI doctors, we finally went in to see the nurse practitioner at her pediatrician's office and she suggested putting a barrier cream around it so the acid from her stomach content that was leaking wouldn't irritate her skin so much.  With that it finally settled down and things have been good ever since. 

I have not been pleased with the couple of doctors and NP that Ellie was seen by in the GI clinic.  Maybe things are different there, unlike with Cardiology where things are so cut and dry.  It seemed like there were a lot of ho-hums and no real answers.  We have been really happy with Ellie's care from her pediatrician and cardiologist but have not had the same feelings for the GI doctors.  We are going to try another GI doctor in a different clinic that comes highly recommended by everyone.  She is so popular that we have had to wait 3 months to get in to see her.  So by the time our appointment rolls around in August, hopefully Ellie will be ready to part with her G-tube.

Ellie's main struggle this past year has been her lack of appetite.  It has been so frustrating for us (mainly me) to try to feed her and for her to refuse almost everything.  We had hoped with the treatment for the C-diff that her appetite would come back but it didn't.  Everyday we would count every single millilitre of milk that she drank so we could be sure she was getting enough calories in during the day.  It seemed like over the past few months she was only able to take half of what she needed by mouth and the rest we would put through the pump.  I was so stressed out and wanted her to get help so badly that we looked in to some intensive feeding disorder clinics all over the country.  After researching and coming to my senses that Ellie's situation really wasn't that bad, we were referred by our pediatrician to go in for extra speech therapy sessions at the Sandy Rehab clinic.  We have been there a few times.  We play for 30 minutes and then eat for 15-20 minutes.  I think it has been helpful, but it's hard to know since Ellie's progress is so slow.  We are still getting home speech therapy and visits from the developmental specialist.  I don't know if the therapists push me more or Ellie.  All of the time they are telling me to be very silly and animated with Ellie and to do a lot of things that are out of my comfort zone even in my own home, with my own kids.

On Mother's Day we finally got around to giving Ellie a special blessing to help her have the desire to eat better.  It was an answer to our prayers and a miracle that Ellie started eating the next day and we have not had to use her feeding pump ever since.  We have stopped counting her calories and I'm pretty sure she is still gaining weight.  Most of her calories still come from whole milk infused with whip cream and she sometimes struggles to eat much solid food, but she is eating all her calories on her own now which is such a big relief.

Mother's Day
(I wish I would have known my eyes were so squinty)
I couldn't have asked for a better gift than
Ellie starting to eat and being able to go to church together as a family.

A couple of weeks ago Ellie was released from her home health care.  That means no more nurse visits which, lately, were basically just to check her weight once or twice a month.  We liked our home health nurse, Von, but we are happy to be done with her services.

I am often asked if Ellie will have any more surgeries.  At this point, the only thing we know of is that Ellie will have to have surgery to remove her G-tube when the time comes.  I don't know how long they will wait to watch her eat on her own.  We would hate to take it out only to have to put it back in at some later point.  I'm nervous about how she will handle taking her medications orally.  She is scheduled to have a sedated echo at the beginning of August when they will re-evaluate her pulmonary pressures and see if we can take her off her oxygen completely (please, please, please...).  It will have been almost a year to the day since we have been up to Primary Children's in Salt Lake for any procedure.  Wow.

Ellie will be 22 months old on the 17th.  She still has a speech delay but she is progressing.  Yesterday I asked her if she wanted a banana and she will usually sign "want" if she wanted it or push it away if she didn't want it.  Instead we heard her say "nana" for the first time.  Then a few minutes later she wanted to play on the iPad (her favorite toy in the whole world) and she said her version of iPad.  She has been mimicking a lot of what we say and do lately that maybe during this phase she will start talking even more.  In addition to her handful of words a few months ago she has started saying Da-da (which I hear all day long.  It's her favorite word to say), Ma-ma (finally!), done, hi, ow-wee, cheese, and shoes.  It's a good thing that she can sign about a dozen of the essential signs that she needs to communicate with us.

I have been taking Ellie to a parent-tot swimming class while the boys are doing their swim lessons also.  This has been a big social experience for Ellie and she is still quite shy around other people.  She loves the water though, and is good at blowing bubbles (of course when no one is looking) and not afraid to get her head wet.  We've worked on front and back floats, gliding, jumping in to the pool, getting out of the pool, and arm movements.  Half of the time she is just watching, checking out what the other kids are doing with a very serious look on her face.  That's Ellie.

We always wonder what the kids are up to when they are so quiet.
This is what Ellie does - puts headbands around her neck and
reads books in the rocking chair in her room.

We are about to take Ellie on her first venture out of the country.  The only other time we have left home, not including hospital visits, is when we went to St. George a couple months ago.  Ellie did pretty well and the boys were ecstatic to go on a vacation.  They've been a little deprived of vacations the past year and a half.  She isn't a seasoned traveller like the boys used to be, but as long as mom and dad are nearby she is happy.