Looking Good

I guess I forgot to publish this post sometime LAST year...

In the past month Ellie has had 3 doctors visits, all with positive outcomes.

The first visit was to check her pacemaker.  I often forget that she has that pacemaker unless I tickle her on her stomach where there is a hard spot on her left side, or see it when she is stretching.  It has seemed to be the least of our worries over the past couple of years.  At her last pacer check they set her at 100 bpm so her heart would never go below that, but she was capable of beating faster than that on her own.  Now that she has grown bigger, they have decided that her heart doesn't need to be paced that high and they turned it down to 80 bpm which is great news because it means that she can prolong the battery life.  When the battery starts to go bad that is when she would have to have her pacer changed out.  And if she is old enough and big enough at that point they would move the pacer to an area under her clavicle.  According to where she is set right now that should be in about 3 or 4 years.  And at this point it is her next foreseeable surgery.

The second visit was to see Dr. Harnsberger, the pediatric gastroenterologist.  We have always enjoyed each visit with Dr. H because they have always been positive.  She was very pleased with Ellie's weight gain (about 2 pounds since our last visit when her g-tube came out) and she was encouraged about Ellie's progress.  There wasn't a whole lot to talk about.  She released Ellie from her care.  The only thing that we need to worry about GI-wise is the possibility of her getting a small bowel obstruction.  This is going to be a life-ling thing that Ellie has.

Our third visit was for an echocardiogram and an appointment with Dr. Pinto.  Ellie did AMAZING with her echo.  She usually does pretty well, but this time she laid still by herself without me having to lay beside her or hold her, and she didn't need many distractions as she just watched the movie.  I'm glad that she is getting older and that she can understand what she needs to do.  The echo was reviewed and Dr. Pinto came in to talk with us.  I told her Ellie had been off the oxygen at night for a week and we were paranoid that she would get sick in the meantime so we wouldn't be able to do that echo.  We've been watching the kids like hawks and trying to keep the germs away!  Well, we made it and the good news was that Ellie's echo was normal which means that she no longer needs ANY oxygen, not even  at night!  It has been a long time coming and we are so grateful!  It feels like we are normal again.  The only thing that Ellie is on now is a once daily dose of adcirca, a very expensive medication that continues to help control her pulmonary hypertension, and a prophylacatic antibiotic that she takes twice daily.  We have to crush the adcirca pills and hide them in nutella for her to take it.  She doesn't mind taking the medicine every day.  But who wouldn't with a teaspoon of nutella?  Forget a teaspoon of sugar to make the medicine go down!

Last week we had a visit with Ellie's speech therapist, Gaylene.  I had inquired about when she would be done with therapy since she seems like she is doing so well.  We have had early intervention services for a year and a half and they have helped tremendously, but it is also tiring.  Not that I do much extra work with Ellie (she really has done a lot on her own), but they have taught me what to look for and give me ideas of how to help her when she is struggling.  Gaylene did a small evaluation with her and determined that she is on the high end of average for her age.  Next week we will go through a comprehensive evaluation to test her in all areas.  Expressive development was the area that she needed help in the most and the other areas she was pretty much caught up in.  It will be interesting to see where she is at in all categories.  At this point, we feel like she is doing well enough to release her from early intervention services.  YAY!

It has been a great year and we can see the light at the end of the tunnel.  Ellie has come so far with everything and made great progress this year.  We love our precious Ellie Mei (coincidentally, we learned from Rhome that mei mei means little sister in Mandarin.  We named her Mei because it also means beautiful ).