Horse and Water, Yes Please

Mia started back to MARE on Tuesday. It was a super cold, rainy, windy day...so they had a barn activity instead of riding horses. She had a blast, she got to groom Lady and feed her also, they had her doing really good activities with her hands and speech. She was really excited to be back.

Today she started with aquatic therapy. It's once a week and it's with her regular Occupational Therapist, whom she loves...so it's perfect. Brad got to take her because it was after work hours, this was really nice because he doesn't always get to see her therapy sessions. She loved being in the water and did not want to get out...they had her working on blowing bubbles in the water, clapping her hands under water, and some other activities. She's had a great two days of activities.

We started her new appetite medicine on Monday and yesterday she was so completely drugged that we decided to cut the dose in half and slowly work our way up. She's holding steady at 27 1/2 pounds, so we'll see how she does here...if the medicine makes a difference.

Calvin has started the tantrum phase of life...everything Mia has he wants and when he can't have it he will run around crying and then throw himself on the floor in his ultimate display of upset. I sure hope this stage passes quickly. :)

ENT visit

We met with a local ENT today who has a large amount of pediatric patients in his practice. He told us he does 1-2 surgeries a year for choanal atresia (Mia's blocked nostril), so we decided to get an opinion from him regarding a second surgery. He noticed that her right ear was opaque when he looked in and then he did a test to see the pressure in here and it's really low because she has quite a bit of fluid build up behind her eardrum from her blocked nostril. He said her hearing is at about 30% in that ear because of it. His recommendation is to do the surgery, but also to put in an ear tube in that ear to drain the fluid and to keep it drained for about 9 months. He would do the surgery at a local hospital and in talking with him, his knowledge of the procedure and what to aligns up with all the other doctors at major hospitals that we've talked to...so, pray for wisdom as we sort through whether or not to do this in Bakersfield. If we did do it here, it could be done in the next couple of weeks sometime, so it looks like it is a surgery we are closely approaching in the near future.

What A Big Boy!

This week I tried Calvin at the big table in a booster chair...he loves it. So far he's doing great eating off of a plate...I'm hoping he doesn't realize he can throw his plate on the floor. So far, so good.


And of course anything that sissy does, brother wants to be a part of...so if sissy is reading books on the potty, the brother is right there too.

Orange County

Today we made a trip to Children's Hospital Orange County, otherwise known as CHOC. We met with their GI doctor who heads up a very good feeding clinic. Mia has been doing well eating recently, but she's still not gaining weight...she's at almost 28 pounds which is where she was in August when I stopped the pediasure and cream. So, we just were hoping for some new insight and suggestions. We felt like it was worthwhile to have a fresh pair of eyes look at her and her history.

First off, he told us that we've done an amazing job getting her to where she is now...we know that is completely because of God and we are grateful that He has healed her to where she is now.

Second, he told us that for her height, she is on the skinny end of the scale, but not malnourished in any way and that yes, she is skinny, and could stand to gain a few more pounds, but she's actually within the realm of ok. That was encouraging for us to here.

Then he told us how sometimes the anti seizure medicine you are on, like keppra, can decrease appetite. Obviously the benefits of the medicine far outweigh the potential side effect of a decreased appetite, but that was interesting to know and realize might potentially be contributing to her lack of appetite.

He indicated that her bowel issues and slower emptying stomach might also be contributing along with a possibility that neurologically, she doesn't recognize the need to eat, etc.

His thought was to put her on some medicine to increase her appetite, try it out for 4-6 weeks and see if it makes any difference. There are two possibilities for this and so we'll be trying one out here over the next couple of weeks and if that doesn't work we'll try the other one.

He did feel like we should try to find a feeding therapist locally...ha. That it could be beneficial for her to see one just to rule out anything major that we might be missing, so we are going to look into that and see what we can find for her.

Needless to say, it was a long trip, but an encouraging trip. And we do praise God for how far our little one has come, she is our miracle.

Calvin

Calvin has grown up so much in the past month, he will often tell me "I do, I do" when I ask him if he wants to do a particular activity that he enjoys, like puzzles or coloring or going outside. Here's what we did today.