End of Summer

As the summer comes to an end, the Mikels family is doing pretty well. We have finally had some days of less heat and humidity so that Noelle could actually enjoy going outside. Andon is excited to get back to the grind in his Pre-Kindergarten class. I'm finally ready for some cooler weather and fall is one of my favorite seasons! Unfortunately, it doesn't look like Noelle will be attending the Special Needs preschool in our area. In order to keep all of her home therapies, we have to deny her IEP. If we transitioned her to the school system, we would loose our homebound services through Early Intervention. However, the school system told me that it was not a possibility to go to school in the fall and spring, but have homeschooling in the winter...even with a doctors note. I think I want to keep her home one more winter and hopefully have her gain more strength. I think if I kept her at school through the winter, we'd be visiting hotel INOVA way too often. As much as I love the people there....I'd rather have her healthy at home. Her final IEP meeting is coming up...so we'll see what happens.

Otherwise, she's doing pretty well. Still having some lung issues...but what else is new? Her 24 hour EEG was NORMAL!! YAY! I think there is still some question about what causes her staring spells and ticks...but the neurologist said that he wasn't concerned and we don't have to see him for 6 months. Thank goodness because that doctor has the personality of a rock!

The pulmonologist is still trying to figure out whats going on with her lungs. Obviously, they are fragile. Obviously, she's not coming off oxygen for a while. Obviously, her extended ventilator use has really hurt her lungs and it's going to take an extra long time, if and when it heals. Noelle is scheduled for a sleep study to see how she breathes at night on September 1st. She is also scheduled for a CT of her lungs on September 1st as well. The idea with the sleep study is to figure out if she breathes well while sleeping. We know she is able to keep her sats up at night (because she's monitored with a pulse oximeter when I don't have eyes on her)...but maybe she is slowing her breathing or having apnea spells. The point of the CT of her chest is to figure out her lung volume and to check for blebs. Maybe her lungs are relatively small and are not growing with her? She has grown taller...however, she is sooo skinny.

Her respiratory status is really up and down. Some days, she does great and only needs 2 nebulizer treatments each day. She doesn't work hard to breathe and we don't hear a whole lot of wheezing. Some days are the opposite. She needs nebs every 4-6 hours, she working hard and wheezing. On most days, Noelle sleeps about 12-14 hours each night with a 2-3 hour nap during the day. I'm pretty sure thats excessive for a 2 year old.

On to the good news, Noelle is officially an eater! We have cancelled the feeding clinic do to the fact that she is eating everything. She eats about 300-600 calories per day. Anything from spaghetti, pizza, crackers, sausage, yogurt...you name it...she'll try it. If her brother is eating it...she'll eat it. She has turned a huge corner in the eating department. Not entirely a well balanced meal everyday...but huge improvements. Hopefully, this is in the right direction to start minimizing the tube use. The plan is to keep her tube feedings the same and feed her by mouth several times per day. The hope is that she'll pick up some extra weight for the winter/germy months...then if all goes well...start weaning the tube feedings in the spring. Unfortnately, I think she burns just as many calories as she takes in just by eating the food, chewing and swallowing. It's hard work!

Her wheelchair is ALMOST done. We are expecting a delivery at some point next week. I'm most excited about this. Her new braces that go all the way up to her hips are not making her day....and are actually inhibiting her movement. So, I think we are going to get those fixed again.

I think those are the updates for now. We have really been grateful lately for Noelle's journey. Although there have been some really rough times, she's still here. There are other parents that don't get that opportunity. Being a special needs mom (and a normal plain old mom) is priceless. I wouldn't change this experience for the world. I'm appreciative for each and every day I get with my kiddos. I can't take a day for granted. I hope you don't either....


xoxo,

Stacie :)