So much to say

Firstly, let me say that Nestor has come home!!!! He had a terrific time down in Kentucky and Louisiana. I know he's happy to be home...but I also know he had a pretty rip roaring good time down there. Good eats, good sleep and treated like a king. Hey -- we have that here, just not the sleeping part...that is, until last night!!!!

No, no, get your mind out of the gutter. What I am talking about is my second topic here: Amelia has been soooooo sick since she got off her antibiotics after her hospitalization. She has been up nights unable to get comfortable. I've been suctioning her with the suctioning unit we've barely looked at for a year and a half. I've also been putting her on oxygen the last several nights because her oxygen saturation has been horrifying whenever she falls asleep (the lowest you want your saturation to drop is about 92, she's been dropping to 84/85) . So there's been no rest for the weary. Lots of breathing treatments too. Amelia seems to do great during the day while she's up and active (as most of us are when we're sick) but we just couldn't figure out what this new thing is -- she is sooooo unhappy.

In swoops Carrie (insert "Hero" music here) , a great friend who has a son with lots of similar issues to Amelia. Carrie called me the other day, I told her what was going on, she insisted that we take Amelia in to see her son's Pulmonologist, Dr. Marcus -- all the way out in Brooklyn, mind you. She claimed that he is "THE BEST"(by the way, she always claims this...and she's always right!). So yesterday was the big appointment.

Our lives have become a routine of shlepping Amelia from specialist to specialist. The times that you actually leave someones office and think "Wow, that was time well spent" are few and very far between...yesterday far surpassed any experience we've ever had thus far! This office and these professionals were incredible. Nestor and I were speechless! The Nurse Practitioner, Kathy came in and asked us all the important questions. Then Dr. Marcus came in, Kathy gave him the lo-down, he examined Amelia and then said "Let me give you the answers of what is going on here." Nestor and I just looked at each other, then at him and said, "Oh God, yes please!" Basically, he broke it all down to her GERD issues, reflux. All reflux related. The fundoplication Amelia had as an infant has most likely become loose over time and growth (it's where they take the top of the stomach and sew it around the base of the esophagus so when the stomach becomes full it cinches around the esophagus -- not allowing anything to go up it -- hence, alleviating reflux issues). Sooooo...the pneumonia was brought on by micro-aspiration of acids from her stomach, her airway is reacting to the acids -- there is possibly scar tissue forming in her airway from the acids going over all the time, therefore making it smaller and harder to breathe with the reflux and secretions in her throat and she has a chronic sinus infection from the acids going up into her sinuses when she refluxes. Everything is red, swollen and full of secretions! My poor baby. Sooooo....he changed up all of Amelia's meds, put her on an antibiotic for a 3 or 6 week course (not sure yet, have to have a CT scan next week to see how deep the infection is in her sinus cavity), Prevacid and Astelin. We're getting two devices: a Cough Assist (helps her cough) and a Vest (vibrates the chest and loosens mucous plugs). Both will help Amelia get her secretions up and out. We weren't happy to learn about all the things plaguing our little girl and that we're now going to have to deal with but at least it's nice to know what's happening so you can deal with everything appropriately. It makes me realize how unbelievably mismanaged Amelia has been.

I gave her 2 doses of the antibiotic, 1 dose of Prevacid and Astelin yesterday...I have a new child.
Amelia not only slept through the night, but she sounded amazing!!!!! So clear! Unbelievable.


So she was able to go to school today, dressed in her Halloween outfit -- not costume. Nestor is not a big believer in dressing children up unless they're in on it too. I get it, so we compromised and got her a cute outfit that is in the spirit of Halloween! So cute!



Third, and lastly, we have postponed our move to LA for a few months or so.





I have been in close contact with lots of wonderful people out in Los Angeles and the warnings are the same:

• California is broke.
• Services are being cut left and right.
• The amount of therapy Amelia receives in New York will not be duplicated.
• They don't use Speech Therapists out there, they have Occupational Therapists with "feeding specialty". That's 4 hours weekly of Amelia's mandate - GONE!
• The big one: RESPITE IS GONE! Kaput! Not happening! We have 20 hours weekly of respite here.

I am afraid that if we give up services to move out there now, even when the State bounces back (and it will) and those programs are restored, we will not see those therapies and respite again. Once something is given up -- it is very difficult to get it back. I would rather wait a little longer and go out there on the upswing of services and therapies being reinstated. It would have been nice for the three of us to go out there as a family (Nestor has to go out there for Pilot Season in Jan/Feb) but it is for the best to wait a little longer until things are more stable.

"Tanks for weading my blog!"