21 Weeks 3 days

I can't believe that tomorrow Amirah will be 5 months old! Time really does move fast, even with all the challenges we are facing time still races on.

Ok... so Amirah update:

Amirah isn't quite responding the way the doctors had hoped. She is still requiring pretty high vent settings. So, this week (on Wednesday actually) the started her on Pulmicort. Pulmicort is a steroid that is inhaled. The steroids don't work instantaneously. The doctor is basically giving it about a week to see how her lungs respond. The goal here is to being able to start to wean her off the high vent settings.

If the steriods don't work a couple things might have to happen. One is that they really want to increase her caloric intake. The more calories she gets, the more she grows, the more she grows the stronger her lungs get. If the steroids don't work they way they want them to, there is a possiblity that Amirah might need to have more permaent feeding tube put in.

I won't go into what all that would mean at the moment, but will explain it more only if she needs it. Instead I want to ask that everyone just "see" the steroids working...Pray... send her positive energy...do a little "steroid dance"...what every it is that you choose to do. Just send all that light, love, prayers and positive energy right to Amirah's lungs.

The biggest thing we are concentrating on at the moment is her lungs. Other than that she is doing soooo great. The other day her nurse and one of the PT's was raving about how good she is doing. She is right on track for what a 2 month old (Amirah's adjusted age is 2 months should be doing. She tracks people and things as they move. She brings her hands in front of her face. She gets her hand into her mouth. I've even glimpsed little smiles. I can't wait for her big smile to light her face!

So, that's where Amirah is at the moment. Andy and I are having a pretty good week. As usual we've had a few emotional up's and down's, but overall I feel like it was a good week. We have our second appointment with our therapist today and I am feeling positive and motivated.

Another thing I had the pleasure of doing this week was meeting a sweet little girl who also has a trach and her amazing mother. This family invited me into their home to see first hand what it is like to be home with a baby on a trach. Don't get me wrong, it is a LOT of work, but seeing this sweet happy baby just being a baby playing with her toys, looking up at us and smiling, laying and laughing and kicking her feet....well, it just warmed my heart.

In addition to seeing first hand, this baby's mom gave me some great advise. She was so open, honest, friendly...I can't say enough about her. I was truly moved with how great this first experience with an older trach baby was. The little one is about 9 months old ( she was born in Oct, but due in Jan) and she and Amirah have a lot of similar experience. If the mom is reading this blog I just want her to know how much she helped me this week. (I didn't want to use your name, just in case you didn't want to be out there like that).

Ok... that's really it for now. Today is the 1st anniversary of Andy and I's first date. We have been through a big year, but I am so very thankful for all that we have.

As always... please keep praying... Amirah, Andy and I feel the love and support.

Love is always.