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Thursday, February 12, 2009

Clapping but not Crawling

She started clapping the other day. It was great seeing her realize if she hit her hands together they made noise.

She was referred to Early Intervention (EI). The specialist wasn't too happy that she's not crawling yet or making attempts. But that's our fault, we hold her too much ;o) So we've been putting her down on the floor more.

We have been really enjoying her health. It takes perseverance each day: she needs nebulizer treatments to prevent breathing problems, we try to turn the air purifier on and humidifier every night. It's just a daily process that at times, especially when she's doing good, it's easier to say I'll do it tomorrow. But I try to remind myself that tomorrow could be that window of a bad reaction. We are just grateful for each day she's healthy.

Monday, February 2, 2009

Today's Bronchoscopy Results

Ariana had her bronchoscopy. The pulmonologist referred her to an ENT (Ear, Nose, & Throat)doctor. She was diagnosed with Tracheomalacia before she left the hospital after she was born, and today they added Laryngomalacia to that.

Definitions found online:
Tracheomalacia in a newborn occurs when the cartilage in the trachea has not developed properly. This causes the wall of the trachea to be floppy rather than relatively rigid, as it is supposed to be. http://tracheomalacia.org/

Laryngomalacia is the most frequent cause of stridor or noisy breathing in infants. It occurs as a result of a floppy portion of the larynx (voice box) that has not yet developed the strength to provide rigid support of the airway. During inspiration, negative pressure is created through the larynx, which results in a collapse of these structures into the airway and a narrower breathing passage. The partial obstruction is the source of the noise with breathing. http://www.cssd.us/body.cfm?id=464

What does all this mean to us...not sure. As of right now we are doing everything we are suppose to. In the past 2 weeks we've stopped taking her out, unless we have too. Carlos and I have been alternating on going to church and we were so grateful to have Megan stay with her one Sunday and women in our Care Group volunteer to take turns so Carlos and I can go to church.

I didn't think to ask our Pulmonologist why an ENT doctor, I understand this affects the upper airway/throat area but everything I've heard and read tells me she needs to grow out of this. Unless they felt she needed a stent or a trach; which I hope she needs neither. Aside from the frequent hospital visits, she's eating fine, gaining weight, and growing (as you can see from the pics) so we will see.

I know the ENT is from CHOP (Children's Hospital of Philadelphia) and I'm just waiting for a call from them. They will do another bronch on her and then decide what we need to do. Thank you all for your continued prayers. Kathi, I hope you don't mind me quoting you, but you posted, "It is truly amazing to ponder that while the Lord is literally sustaining the universe, maintaining the orbiting of planets, and keeping stars suspended in space, He is intimately aware of ALL the details of our lives." And it's amazing truth...He is aware of every detail in Ari's little body. There is no better place to be, than in God's hands.