Update on Raegan Phair

I've spent a lot of posts updating everyone on Hudson every month and it's time to an update on our sweet Raegan Phair.

She is 2.5 years old. How is she almost turning 3?! I just can't believe it. She's so independent and is so smart. She remembers EVERYTHING! No seriously. Something could have happened months ago (like mommy screaming when she saw a spider and then tried to kill it, but I failed and screamed some more) and she will talk about it when you mention spider and how scared mommy was. So just be careful what you say around her because she will remember!

Oh and watching her with Hudson just melts my heart. She gives him the sweetest hugs and they love to wrestle. Then the next second she's saying "No Bubba!" and running away with the toy he's trying to take from her. Hudson loves to go in and wake her up in the morning. I put him in her crib and he crawls on top of her and just loves on her. You'd think when she woke up she'd be cranky that he was in there, but she wraps her little arms around him, and hugs him right back. Be still my heart.

Alright, back to sweet Rae. As many of you know she was born with Pierre Robin Sequence. You can read more about what that is here. She had her cleft palate repaired when she was 9 months old. We see her surgical team once a year just to "check in" on her. This past November we went in for check up and lots of things came to our attention. I've noticed that her speech was falling behind. They sent us for a speech, feeding, and OT evaluation. After the evaluations, they concluded that she does in fact need speech and feeding therapy. She struggles with eating. It is a fight most of the time trying to get her to eat. Having a small jaw makes it tough for her to chew for long periods of time without getting tired. Her speech is behind because she she has mild hearing loss. Children with Pierre Robin are prone to ear infections and they are also have small ear canals which results in fluid sitting in the ear canals. They said it's like she's walking around with ear plugs in. She isn't hearing the way she needs to to be able to learn to speak correctly. 

They have recommended another set of tubes (hers have fallen out since they placed them at 9 months) and they also are recommending taking out her tonsils. The ENT said they are huge and attributing to her snoring and gasping at night. She had 2 sleep studies done when she was 3 and 4 months old that showed she had obstructive sleep apnea. (normal for a Pierre Robin child). They want to do another sleep study to show that she still has it and taking the tonsils is necessary.

So right now we are trying to get the sleep study scheduled (they can't fit us in until March 12 and that just won't do). Once that is done then we can schedule her tubes and tonsils. Another surgery. I'm sure it won't be her last. It's so hard for me sometimes because I look her and I don't see everything the doctors see. I see my sweet, precious baby girl. There's nothing wrong with her. She doesn't need surgery, but she does. She needs surgery. She needs therapy and will probably up into elementary school. I hate seeing her struggle with communicating. She knows exactly what she's trying to say, but when I don't understand her she gets frustrated. It breaks my heart.

But for now, I choose to be thankful. Thankful that her PRS (Pierre Robin Sequence) is not involved with another syndrome. Just a random happening. I'm thankful that she is thriving and just needs a little help in a few areas. Oh and we just got the news that insurance approved her therapy to be done in home! This is huge! Children who have therapy done in the home tend to do better because they are practicing all of these concepts in their home where they are comfortable. This also helps with Hudson as well because the only time they could fit us in twice a week was during his nap. So now he can nap while they do therapy in the play room.

Now if we can just get moved into our house, get the surgery done, then we can get started with therapy. That's not too much to ask right? Phew!

Now a photo dump of my sweet girl because I just can't get enough of her cheeks. Can you?







































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