For the better

I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:

A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?

Looking the other way

I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.

Love’s own reason

Perhaps you’ve heard; perhaps not. The divorce rate for special needs parents, according to word of mouth, is 85%. I’ve also heard 82%. Upon doing some research, though, it’s hard to know where this statistic came from, or exactly how old it is. (With the assumption that the divorce rate goes up each year, that percentage might be higher.) I can’t say that no one knows where this statistic originated, because I haven’t talked to everyone. But on average, it seems to be accepted. People – especially people who care for those with special needs – hear this and nod. Yes, they say, I believe that.

Reconsiderations

Namine continues to amaze us. After a recasting experience that can only be described as traumatic, she recovered quickly and easily. So much so that Jessica and I are forced to reconsider what we previously thought was an easy decision.

Trach/vent clinic, then recasting

I’m sitting here at the hospital waiting for the valet to bring my car back, so I figure I’ll start tonight’s post. I really don’t like making longer posts from my phone, but it’s either this or keep hitting “refresh” in TweetDeck, and since the 24-hour autism event at The Coffee Klatch ended earlier today, my stream has a lot less to read.

Namine’s trach/vent clinic visit

Today is the last day that Namine has to wear arm restraints! Yay! Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we do know now that it will only be a 2-day stay in the hospital. The first day will be a bronchoscopy, plus putting a cap over her trach to see how she does while awake. (The cap is similar in nature to the Passe Muir speaking valve, except that it will block air from going in or out of the trach.) If that goes well, […]

Holy Crap

It’s been a looooong time since an update. I apologize for that, and I can only hope that we still have some readers! Jessica and I are without an internet connection at the moment. I don’t really know how long I have to post this, either. It all depends on when “linksys” realizes someone is borrowing his internets. (Although judging from the default settings, it’ll be a while.) So, lemme give you a quick rundown of the happenings here: Namine turned one year old, that’s the biggie! Our little girl is getting big, and quick. She’s pulling herself more and more with her arms, but she’s also moving her legs, as though to crawl. Getting stronger by the day, that’s […]

Birthday Party!

Wow! We get to celebrate a very deserving and happy 1st birthday. Long ago over a year ago we were told that she might not make it this far, but she has and she is doing better than anyone can believe. She is the joy of our lives and the happiness that never goes away. She is doing fabulous. She doesn’t have to be on the vent except at night. She is stating perfectly and she is learning to move. We don’t have another doctor’s appointment until the beginning of August so we are home free for a couple of months. We are celebrating her first birthday next weekend, and her reaffirmation of her baptism. We can’t thank all of […]

Finally:)

Sorry everyone for not posting more often.  It has been quite a hectic past couple of months.  Namine has been home since March and doing great.  We spent two days in the hospital for heart monitoring and they called it equipmentitis.  She has been stating in the low 90’s to even 100% O2 stats at the cardiac visits.  We are slowly weening her off of the vent and she is up to about 12 hours on the trac collar during the day and the vent only at night.  She is up to about 2 hours on the HME which is awesome.  She hasn’t gained any weight and she has grown an inch and a half.  The biggest news that we […]

Jaw Distraction

Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of the vent then we have been doing. She needs to be off of the vent completely for two months. When that is finished then they will run a series of tests to find out if the jaw distraction is what she needs and if it will help. The good news we have been pushing Namine a little harder to come off of the vent and […]