Tuesday, May 27, 2008

Quick post on why we've been MIA...*Updated***

Here it is quick and dirty:

Orthopedics: Agrees with PT, no need for braces, see again in 6 months at appointment with a PT and AFO specialist to reevaluate. Wasn't much help, didn't want to offer a dx although felt it could be CP, but since hypotonia is not as common it might take until 2.
Same day: woke up with runny nose Wednesday.
Attempted to go to Maine to visit my sister and meet up with my Dad, step mom, and 5 year old brother. Needed nebs every 4 hours, needed Tylenol and much more O2.
Sunday morning come home after a terrible trip. I'm sick now too, fever, stuffy/runny nose, junky cough. Kids much worse.
Start E on Pregnisone Sunday.
Bring kids to ER Monday for respiratory distress.
Spend a few hours in pedi ER.
Chest x-rays.
Edwin has pneumonia AGAIN.
Start both kids on Pregnisone and antibiotics for pneumonia (Serena's chest x ray was ok but start on antibiotics to be on the safe side.)
Edwin eaten barely anything in a week.
Serena not eating much.
Coughing, puking, desats, extreme increase on need for O2, meds, nebs, buggers.
Ugh stress.

Good news: Edwin definitely says Mama when sick and needs me...how cute.
Serena says and does peek a boo with hands over her eyes. Also very cute.
Serena walks everywhere inside and outside with or without shoes. Can get up into standing without pulling to stand on an object. Still sometimes "W" sits, but can now get herself from crawling to sitting on her bum. FINALLY!
E is weak because sick, but hopefully will continue practicing with push toy soon. Asking about reverse walker Thursday with PT, because back yard is finished as a play area and E won't crawl on grass and isn't too fond of the grass carpeting we have laid out in the backyard; I'd like him to be able to use his walker outside on the grass carpeting. We'll work on the aversion to grass and sand this summer.

So send healing thoughts are way. We were up to needing almost no O2, to needing a hell of a lot. Only good thing, we're not losing nursing anytime soon, so I'm not as worried about child care while I'm at work.


**Edited***
Almost forgot, Edwin crawls almost exclusively on hands and knees EVEN today when sick and weak from not eating and losing all his precious weight! VERY exciting!
I haven't actually tried E on the grass carpet (more like the outdoor felt-like stuff you put on concrete.) My mom surprised me and set it all up and with this sickness he hasn't tried. I thought it was the stuff that's kind of prickly and I know E won't crawl on it, so maybe he will be ok with the felt-like carpet thing outside. I'll still ask about the walker with PT on Thursday so he can be upright while outside and practice walking.
Serena is feeling terrible. Can I just tell you I hate CLD!!!! I hate that my kids take such a huge hit with respiratory illnesses. The thought of preschool terrifies me. I sure hope this is the last of our serious respiratory illnesses for a LONG time.
I have to video tape Serena. She talks up a storm and walks/tries to run all over the place. She's such a big girl!!

9 comments:

Melissa said...

Oh, I am sending tons of healing thoughts your way! Give both of those kiddos hugs and kisses from Ross and Riley, their twin friends in PA!

Glad to hear that the ortho doesn't think AFO's are needed right now. I think Edwin is going to surprise you with what he is able to do!

Randi said...

The fam and I will pray for you guys. Sounds like a tough week for you all! I am so sorry!!
Nate doesn't like the grass either and screams whenever I place him on it. Tony likes to eat it. They are so different!
Please keep us updated! I am sure you guys will catch back up to where you were!
Randi

Jennifer said...

oh geez... no fun!

I hope things get better for all of you this week!

I'll keep you in my good thoughts :)

Mommato4miracles said...

WE're sending love and prayers your way. Say some for Sammy too, we're sick too. No fun to have little ones sick, and you have two. Glad to hear you still have nursing hourse especially during this illness.

Sarah said...

Ugh, sorry you guys are sick, too. I hope you feel better. Way to go E on the crawling and saying mama :)

1stson24weeks said...

Hope you all start feeling better soon. Bryce was just sick as well and I thought now that the weather was nice we'd all be in the clear...

Nathali said...

Hope you all feel better soon. It's so scary when they are in respitory distress.

I am so excited that E crawls!!! I hope Michael will follow in his foot (and hand) steps soon ....

abby said...

Feel better, guys! I am so sorry that the kids are under the weather, but heartened by their activity level, talking etc in spite of everything. But now I just am hoping that their little lungs get better soon!

Lindsey: Mama of Andrew, Adam, and Ally said...

Goodnes,, your poor thing! Hope you all get to rest and recover. Feel better soon!