Happily Ever After...

There is a part two you ask?!? I know, right. We need even more excitement in our lives. And there are only SO MANY hours in one night. However, sweet Celia would like to keep us on our toes for as many of those hours as she possibly can. If it's not feed issues, it's FEET issues. That girl is a sensory-seeking movement machine. Think crocodile death rolling slithery octopus with arms and legs everywhere! She has been getting her leg and/or arms stuck through the bars of the crib for several months now. I'm sure she wakes up when the circulation cuts off- Poor thing!! Adding to our parenting bag of tricks, we now offer limb removal anytime..... day or night- HA!! More concerning, however, is that she has hit her head and gotten a few good sized goose eggs on her head with all that thrashin' and rollin'. The crib isn't growing with her, unfortunately. Since crib bumpers aren't safe, and she OBVIOUSLY needs a larger sleep space, added...

Yes, I know I didn't post Christmas pictures like every other good blogging mama out there. Truth be told, I STILL don't have a camera and returned the one I borrowed from my son, so there are no Christmas pictures. Sniff. On to my rant for the day: Our sleep is... ...random. ...broken. ...minimal. ...lacking. Shall I go on?? Last night for example,  Celia did the "crocodile death roll" around her g-tubing. Not once, not twice, but three times. She set the alarm off from kinking the line two times. She has done the death roll and gotten the cords wrapped around her neck more than once. Yeah. So you can imagine we sleep with one eye open on the video monitor watching for her to start thrashing and rolling. Which is SOOOO restful, let me tell ya'. Then after all those times up and running down the hall, the dog had to pee. IN THE MIDDLE OF THE NIGHT. Stupid thimble bladdered dog. And juuuusssstttt as we were drifting off to sl...

~First and foremost, Celia came HOME today!!! YAY!! ~RSV is a virus and in our area the hospital said 1/2 the hospital is full of special needs children with RSV, AND it's the worst year for RSV they've seen in the last 3 years. ~Very likely, Gianna (also has lung issues) got pneumonia from RSV. ~Celia can get this virus again.... next week, next month, tomorrow even. Because it's a virus, there is no real treatment for it, other than to try to help her lungs. It can lead to pneumonia and for Celia that could become life-threatening. ~Her cough, and spasms could last for 7-10 more days. ~She is "most  critical" for the next few weeks. That means, IF she gets it again, (or anything for that matter) it will be very, very serious for her. ~She needs to be very careful for the next SIX MONTHS to stay respiratory healthy. Her lungs/airway/little body has taken a big hit, and she already was behind the curve with her silent aspirations and lung damage she ha...

Celia was admitted to the hospital on Monday after a HORRIBLE, AWFUL Sunday that I'd rather forget. I was on the phone with my Ped's office and the Dr on call was very wonderful, but thought she could stay home and be seen in the office when they opened on Monday so we went that direction. Keeping her away from germs is a serious business, as is knowing when to go to the ER. In hindsight, we should've gone to the ER, but we didn't know. Lesson learned. By Monday, we were giving her fluids every hour in her g-tube, but we had no wet diapers to show for it. We had a little girl with a fever of 103, dehydrated, and choking on her own phlegm as well as severe coughing fits that left her exhausted. Our Dr was not in Monday, but thankfully the Dr we had spoken to on Saturday and Sunday was. She gave her a shot of rocephin ( a very strong antibiotic) to cover our bases and told me if we didn't have a wet diaper by 2 PM, to head to the ER. In the meantime, we ca...

"God doesn't give children with special needs to strong people;  He gives children with special needs to ordinary, weak people and then gives them strength.  Raising a child with  special needs doesn't TAKE a special family,  it  MAKES a special family." Someone please put this on my tombstone when I die. I should really just let this quote stand on it's own  and keep my mouth shut, but alas, I cannot...... (I did think about trying for half a second though ) I HATE, LOATHE, STRONGLY DISLIKE  really wish we didn't hear comments like these regularly: "She is SO LUCKY to have a family that would even take her." "You guys are AMAZING." "I could NEVER do what you are doing." "Are you looking for sainthood or something?" "Well, even if her life is shortened, at least you gave her a better life than she'd have in China." "Boy, I am SO THANKFUL all my kids are normal." Okay,...

....hospital bracelet to our collection. Yes indeed we did. Our sweet baby Celia caught the crud that her sisters accidentally shared. Yesterday morning, after a very long and rough night of her coughing, I called the Pediatrician to be seen on Saturday.  Except they had no appointments available. Her fever went to 102.2 and we called the advice line at the hospital. They paged our Dr on call. When I explained "all things Celia", and what was currently going on with her, she said, "How far away are you from the hospital? You need to leave NOW." Kinda freaked this Momma out, especially since we are a good 45-50 minutes away. She called ahead to tell them we were coming, and that Celia must be kept in isolation to protect her from other children's germs. So we get there and her pulse/ox is 93. Not great but not super-scary. She and I were quickly rushed to a room, and the Dr came in and ordered chest xrays. Unfortunately, the Dr. was not we...

A sweet friend lost her battle with ovarian cancer. She was a quiet and gentle lady with a sweet, giving spirit. I will miss her. My brother in law has a serious post op infection. Among other complications and has been in the hospital. And they just moved last weekend into a new house. And they had some car stuff happen. So basically they have nothing going on. Three of my four girls are coughing up their lungs. Fortunately, Celia isn't one of them. Unfortunately Gianna is.  We found out today that she has pneumonia in both lungs. Since she already has reduced lung capacity due to her rib anomalies, this can become serious.  Breathing treatments x 4 girls at 20 minutes a pop=  cranky everyone Daddy got to miss some of the fun times with 3 sickies and a g-tubie when he was in Seattle. I happily return the 5 AM "turn off the pump alarm and flush the lines" job to him. I like the 7 AM one better. Okay, let's be honest. The 10 AM feed is my favorite...