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...

Celia is a typical 3 year old. She wants to "do it myself." She likes to participate in the daily rituals. Some of which may or may not be a little naughty. Like pulling on her g-tube lines. Ahem. Today she wanted to flush her lines. "I got this Mom. I've seen you do this hundreds of times." "All I have to do is push right here." "Can you move your hand already?"  "I GOT IT!" (one of Celia's favorite things to say is, "Got. It.") Annnnnddddd  I just noticed... I need a manicure. And more jewelry from Tiffany. It is the holidays after all, a girl can hope. Right?

One of the most unexpected things for me, in having a special sweetie like Celia, is HOW MUCH she has changed each member of our family for the better. I've mentioned before that I assumed she would be left in the dust by her three mobile sisters. That is FAR from the case. Yesterday, they were all laying on the floor playing with balls with their feet. Four little sweeties, heads touching, and deep in concentration on the game of keeping the ball going from foot to foot, oblivious to the fact that most children do not play ball this way. Precious. That is one of many examples we are privileged to see on a daily basis. I know Celia's beautiful life will make her sisters more compassionate. They will SEE the person in the wheelchair, not the chair. They will know how to get on the level of anyone with a disability. I. LOVE. THAT. Here is a little glimpse on a typical day.....  Today, Aria was working with Celia and her IPAD.  When her head...

We had another 2 hour visit with mito-reknown Dr S's team yesterday. The whole thing makes my head spin, but here we go... ~She presents WAAAYYY more severely than her tests show. Most of her blood work is unremarkable. Only one test showed a definite positive for Complex 1. Sounds like good news, doesn't it? Not really. ~She still presents VERY severely for this disease. She has almost all the symptoms of Leigh's Disease (google at your own risk- it's a horrific thing) but she didn't have brain lesions on the MRI from last year. To truly have Leighs you must have lesions. Good News? Maybe, maybe not. They want to do another MRI to see if they have developed since her MRI last January. We are not out of the woods yet. ~She has cerebral folate deficiency, and we have been treating that since last June with no real signs of improvement in function or skills. She is on the border for abnormal, so it isn't really severe but it's there. They...

This morning we were up and out bright and early for the twins re-adoption in GA. It is a silly step since they were adopted in China, it was recognized by the U.S. and they already have their certificate of citizenship. However, when they grow up and decide to adopt their own children, they will thank us for the GA birth certificate.  Four pretties in purple.  Celia only has eyes for Daddy. :)  Waiting patiently for our turn to be called.  Sofia want to know, "Why are we here??" and... "Can we polish my nails while we wait?" HA!  Celia's new trick is to show you her tongue. I'm sure the Judge took no offense.  The very last step (besides ordering their birth certificates) and we are DONE!! Finite. Family is complete. Did I mention D-O-N-E?!? Ahhh, what a wonderful feeling!!  Our attorney is AWESOME! Her name is Christina Bennett, and if you are in the North Georgia area, you simply MUST g...

Apparently that adage, "You can't teach an old dog new tricks" is false. You see, no matter how many years the internet has provided online shopping, I have refused to Christmas shop from my couch in the comfort of my pjs. It seemed.....Well, just plain wrong . To REALLY enjoy the holidays properly, you must:  Look for a parking space at the mall for  at least 25 minutes, Fight the crowds, Stand in ridiculously long lines at the checkout. Deal with less-than-jolly cashiers, Carry your weight in bags when you depart, Search for your car completely frazzled, exhausted, and starving, While visions of sugar cookies dance on your hips , I mean... lips. Anyone feel me? Sooooo, for some strange reason that I will blame on inhaling fox urine, I decided to forgo the aforementioned festivities. Today, I MADE IT MY MISSION to complete almost my entire shopping list.... {GASP} Online. In my PJs. With a cuppa joe in one hand. And a wicked right click wi...

Since my camera is STILL broken (sniff) I thought I would show some of the pictures from our photo shoot  for our Christmas card. These are the ones I love, but didn't make the card this year. Go ahead and thank me now for not making you read my ramblings and musings. Can't make any promises about my next post, so enjoy it while you can. Ha!

Things the Lord has shown me through Sofia: From the foundations of the world – God has uniquely designed each individual person in our family. It was God’s plan to bless us with two awesome boys and four beautiful girls to complete our family. Change is a good thing – All that Sofia knew for 26 months changed in an instant when they placed her in her mother’s loving arms. She has blossomed in her new world! Trust – Sofia has learned that her mommy and daddy know what is best for her and they will keep her safe and provide for all her needs. That is how our heavenly Father is with us. Height is a useless measurement . She falls into the 1 percentile for her age but she makes up for it in spunk! Persistency – Sofia can hold out for what she wants for a very long time. God be glorified in our stubbornness! She can EASILY wait perfectly still for 20 minutes to let her nail polish dry. She hates smudges! Twins – that “twin thing” is real! Ten...

For God, and His Word that are always true. Even when I doubt. And for His great love and mercy for us every. single. day. Thankful. For people who make meals. And come to lend a helping hand. And take time out of their busy days, to call and check on us. Thankful. For friends who listen to me rant and cry. And rant and cry with me. And those who know when to talk about everything else. Or don't know what to say, but are always, always there. Thankful. For family who love us. Who support and encourage us. Who would drop anything at a moment's notice, and who are behind us all the way. Thankful. For prayers. From literally all over. From those who know us, And those we've never met. Who love our girl from near, and far. Thankful. For those who text, or email, or call, To uplift, encourage and love us, when we cannot fathom another step. Thankful . For ipads, and pillows, and snuggly blankets, and books, and balloons, and gi...

FINALLY!!! Celia got some good news. We NEEDED some right about now. She has been granted a wish from the "Make a Wish" Foundation. Now we have to decide for her what a special wish might be. Initially, we thought that Disney would be a great option because the Give the Kids the World Village caters to special needs kiddos and their families, but we have a timeshare there and will go regularly. SO although it would be a different experience than one we could provide for her, I don't think it would make THAT MUCH of a difference to her either way. We are now thinking she might enjoy a backyard play area that she can get around in her go-go in and be able to interact with her sisters. A deck-like area with play equipment that she could use, and a house that would be big enough for a wheelchair or her go-go to make it inside. Hmmmmm...... We just have this HUGE responsibility of deciding for her, but it's HER WISH , so we want it to be exactly what she would...

- Saturday we hiked up a mountain... during another feed. It was super-fun, the fall foliage was gorgeous, and we got some fun time with the marrieds who helped with the biggies and the babies. LOVE. THAT. - Oh, and speaking of feeds, it's all we plan our lives around these days, so you'll hear it a lot. (You've been forewarned.) - We also went to Cost-co. ON A SATURDAY. It's against everything I believe in, but it was close to the mountain we hiked, so we decided to throw caution to the wind. On the way home, Celia had her first car-feed. Let's just say that it took both Greg and I several minutes to get her out, the backpack with the pump out while still attached to her, and the tubes untangled, and it wasn't pretty. - Our oldest son thoughtfully ordered dinner and arranged for his brother to deliver it to us on Friday. Thai and sushi.... YUM! And he knows that although I love sushi, it has to be COOKED. And not in the same container as RAW stuff, eve...

We decided if we EVER want to leave the house oh, in the next year or so, we better go ahead and give it a dry run. During a feed. Yes, we are insane, thank you for asking. We decided to go to Tr@der Joes, because who isn't happy there? Little shopping carts for little girls to push, and Mommy just quivers with excitement at all the organic stuff. I don't get out much obviously. We get on the road and she starts fussing. Daddy: "I think she's in pain." Mommy: "No, I am pretty sure she doesn't like the tv show we put on. She likes choices" She is a girl after all. HA! More fussing. Since we aren't sure what's causing the crying, we make a detour to my second favorite place which is much closer to home. T@rget, here we come. After a ridiculously LONG TIME untangling her from her tubing, and getting her situated in the stroller (while her 3 sweet sisters patiently wait) we triumphantly enter T@rget. Except she's reall...

My sweet hubby sent me this list of things God has shown him through both twins. It is just too good not to post. This is the first of two posts from their sweet and amazing Daddy that one day I hope they read and realize how much we are constantly blessed with being their parents. Thinking back over a year with the twins, The Lord has shown me a few things. First, here are a few things I have learned from Celia: Patience – Celia is never in a hurry and is typically last for almost everything. Contentment – Celia does not complain about her circumstances. She is happy wherever she is or whatever she is doing. Enjoy simple things – Snuggling with Mommy or Daddy; can it get any better? Relinquish control –  Celia cannot control anything in her life. She is fed, changed, placed in her chair, placed on the floor, taken inside or outside all when someone else decides is best. She cannot even decide which toy to play with or when to eat. Humility –...