Archive for November, 2012

Roland took his first steps! HE IS WALKING!!!

Monday, November 26th, 2012

On November 15th, 2012 Roland took his first steps! I had the worst cold of my life and had lost my voice so all the cheering him on just came out air. :) Click here to see his very first ever steps!!!

And here’s a video of his longest walking stretch that day. He falls at the end, but after the initial fussing he was begging to get up and “wok” again. :) I just wanted to take more medicine and go to bed, but Rolly pleaded for me to do more walking with him. He couldn’t turn since his little make-shift walker lacked caster wheels so after he ran into something he’d whine for me to turn him around.

So proud of himself!

Love his little monkey tushy. :)

For weight we put a bag of quinoa in the seat that we drew a face on and called “Keenwah baby.”

Although he was falling a lot, Roland was taking more and more steps! But then two days before Thanksgiving he got a cast change which left him hurting and miserable. He couldn’t weight-bear, stand or even crawl. Poor guy has to have a new transition every two weeks as his body changes slightly through casting and he has to relearn how to do everything all over again.

Before

After

But check out the progress we’re making! Less than a month left of upper body casts! Look how bendy those arms are!

*Someone* was happier about the trip to the hospital than the other one. She was great and helped Rolly all through the casting process.

Oh and speaking of Laelia, she walked the entire day. I forgot her wheelchair and her walking sticks, but instead of going back for them she begged to walk. She walked from the parking garage to the elevator to the hospital to the casting area to McDonalds and back to the parking garage. (Those who have been to Rady’s know what a huge distance that is!) And she did it all without walking sticks! Just held my hand for some of the rougher terrain. Incredible!

She wanted her hair done up before we left with the bows we won at the auction to bring Igor home from the orphanage. People would compliment her hair and she would say, “And my walking is great too!” :)

Two days after his casting change Roland was feeling much better and started to grab his “walker” and fuss at me to stand him up. Quinoa baby had broken through the material in the toy stroller so we had to make due with a ten pound weight attached to the bars. Eventually he was walking EVEN BETTER than before! Know what helped the most? We got him a walking coach. She works for cookies.

Click here for the video of him learning to walk with Laelia.

Click here for the video of him “racing” Laelia. I no longer hovered as he was no longer falling!

My babies both walk!!!

Take THAT arthrogryposis!

It’s Not Your Fault

Monday, November 26th, 2012

I wrote this for the AMC newsletter a while back. My audience was new moms whose children had just been diagnosed with AMC. The piece is titled, “It’s Not Your Fault.”

 

We tried seven ultrasounds to find out our baby’s gender. Each time we saw a black and white blur curled up into a pretzel. We were never told that our baby had any special needs. We weren’t prepared.

Babies with AMC are born stiff and curled up at birth. Ours was no exception. I just wanted to know if I had a son or daughter–something seven ultrasounds couldn’t tell me. After they pulled my baby from me via C-section I asked again what my baby’s gender was. “I don’t know,” a female voice said and then added in horror, “I can’t pull the legs apart!” The mirror they were holding up for me to see below the curtain got quickly snatched away. I started to get scared. “Why are the legs in the way?” I asked. A blonde woman leaned in close and rubbed my arm. “It’s not your fault.”

It’s not your fault. That was it. That’s not an answer. That’s a puzzle. What’s not my fault? What’s not my fault!

I didn’t see my only child again for five hours.

The first meeting with my daughter was shocking. Not because of her limbs (they had her swaddled), but because she was a tiny human life. The awe of it was overwhelming. She started to cry so I spoke her name. Laelia. She stopped and looked straight up at me. She recognized my voice! The intimacy of it actually frightened me. I immediately felt the weight of being completely responsible for a little someone. And not just any someone, but someone with special needs I didn’t understand.

Blame it on the heavy medication after my C-section, but I could not pronounce the word arthrogryposis correctly for the first three weeks of my daughter’s life. Heck, I had a hard time saying AMC. ACM? The days ahead were filled with physical therapy, fighting with insurance, painful stretching, serial casting and worrying. Not to mention breastfeeding. I found I was afraid of my daughter—afraid to hurt her. I didn’t understand her body and I grieved for the daughter I had hoped to have. This wasn’t supposed to happen. I stayed in this state for the first four months of her life as every trip to the doctor brought more bad news. She was missing the muscles to walk or lift her arms. She would be in a wheelchair for life. She would never walk. Upon hearing this, my cousin told me to start a blog and journal out my feelings. So I did. With a heart full of lead I started my very first post, “I have a physically disabled daughter…”

It has been four years since I have described my daughter in terms of “physically disabled.” It’s funny, but that just isn’t a good definition for this goofy, quick-witted kidlet. These days my blogs are full of life. I write about how Laelia lifts her arms by swinging them, how she walks all over the house in her KAFOs and how she’s the smartest kid in her preschool. That’s not the picture the doctors gave me, but luckily for me I had my AMC family—a group of people who knew this condition and didn’t let me give up.

So would I have chosen to have a child with AMC had I known? Yes. I’d choose this. My daughter is pure joy. Would I do it again? Haha! Absolutely. In fact, we are!

This summer we will be traveling to meet our son. He will be just under two years old. He has arthrogryposis. Arthrogryposis. I say it like a veteran now. Overseas my son has been given no hope of living a normal life. But I know different. I see his little legs and feet in that pretzel position and smile. Someday I’ll blog about what a joy he is. Someday when he’s crying I’ll speak his name. Roland.

And someday during an examination a medical professional will try to get his legs apart and I’ll tell her, “It’s not your fault.”

Raise your Glass foundation

Monday, November 26th, 2012

A.J.’s parents are launching the Raise Your Glass foundation to honor Dr. van Bosse and the work he did to get their son walking. You can read about it here. The following is my contribution.

I get air sick. I just wanted to start with that in case anyone is under any delusion that I enjoy flying 3,000 miles one-way from California to Philadelphia to see one specific doctor. My family lives five minutes away from the hospital that U.S. News ranked #2 in the nation for orthopedics. My daughter, Laelia (LAY-Lee-Uh), was not only correctly diagnosed with arthrogryposis the morning after she was born, but also with the correct type of arthrogryposis, out of more than 400 types. Our pediatrician could not only pronounce arthrogryposis, but upon our first visit he produced a photo of himself and another patient with AMC–a photo affectionately on his desk. After hearing from so many other families I realize our story is rare for how easy we had it. If anyone was blessed with a working knowledge of one of the rarest conditions in the world right from the start, it was us. If we could have had our daughter anywhere in the world, San Diego would have been hand-picked.

Yet doctors gave up hope.

I can’t explain it. Well, it’s true that my daughter did not really move her arms or legs for the first year of her life. She also has extremely low muscle tone that one local doctor described as the lowest muscle tone that he’d ever seen in kids with AMC. Despite hearing that I continued to make appointments and try to get more help for my daughter. I must have been annoying because the head surgeon actually took my shoulders in his hands and told me to accept that my daughter was disabled. Then he left the room without signing the prescription for splints in my hand. It was for knee splints and the doctors were convinced that straightening Laelia’s knees would not allow her to be comfortable in a wheelchair where they predicted she would spend her life. Every doctor’s visit came with a wave of depression as we grieved the loss of hope. The last glimmer of hope to die was when we learned about an arthrogryposis clinic in Seattle from a friend who was willing to pay for us to go there. It was the final nail in the coffin when that orthopedic big wig gave up on our daughter after one visit. He would make the fifth pediatric orthopedic doctor to say, “Nothing to be done. See me in six months.”

We found out about Dr. van Bosse after we had already given up. I hate to admit it. Even when success stories were pouring out of Shriners in Philly, I was still skeptical. It wasn’t until our friend Cheryl and her daughter, Tracey, spoke up about their personal experience with Dr. van Bosse that we agreed to see him.

At this point I felt like an AMC expert. I was familiar with my surgery options, or what little there were. I knew all about splints, walkers, weight-bearing, wheelchairs, casting and stretching. I owned the AMC Atlas textbook. And my daughter had already been through two major surgeries and some tendonotomies before local doctors had told us she was “done.” I felt so certain she had more potential than doctors could see. So we went to Philly.

The trip to Philly was rough. So rough that I was praying the great and powerful doctor was merely just the man behind the curtain.

Instead I got to meet my very first expert in the AMC orthopedic field. I was impressed with a doctor who listens, examines and waits. But I’m not here to write about bedside manner, although I remain super impressed with a doctor who will email me back within 24 hours with answers to my medical questions. Dr. van Bosse introduced us to an entirely different  methodology   So far Laelia had only had soft tissue surgeries. We kept hacking at precious resources my daughter needed to move. Instead Dr. van Bosse introduced us to derotational osteotomies. And unlike the doctor in Seattle who first mentioned them but would only perform that surgery on patients who “deserved” it (his PT said Laelia’s muscles were too weak), Dr. van Bosse left his crystal ball of future predictions at home and focused on the issues at hand. The most important thing was to give her a chance and see what she did with it. And unlike others we’d seen, all surgical suggestions he made were backed up by evidence. I was shown my daughter’s x-rays and then x-rays of the same exact lower body contractures of other anonymous patients before and after the surgeries he was proposing. It wasn’t a “take my word for it” pitch at all. It was a course of treatment over the next few years with known results. Instead of, “Will my daughter walk?” my questions became, “When will my daughter walk?”

Hips before.

Right after surgery.

Hips after.

Knees before.

Knees right after surgery.

Knees now. Perfectly straight and aligned.

My daughter walks. (Now I’m crying as I write this.) Everywhere. Up and down inclines, around the grocery store, all over the house. Without a gait trainer. Without a walker. Without pediatric crutches. And recently she took a few steps without even her leg braces on. Having correct alignment allowed her to exercise and grow muscles in her legs we didn’t even know she had. I can’t begin to describe how her life has improved dramatically since she gained the ability to stand and walk, something she never would have done without Dr. van Bosse. My daughter was almost five when I had my first conversation with her about walking in the street, opening the bathroom door when I’m in there and running with scissors–conversations I was told we would never have. If not for Dr. van Bosse Laelia would be sitting on wide, abducted legs right now.

Doctors should never give up on children. Children are the very definition of potential. Dr. van Bosse is the very definition of excellence in care. And all my parent friends will tell you, he never gives up.

And I joyfully get air sick to see him.

Transitions are hard, but worth it.

Tuesday, November 13th, 2012

I am constantly amazed by how normal our lives are.

What? Stop laughing!

I  concede  that sometimes everything that can go wrong does go wrong. Insurance for one thing has gone wrong lately. We were suppose to be covered, but it had not been activated after my husband’s career change. Then we got the fun of getting denied for a trip to the casting clinic, a trip to the pediatrician, a trip to the ER, a trip to the pharmacy, a wheelchair order that had been in the works for over a month (which is now semi-permanently  stalled), Roland’s walker (we now have to borrow one instead), and a trip to the orthotist for the lift in Laelia’s shoe that allows her to walk. All in the same week. I admit. Those times suck the life out of us. But I think every family has *something* that sucks the life out of them if they let it.

But day to day my kids are active, happy and sweet. Normal. They will squabble like siblings–”don’t touch my crutches! I want that! Noooooo!”–but they also love each other. Last night Laelia was falling asleep before I got her in bed. Roland crawled up to her while I was removing her KAFOs and very gently reached down and gave her a kiss on the cheek. He said “ah uv oo,” which is what he says after he hears, “I love you.” Precious!!! Right after that he grinned and went to pick her nose, but I grabbed him in time. Stinker. ;)

Often if Roland is having a hard time sleeping in his crib Laelia will walk up to the bars and stick her face between them to make faces at him. I hear him giggling and I pretend I don’t know anyone’s up. ;)  Laelia has also taken it upon herself to be Roland’s personal English tutor. So far she has taught him “up,” “good boy,” “good girl,” “thank you” and “you’re welcome.” She encourages him a lot while he parrots the noises back to her. I love seeing him grin when she praises him.

So I guess I want to say that life is good and we are happy.

It’s been three months since Roland has been home. The transition has not always been easy, as adding a child to a family is often a difficult transition no matter who you are. There was a time when I was so worried about Roland’s transition from orphan to son, especially when I would see behaviors that made no sense to me. One of the first weeks he was home Laelia won an award at school for citizenship. (Oh I shutter to remember this story.) I had to go to the school to see her accept it in the morning. I had to bring Roland. The little guy had a hard time in an environment of children. I’m sure his institutional spidey senses were going crazy. I don’t know what orphanage connections he was making, but I do know he threw the biggest screaming fit through the first two children receiving their awards. He was bright red and screamed so much that he threw up a bit on his shirt. I had to leave the room as the other parents had brought video cameras and I was ruining their moment. Laelia was the third and final child and the teacher came to get us from outside and told me that we could just let Roland scream and she would talk loudly, but it was important I be there. Laelia had just been through a lot of transitions herself and was not reacting well to Roland’s screeches. She refused to go to the circle. (Did I mention she was getting this award for following the rules?) She simply said no and then planted her stubborn little feet. With Roland arching his back and swinging his arms and legs wildly I knelt down by my daughter and in my sternest voice told Laelia she would go to the circle (then lowering my voice to a dangerous level added) right. this. minute. She complied. Roland swung an arm around and clocked me in the face, my glasses went flying. Thankfully at this point he was only in two casts and not all four, so his arms were not the plaster punchers they are now. I had to hold his arms down which caused him to scream like someone was killing him. My ears were ringing. I didn’t know this little one well enough to know what soothed him yet and nothing was working. I got lots of nasty looks from other parents which was the real kicker. I realized that it looked like I had broken my son’s legs (which I got accused of by strangers that week) and now he was throwing a fit because I was a mean mommy. No one would believe the unlikely story that he had a joint condition and had *just* been adopted. I was dying for this dumb award to just be thrown at my child so I could retreat. A parent was still filming (why? shoo!) and Laelia got her award. But she had an attitude and pretended not to hear the adults. So I took her award and told her she could have it back when she’d earned it. One parent blocked my escape and asked if her son and my daughter could take a picture with their awards. Uggggggh. My son was now upside-down in my arms from squirming around and I had my neck craned back to avoid his kicking feet. “Quickly,” I snapped and then waited an eternity for them to finish while my daughter refused to smile. I was red in the face when I finally marched out of that classroom, crumbled award in one hand, screaming boy in the other. But a few steps outside was enough to get Roland to calm down and cling to me. I was so unhappy with him I didn’t even speak when he asked, “Dadoo?” (His way of saying, “Mommy?”) A guy walked past us and stared. I just thought,  What?! Ever see a tantrum before!   Then another dad walked by near the school gate and looked straight at his shoes. What?! Am I embarrassing you?!!  Then, I swear, a THIRD guy walked by and this one grinned and chuckled at us. What?! Okay that was a weird reaction. Roland is not even throwing the fit anymore, I mean he’s just sitting in my arms grabbing my shirt…. *gasp*

Yep my son had grabbed the front of my shirt and dragged it down to expose my entire (colorful) bra. I had just flashed every man I had walked past. When I realized this and grabbed my shirt up, Roland began to laugh. Yes laugh. He is lucky he’s cute.

See this memory was floating through my head last Thursday during my parent teacher meeting. Laelia and Roland played happily while the teacher went on and on about how wonderful Laelia was and how good she was doing. Roland didn’t scream once and when his toy would fall out of his hands he would say, “Uh oh,” to his sister who happily got it for him and lectured him to thank her each time. (“Day do!”) Roland seemed so happy and adjusted compared to our first classroom appearance. Now he was with his family and content. Instead of a stranger, I was a comfort to him. And my shirt stayed up to my chin the whole time. :)

I found out last week that my sister and her husband have decided to adopt from the Republic of the Congo. Their son will be an abandoned (most likely starved) little guy. She was on the other end of the phone while I cried that my son wouldn’t stop crying when he got home. She was there when I told her that I had to go out one morning to a doctor’s appointment and my son was now stimming like crazy and wouldn’t make eye contact. And if I was going to scare her away with how hard a transition can be, then maybe getting my son in four casts (plaster punchers) may have done it. :)

But transition is an easy price to pay for a little human person being added to the family. And realistically our eight week transition was not that long. Right now both my kids are enjoying Thanksgiving break and playing together. Roland can pick up his own toys after they are done. They both cleaned their room the other day by themselves! Laelia has been doing more physical feats with Roland around to encourage her (read: chase her around). I’ve seen Laelia “fast walk” (run) without crutches to avoid a rolling Roland bulldozer. Roland has done more physically too, but it’s not like he had much of a chance in an orphanage to begin with. It’s fun to see your son become a well-adjusted typical two year old in the space of a few months. It’s fun because you know it wouldn’t happen if you hadn’t adopted them, so it gives you this proud feeling of accomplishment even though you just provided the environment and your kid did all the work. :)

I can’t describe how happy I am that we adopted. (I literally can’t get computer time enough to talk about all our joy.) I can’t tell you how happy I am that my kids get a cousin from the Congo. Life is full. It is good. Adoption is worth it. Transition is worth it.

 

Worst day ever.

Thursday, November 8th, 2012

My day started out so well. I knew it was going to be hard since Roland was getting four casts changed, but the positive thing (about the only positive thing) about a hard four-limb removal/recasting is that after it’s all over Rolly sleeps like a rock when we get home. It’s like the nap of champions for an otherwise allergic-to-sleep awake zombie child. There’s a lot of emotional energy that he expends during days like this and sleep is healing for him. I was thinking maybe I could watch something on Netflix. Maybe I could even tackle the dishes. It wasn’t going to be a bad day, at least that’s what I told myself.

Roland was awful hyper this particular Tuesday. He was his tornado self. And I wish I could get a forecast for his levels of destruction before planning anything. But alas I had today and only today to go vote and he had to come with me. The polling place was very close by and I carried my son in there. They gave him my “I voted” sticker, which made him so happy. It should have instead read, “I distracted.” Or better yet: “I did karate moves while mommy held me football style and tried to vote with her other hand. Then I almost knocked over the cardboard booth, yelled hello (my new favorite word) to everyone ignoring me and tried to grab mommy’s ballot while loudly saying, ‘daaaaaaaaaaaadoooooooooooooooooo!’ which I’m pretty sure means, ‘Don’t look at that, look at me!’ And then they gave me this sticker! Best voting day ever.”

Then straight from polling place to hospital. It wasn’t until we pulled up to our spot in the loud underground parking garage that Roland got a reality check and calmed down from his happy madness. He wasn’t even singing or kicking when we entered the double doors. He was clinging to me by the time we went back into the clinic rooms. People commented on how good he was being. That’s fear, people.

We hit a snag when entering clinic. My husband had a career change recently (last week) and our insurance is through him. And even though we were suppose to have insurance during the transition, it had not been activated. And they would not remove any of Roland’s casts without payment or insurance. I was not about to lose weeks of ROM due to money so after many phone calls that went nowhere I ended up having to pay out of pocket. It was not cheap, but I couldn’t leave my son in four casts!

As for some good news, Roland is 50 degrees away from straight knees. He has 60 degrees of bend in his right arm and 75ish in his left. (Up from, 5!!!) That means we’re looking at only another month or less of casting his upper body before going into splints and back to daily stretching. His feet also look good. He has a flat left foot and is 20 degrees away from flat in his stubborn right foot. No idea how much longer lower body casting will be. But I’m encouraged!

After the buzzing saw, clean up and recasting was behind us I got a phone call from the school nurse. Laelia had a stye  on her right eye that was going away, but had developed a bad stye on her left eye recently that had just ballooned overnight. We think Halloween makeup didn’t help. Well the left stye had burst during class and I needed to pick her up immediately. I am literally right next to the ER at Children’s and so I ask where I should take her. They tell me the pediatrician. So I go to Laelia’s school, pick her up from the nurse’s office and drive straight to her pediatrician. I am a bit panicked because her eye looks so bad. Eventually a nurse comes out and says, “Yes you definitely have to see the doctor. You don’t have an appointment, but we’ll fit you in.” (I’ll fast forward the story past the waiting drama followed by Laelia needs to go potty drama, followed by poop blow out by Roland and realizing I did not pack wet wipes drama.) All of the sudden the receptionist goes, “Wait it’s saying your insurance is not activated.” I completely forgot. Didn’t the casting clinic work out fine? Oh right I paid out of pocket. I was really not thinking straight. I tried making all the same phone calls to no avail. I asked them to please just see my daughter and I would make payments if I had to.

Well two hours later both her pediatrician and another  pediatrician told us, “Go to the ER. Now.”  So now I’m loading both children up and we’re rushing to the emergency room WHERE I HAD JUST BEEN! (Casting clinic shares its rooms with the ER.) At this point Laelia’s eye had filled with puss and she couldn’t see. As she would put it, “But that’s what my other eye is for! Can we stop for tacos?”

We had one funny moment when I storm into the ER with one kid in a wheelchair and the other in four casts where the guy behind the desk asks, “I need both their names. Was it a car accident?” I’m like, “No, you’re just seeing the cyclops.”

They said they could see her right away so I was starting to relax. Then I hear, “Do you have insurance?” Acccccccccccccc!!! Yes. No. Well it’s the ER so they saw her anyway. The doctor said he thought it looked infected so they got a culture and prescribed an antibiotic and eye drops. But when he cleaned up her eye she started screaming. So he had me finish it up while he went to fill out the prescriptions. So I’m being so very careful but notice my towel is getting pink. Then all of the sudden, just like a horror movie, blood starting gushing from Laelia’s eye. It was like a red flood. Literally. Think the scariest thing you’ve ever seen. Laelia was screaming in pain. Roland was screaming to be louder than Laelia. I had to leave them both screaming and run from the room to get someone to help. In my mind I thought for sure my daughter would go blind and my son would be traumatized. (He is still hurting with four newly placed casts and no nap.) Doctors rush in.

It turns out that she may have had multiple styes and one popped at school while the deeper one on the inside of her eyelid popped and bled after I tried to clean it. So great. My daughter’s eye just decided to explode today… twice.

 

A little puffy and crusty three days earlier.

But she’s still happy. (There’s one on her right eye too.)

One day later.

But she’s still happy.

It pops at school into her eyeball.

Picked her up from school like this. (Note the smile. Really?)

At the pediatrician.

Partially blind in that eye at this point.

Home from the ER.

Can I have ice cream?

Roland threw  hysterics  off and on from that point forward. Through the horror, through the waiting, through the check out and anytime I wasn’t looking at him. He wanted his nap, darn it. Then he quieted down for a moment, looked up at me and threw up. Everywhere.

WHAT HAPPENED TO MY NAP?!!!!!!

Followed by *puuuuuuuuuuuuuuuke*

We were a wreck by the time I got to the check out desk. At this point I was upset about not having insurance… or wet wipes. They were telling me a ton of information about how to pay for this ER visit that I only half heard. Both my kids were crying and I still had to get Laelia’s antibiotics. I just kept nodding and signing things and then they let me leave.

We walked down the road into the pharmacy. While Roland screamed and knocked things off the display shelves (yeah they loved us) I handed the lady my prescription paperwork and it wasn’t, I swear, until she asked for my insurance card that I remembered, oh yeah, I DON’T HAVE INSURANCE! Accccccccccccccccc!!! After some back and forth, I ended up paying out of pocket for the meds since we needed them immediately.

I was walking back to my car (on the other side of the world) when Roland’s front stroller wheels decided to stop making any turns. So I was pushing him while dragging Laelia’s wheelchair behind me with her facing backwards, then having to stop and readjust every two feet. Thankfully a good Samaritan saw me and, even though we were going the opposite direction and well out of her way, she grabbed Laelia’s wheelchair and started small talk with her while following me to where they stab and rob people… I mean the RMDH parking garage. Specifically into the farthest, darkest corner of it where I parked when it was daylight and now was pitch black. The lady was nice enough to help without asking why my son was in four casts or my daughter had blood all over her face. Smart woman.

I had been calling my husband all day, but I had his other number to his other work phone that he had in his bag. He wasn’t able to find out we were in the ER for several hours. In fact it wasn’t until the very end of the day that he was able to come help. He made it to the ER just as we were leaving! We headed in two directions so Charley could get the tacos and I could get the ice cream for the little cyclops princess. Charley then fed the kids and gave me a little break to check email. The first email I read was letting me know the child (orphan) we had been advocating for this month had died.

I just burst into tears. My problems are so small. My insurance issues so petty. My children are happy and healthy most of the time. They are loved. This little seven, no, eight week old baby girl died alone and unloved. Three families had been interested in her. Friends had offered to blog about her and were working on their posts. And just like that. Gone. I haven’t gotten any details, but last I heard she had some fluid in her lungs from not being upright (read: held) enough. She was left in a hospital, but not getting the care she needed.

There was a moment where Laelia’s eye looked super gross that I considered for only a moment just going home and doing my best to take care of her there. It was because of my insurance situation. She had an infection and her stye would have burst at home. That would have been awful. And Laelia is the most precious thing in the world to me. But my insurance situation almost kept her from getting the care she needed. For those who don’t have insurance, who can’t afford it, who live without it, well, I just can’t imagine what they face.

Roland screamed off and on until well past midnight. He turned out to be dehydrated from throwing up, but he was able to keep down some water once I got him to drink it slowly. We were up anyway watching the elections. “President Awana” (Laelia’s words) won the election. And I have to say that I was relieved that Obamacare won’t be repealed. It will save lives. It will be there for NICU babies. It will be there for those with preexisting conditions like my two. I know Obamacare is unpopular to some people, but right now I want to give every penny I have to helping those without health insurance. I want to raise funds for those without it, especially those at risk like children or the elderly. I’m heartbroken for these people. I see this need with new eyes. But at least now the Affordable Health Care Act won’t be repealed and more people will get the access to health care that I have enjoyed most of my  privileged  life. Sorry this didn’t start out to be some political talking point. Definitely with elections having ended I’m not trying to make people think or vote a certain way. But I’ve heard a lot of dumb things during this election (which seemed even more petty as we sat in the hospital), and a few people didn’t stop to think about the hurting human beings they were referring to before spitting out their views on who deserves what. Bottom line: People in different situations than me deserve food and health care. I am not better than them.

It’s now Thursday night. Laelia swallowed a whole pill in a spoonful of apple  sauce   I’m pretty proud of her. She even held still for her eye drops. Roland threw up his peas and it makes me feel a little better thinking it might be a stomach bug and not stress from what we went through a couple days ago. We ended the night by lighting the candles in the fireplace and singing songs before bed. Laelia knew all the words. Roland… didn’t, but that did not stop him from making noises we’ll call singing. ;) We prayed for the orphans still waiting for families. Especially Aubrey, Elizaveta and Raymond. Then I tucked my children who I’m so so so thankful for into bed. They are gifts to me. I’d go through a hundred days like Tuesday as long as I get to be their mommy.

Halloween

Thursday, November 1st, 2012

Carving. (Roland is banished to the high chair after repeated attempts to play with sharp knives.)

Laelia: “Mama, why is my pumpkin sick?”

Roland’s pumpkin in a diaper

The kids’ pumpkins greeting visitors.

“Laelia are you a good witch or evil witch?” asked almost everyone.

Laelia: “Evil.”

Meow

Witch Laelia’s black cat

“Come back here! You’re my cat!”

Summary of futile picture taking: “Roland come back here! Roland pose with your sister! Roland can you hold still? Where’s Roland?”

Norbert the Dragon in University Heights

Laelia’s reason for meeting dragon: “We can both fly. We should be friends.”

Right before meeting dragon: “Why is he so… big. *gulp*”

During meeting with dragon: “…”

After meeting dragon: “That’s my friend the dragon.”

Washing the orange out!

Washing the kitty paint off.

Roland is harder to bathe. :)

Laelia’s summary of the night: “Apparently I’m very cute and everybody seems to like me.”

Roland’s summary of the night: “Meooooooow!”

Happy Halloween!