On the way to the hospital.

Everybody is excited except for the one who missed breakfast and lunch.

Wants food, sick of waiting.

Laughing and being distracted.

Gowned.

Right after surgery.

Listening to the nurse.. well some of us.

Not happy.

Hospital bed/crib… something about this was just disturbing.

She got this story 16 times in a row.

Oxygen and IV and more distractions.

At home!!! And the best she’s looked in the last 24 hours!

Only one pin in her foot and look how straight the bones look!

Okay, wow. Sorry I wasn’t able to give an update sooner. They turned my phone off at one point to let her sleep and I see I missed some calls and texts. I was pretty distracted. Laelia’s surgery went well. They did her “good” side first so surgery was easier. She only had three toes worked on rather than all five (little toes were “good enough” they said), and only one pin instead of several. Those are things they don’t determine until they’re in there getting their hands dirty, but we’re glad it went well.

Laelia had high anxiety for the first nine hours afterwards which the nurse said was probably because she was non-verbal and stressed out. She doesn’t know why she’s in pain or what will hurt her. Her oxygen levels were “too low” so they have her on oxygen, but she didn’t know if the tank would hurt her. Her pulse is constantly shooting between 160 and 180 (and it should be between 100-120).  Everyone has asked if she had a cold or some other illness before surgery! No!!! What??! Her breathing is raspy, but I swear she was 100% perfect before surgery. She also freaks out if you break physical contact. But I guess the surgery went well and these are some post surgery hurdles that many parents deal with. I think it will be better if we can take her home. Since she’s not eating or drinking yet, they won’t release her until she can take oral medicine.

Sorry visiting didn’t work out very well. She just wasn’t doing well. We’re letting her rest now.

I’m just picking up some things at home and rushing back. So I’ll have to tell you all about how I almost killed some nurses later. Thanks for the prayers and positive thoughts our way! We appreciate it! I honestly don’t know if we can do this again in two weeks. We may have to put it off. Keep the prayers coming!

~Alexis

PS: Charley called and said she took some apple sauce, so that’s a good thing. We’ll try the oral medications in a few hours!

Thank you Adam and Chelsea for coming over with dinner and dessert and stuff to bring to the hospital! And thanks, Adam, for feeding Laelia her broccoli even though it smelled bad. It was great to be so distracted!

Dad and Christina showed up with (and this is a rough estimate) about 300,000 toys and stuffed animals. I guess after Grandpa passed away, Grandma gave a lot of his stuff to Dad, and Dad had to make room for it by cleaning out my old room. So he came over with several bags of treasures from my childhood. They’ve been good and distracting. At one point with everybody laughing and talking, I forgot that my stomach was in knots until I tried to eat something else.

Laelia got her new splints this morning and went to bed with them tonight. She’s looking spiffy. I think she thinks it’s her birthday or something. Lots of family and friends and toys and late bedtimes. She even got some pizza, mac and cheese and crackers for dinner. I figure it balances out since she doesn’t get any food tomorrow.

Tomorrow I’m going to cut her fingernails and bathe her again. We’ll take turns eating breakfast out-of-sight upstairs. Then we’ll load her in a car around 10:45 AM and head over. I want to remember to take before pictures. I probably should pack a bag tonight, but I’m so tired and out of it. Still waiting for my sister’s flight to arrive. Hmmm… I may not make it. God, protect my baby girl. I just feel so sick to my stomach. Maybe I’ll just sleep. ZZZZZzzzzzzzzzzzzz.

Dear Potential Visitors of Laelia,

Okay so we found out today via phone that Children’s Hospital is not allowing visitors (besides Charley and me) in the waiting room due to, get this: Swine Flu!!! Of all the BS! So now my family can’t comfort and distract me??! It’s so stupid! Also I can’t see my baby until after she wakes up! So they’re letting the tiny baby who’s not yet two-years old wake up in a strange room without her Mommy?! STUPID!!!  

This whole thing makes me sick. I’m going to try to be nice to the nurses tomorrow while at the same time trying to weasel out of all their stupid rules.

So I guess Laelia will be on the 3rd floor of the orthopedic building like I said before, but that’s just to check in. Then she’ll be in a different place (they’ll tell us where when we get there) for surgery, then a different other place for recovery, then a different different other place for long-term recovery. Sooooo… yeah. I’m guessing she’ll be all done around 6:00PM and we may get moved to long-term recovery after that, and then maybe visitors can come then?

I’ll try to keep people updated as best I can tomorrow without having any technology on me besides a phone.

Well, it’s almost six in the morning and I’m going crazy. I left for work early since I didn’t have to be at Laelia’s splinting appointment this morning at OT. I can’t believe her surgery is tomorrow! But it’s not just one big event that she needs to “get through,” it’s several hospital visits, two hospital stays/surgeries and months of pain management. It’s like knowing you are going to have the stomach flu for three months. You’d want to get through it, but you wouldn’t want to start that process either. I got delirious yesterday at the thought of canceling her surgery. I daydreamed about actually announcing that it was off. But then I would just worry like this another time, and I’m already sick of worrying. I feel like I have three fists punching me in my stomach, in my chest and in my throat. They’re making me sick.

When we were going to get Laelia serial casting back in the day, I remember one time while waiting for our turn there was a little six-year old girl in a lower body cast. She had been in an accident and needed surgery. Now she was all healed from surgery and getting her casts off. She just kept crying and crying that it hurt so bad. She couldn’t move. Her whole body was rigid and her face was distorted with pain.  So after all the heartache of surgery and recovery and casts and general awfulness, it wasn’t over for her. Laelia is scheduled to get her casts off before Christmas, but that doesn’t mean her recovery will be over. That doesn’t mean our nightmare will be over. I just have to get through this year!

I cried hard last night thinking about if she didn’t come out of surgery. How I would regret not canceling it. I thought of all the things I would miss. Charley and I talked about her chubby grin we love so much. We don’t know how we would go on without her. And although I allowed myself to grieve that possibility, I knew I couldn’t think about it for long. The whole thing is just so scary for me. I wonder if other parents would feel this way.

It’s hard to enjoy her. When she smiles at me it breaks my heart. I wonder if this is the last time she’ll smile at me. I cried through feeding her dinner last night until Charley came home. It’s awful.

Well I’d better start my day. I’m working today until my family gets in town.

That’s another thing. I’ve been worried that I planned my life poorly by thinking long term. Maybe I should have been thinking short term. I go to a job. I send Laelia off to school (and to other new experiences). I go to the gym… Maybe I should have been a stay-at-home mom who focused on cramming several years worth of memories into just under two years of being with Laelia. If she doesn’t wake up I’ll have that regret. But if she does pull through this fine, which is, um, definitely the much more likely outcome, then of course I did the right thing by thinking long term. Actually I may have several years of memories already. I have a gajillion photos.

I’m just making myself crazy. And since I like to blog, now you all know I’m nuts.

Laelia’s second day of school went really well. She is in great spirits after school, and her teacher sent me pictures of everything she did today along with her artwork. I guess they strapped her into a chair and handed her paints. Those are brave people.

The school bus dropped her off at Ryan and Lauren’s today. I’ve been calling it “Roarin and Lion’s” in my sleep-deprived, dislexic state. Sometimes when I do that, Laelia says, “Rawr!!!” Laelia didn’t want to leave Lauren’s and I had to convince her that she had separation anxiety and missed her mommy and just wanted to go home. Nothing doing. I guess I’m projecting my own feelings. Darn it.

Oh and I forgot to put this picture up. This is after her first day of school last Thursday. I think the first day was more overwhelming than the second. She was a little zombie afterwards. Today she is totally fine and really playful.

She’ll have to readjust when she goes back to school in six weeks. Poor darling!

I forgot to post about Laelia’s newest accomplishment! She can now say, “please!” Although is sounds more like “peeees.” Here’s a video of her meeting baby Penelope, and you can hear a faint “pees” when she wanted to see the baby.

It’s so great! Now any tantrum can be stopped cold. All I have to do is respond, “Laelia, what do you say?” And she thinks about it and then, all teary-eyed, says ”pees.” And then the babygirl gets whatever the babygirl wants! It’s that adorable! Sometimes when we’re suppose to be learning how to say new words (like “book” or “spin”) she’ll give up and try a cute, hesitant “pees” on me to see what happens. She’s quick, that one.

One day last week when I was home from work we sat down with crackers and worked on learning “please.” She screamed ”cak-er” half the day, but by the time Charley got home from work, she performed her “please” perfectly.

Needless to say she’s had a LOT of crackers in the past week.

Worst nightmare ever: Your child had a successful surgery, but never woke up from it. … I want to stop having those!

Once again, her first surgery (which we now know will be for her right side) will be September 16th. In. Three. Days. (!!!) Her second surgery for her  left side will be October 1st. Then of course we’ll be making several trips to the hospital in the following months to change casts, get pins removed, get check-ups, etc. We may end up going into the hospital a lot in the coming months.

Oh and our insurance may have to change which is stressful, but we’re handling it. We have Charley’s right now, and changing to mine will cost us a lot more so that’s out. Bleh. More on that later. Um, and I’m recovering from being ill, which is not helping things. (It’s not contagious so we’re not worried about infecting Laelia before surgery.) But I did go to the doctor last Wednesday and am taking it easy and riding it out. I passed out yesterday right before my husband’s big Beatles Rock Band party, but then just relaxed with friends and enjoyed the rest of it.  I’m learning to take it easy when I’d prefer stressing and worrying.

We have now received all our paperwork for the surgeries, including pre-procedure instructions. When reading through the pages, Charley and I were doing okay–even when they mentioned that we can’t feed her (something she won’t understand) the day of the surgery. But we were okay. Then they had to go and list the items to bring with us to the hospital. We read the first item–a favorite toy or stuffed animal–and both lost it.  We know just what to bring though: Mr. Bear.

They also said to “remove child’s makeup, nail polish and jewelry” prior to surgery. We both scoffed at our two-year old in makeup… and then realized that she has earrings.

We found out a lot more about this surgery at Friday’s appointment, but I’ve been unable to write about it until now since I’ve been ill, and we’ve been so busy besides! But for those of you who asked when I didn’t have specifics, here’s my attempt at specifics.

(Oh and just a quick aside… after meeting with the surgeon, we found out two things that are different than what we thought before–things we may have shared with everyone. The first thing is that the hip work they’re doing won’t fix her crouch (standing position) problem like I thought it would, nor straighten her out. It will help, and also pave the way for future surgeries, but won’t fix things. That’s hard because that knowledge was something we were comforting ourselves with and we were mistaken. But, like I said, it will help, and it is necessary to do now. The second thing is that her pain and recovery are going to be a lot worse than we first thought. Our only other surgery experience up until this point was those two tendon releases that were done to her feet. Click here to read a sleep-deprived account of that experience from December 17th, 2007.  This will be much worse. She won’t be able to go to school or PT or OT or do much of anything for a while. So not great news, but good to be prepared.)

Surgery specifics:

Her hips/legs: They will increase ROM (range of motion) by cutting the IT band that runs down the leg in two places–by her hip and again closer to her knee. They may also cut away soft tissue in her hips. (This won’t entirely eliminate her crouch, but it will help.) And she’ll have some scars in the shape of lines running down her legs in those two places on both legs.

Her feet: They will loosen the heel cord, scrap out extra tissue in her heels and also manipulate the soft tissue around the bones of her feet to rotate them out and allow the bones to have proper placement in the foot. For example, her ankle bone will be in her actual ankle after surgery.  Then they will put pins in her feet that will get removed a month later to hold everything in place. She will have pretty big scars along her feet that wrap around her heel.

Her toes: All ten toes are getting tendon releases. (Where they cut/nick the tendons to lengthen them.) Goodbye curly toes? Well depends on how much tissue she has to work with after surgery. They will get more curled after the surgeon works on the feet, so I don’t know what they’ll come out like. She will have a scar on the underside (near the base) of each toe.

Her knees:We talked about this and the surgeon really doesn’t want to touch her knees at this time. So we’re leaving them alone. (It may look like she has already had surgery on them, even fooled her pediatrician, but those dimples are a side effect of the arthrogryposis where the tissue bonded to the bone.) She can’t straighten out her legs because of the joint contractures in her knees right now, and after two years of stretching them, I don’t think she will without intervention. But when she was little the surgeon told us he didn’t think she’ll ever stand or walk  (yeah, thanks) so he didn’t want to touch her knees since they are in a perfect bent position for sitting in a wheelchair. But he did say on Friday that he would  consider  doing surgery on the knees in the future depending on if she could stand or if it would greatly help her. He just doubted he would have to.  Come on, Laelia, let’s make him!

And we will have a biopsy taken at the time of surgery too. This will leave another scar, um, or two? I can’t remember if she gets it in more than one place since her EMG was in FOUR places. This biopsy is something they wanted to do back in July of 2008 after they ran that awful EMG test (where they stuck her four times with a huge needle and ran electric currents through her) that showed she had extremely weak muscle and her nerves may be damaged. The test called for a biopsy back then, but since biopsies are extremely painful it was suggested we do it the next time we have surgery so she’ll be unconscious.

As far as casts, the surgeon told us that maybe instead of a full lower body cast, he may do waist high, or I should say, thigh-high with a wrap around the waist instead. We’ll see what he does. (He said he’ll figure it out as he’s doing it.)  She will be able to fit in a carseat and will be able to have a diaper change if you can picture it. It just won’t be easy since the legs will be bent at 90 degrees to anchor the casts.

The surgery will be at Children’s Hospital (3030 Children’s Way) on the 3rd floor of the orthopedic building. It starts at 1pm and I’m not sure exactly how many hours it is, maybe three. I (Queen Mama, whom the rules should not apply to) am only allowed to see her after she wakes up from surgery. She is suppose to wake up around one hour after the surgery is over. I’ve been having nightmares every night that she doesn’t wake up. Then other nightmares that she wakes up and no one is around and she’s scared. At least my family will be there. If anyone else wants to visit just text or email me. I’m not sure if she’ll be in the same place for recovery as surgery so I’m not sure where exactly we’ll be. Something to check on. Then we should leave the next day September 17th, but I don’t know what time. I guess it all depends on how she’s doing.

So, yeah, there’s all the big surgery information I can think of. I feel like I’m forgetting things. We’re just trying to get through this. Laelia is the most precious thing in the world, and I just keep saying that like it changes the fact that she needs surgery. It’s my mantra: She’s the most precious thing!

For those of you who don’t know, I’m doing a walk to benefit brain cancer research. The Brain Tumor Walk is going to be Sept 26th. (Between Laelia’s surgery dates… we’ll see how that goes.) I lost an aunt to this and know friends and family and family of friends who have suffered this. It’s a great cause. Laelia may join us if she’s feeling 100% or close to it. She enjoyed our CF walk.

Our team is Walking In Tom’s Shoes. Dana (Tom’s daughter) works next door to us. I heard today that Tom isn’t doing well. Originally he was going to walk with us, but now that may not happen. Actually Hospice has been called in, and things look bleak.

If you were interested in donating to our team, you can click here. My name is at the bottom of the list. Oh, and we’re winning.

First Day of School

Leave it to a man to only get ONE picture of his kid on the first day of school! I went to work today while Charley stayed behind to put Laelia on the school bus before heading off to work himself. (I only got four frantic phone calls at work from my dear husband asking where to find her backpack, a safety pin or other special instructions.)  Then he took his lunch break to pick her up while I raced home to take over so he could go back to work. Thankfully for the next school day (Monday), the bus can drop her off with our friends (Ryan and Lauren) so we won’t have to do this dance again.

The classroom has both typical and special needs kids. The typical kids are to act as models. Her teacher told us today that they will be working extra hard to help Laelia learn how to use a fork, drink from a cup and, of course, work on her language skills. They want her to succeed! Laelia had a nurse there (who has come to our apartment before to personally check on Lali), her own personal teacher helping only her (for the first day only), as well as the classroom teacher. Talk about spoiled! We are very blessed with all the care we’re receiving! It put our minds at ease today.

According to her teacher she did very well and didn’t cry once. I, on the other hand, raced home after a very distracted day at work, ran to the door, lost my dumb shoe in the process, ran inside, grabbed my baby and then cried my eyes out for over an hour. Okay, wow, even typing it makes me embarrassed. Charley brought me a tissue box, and Laelia pulled three tissues out and wiped my eyes! I tried to take the tissues and do it myself but she would yell, “Doh!” (her word for “no”) and do it for me. So there was nothing for me to do but lie there and get comforted. It was so precious!

Anyway, bleh. I think I’m just realizing that her surgery is in six days. (I remember it comes six days after her first day of school.) It’s coming so fast! I was so worried about my baby today, but everything was fine. She came home looking shell shocked and then ten minutes later was the most hyper thing you ever saw in your life. Another first is behind us!

Here’s a random picture of the school bus. Charley took one picture of the baby and about six of the school bus. *sigh*