Archive for November, 2011

Pediatric Crutches

Sunday, November 27th, 2011

Last night we tried out Ryan’s walking sticks. Remember Ryan? Laelia’s true love?

Yeah that’s them together. Awwwwwwwww.

Anyway,  she did really well! I mean she  just started really  taking a few small  steps in a walker  this month  so these crutches  are major league for her.

Getting up is hard.

She fell back on me a lot.

She doesn’t know about this.

I don’t even know what she’s doing here. ;)

Walking rock star!!!

Here’s a long video of her doing it for the first time if I remember correctly. Here’s another shorter video of her second or third attempt. I was just thrilled with the fact that she tried them and didn’t get scared! Ever since we got her KAFOs she’s been a little afraid of heights. “Heights” being the whole three feet from  her nose  to the ground. :)  So I’m thrilled  Laelia was willing to  even stand up with those wobbly things. I think falling practice in PT and doing the parallel bars has  really helped her overcome her fear.  I went online that night after we got home  and ordered her some  crutches of  her own. (I got some good advice to not wait on  insurance like we have been.)  They should arrive Thursday! I’m so excited! Early Christmas presents! And Laelia is  excited too! She doesn’t treat walking  like other physical therapy excercises, but  revels in the  independence. Her doctor (van Bosse) commented in an email after seeing her YouTube videos, “For her, learning to walk isn’t a chore, it’s a passion.”

When I asked her what color she wanted her crutches to be she was so impatient, “Green! Or pink! Or white! Just buy them!” Ryan’s were blue, do you want blue too? “Yes. Or black. Or purple!!!” How about princess purple? “Yes!  Are we buying them now?” :)

Taking steps since August 31st, 2011!

 

Knee surgery is… soon

Sunday, November 27th, 2011

Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated.  It’s now  February 1st with a follow up in  early March.

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. :)) But because she’s now at less than 40 degrees of flextion  in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many)  releases  and then two  eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got  her  hip pins out and now  she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn  24/7 for a few weeks after that. There will be hard daily therapy in there  too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April  she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next  (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around  her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again.  Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away,  Laelia tells  a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s  pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream. :)

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. :) But after  Laelia voiced her preference loud and clear we have decided not  to give her sleepy juice for her  next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. :) But without it Laelia may  be  terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So  Laelia asked me in a very mature way  not to have to do it again. She  explained how brave she is now after the blood pressure ordeal.  I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy  can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses.  (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but  it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!

 

 

 

Being awesome

Wednesday, November 23rd, 2011

Walking in a walker!

Rolling on a ball!

Beating us at cards.

She knows how to play Go Fish and Uno now!

Spelling her own name and writing it herself!

Playing the “geetar” on her shirt while Davie plays the real one.

Sad party! Laelia evokes all sorts of emotions in the menfolk. :)

Spying on the adults. :)

Reaching her face!

Did I mention that one doctor said that she would never reach her own face?

Hey doctor!  You think that shell got on her nose by magic?!

Mommy even cuts up her sandwiches. Life is good. :)

Disneyland after every surgery

Wednesday, November 23rd, 2011

DISNEYLAND!!! Oh boy oh boy oh boy!

Hanging out with Ileana!

Ileana gave Lali this little tiara. :)

Being a goof. :)

Next in line. “I have my feather! Ready to fly now!”

Too short. ;)

Trying on  her glasses for the new Star Wars ride, but she  wasn’t tall enough (by three inches). So her nice parents went without her (taking turns). :) Mama ended up being the Rebel Spy! :-D

That hand over the face (meaning she doesn’t want anything else to eat) was hard to do! She’s having to claw her own face to keep it on there. Funny thing.

It was training day at Disneyland. Handwritten note at top says, “It’s OK. Trust me.” (To let Laelia go through the back of a line without a power chair.)

Lali and Daddy. Awwwwwww.

 

AMC Awareness

Saturday, November 12th, 2011

 

One of my AMC mommy friends found this  video  online the other day. It looks like a video for occupational therapists to get an overview of arthrogryposis.  That’s awesome! When I was watching it I spotted  four pictures that were very familiar. They were familiar because I took them. Two are of my daughter, one has my daughter in it but it’s hard to see her, and the last one is of her AFO (and my husband’s left butt cheek). One of those pictures even shows my friend,  Chelsea, doing Laelia’s hip stretches.

Google is credited for all the pictures. I guess my name is Google. :)

I actually love the video. I was thrilled to see my little girl in it, as well as a few of her friends.  I think more videos like this should be made available. I have given permission to a few people to use my daughter’s image for OT or PT presentations. The Child Development staff at Rady  Children’s Hospital knows they can take pictures now and get permission later. I can’t help it that my daughter is gorgeous (“Gorgeous” is even the nick name her Grandma calls her), and everyone wants to use her picture.

But now  I do  want to be clear: You must ask permission to use my daughter’s image. If it’s for OT or PT-related things, you’ll get it. If it’s for AMC awareness, you’ll get it. If it’s for something silly, you’ll get it. If it’s for a listing of beautiful children, you got it. But if it’s for bullying or supporting an agenda that’s political or religious, you won’t get it.

Okay?

Great. And now I feel compelled to balance out the universe by taking a random picture off the Internet and crediting Google for it. :)

Kitten with arthrogryposis.

Picture by Google. Duh. :)

 

 

The kid is alright

Saturday, November 12th, 2011

All this  last week I have been adjusting to my new role of housewife, super PTA mom and work-from-home  employee. I’ve been failing miserably! Thus no blogging this week. And before this blog post turns into a whine fest about how much I miss my normal job and boohoo I have to do dishes now, I’ll start talking about Laelia.  :) People  have been  asking about  the kid  to see if she’s doing okay after surgery. She’s doing so well I forget she had surgery last week. This was what she was like right after surgery.

Last  Saturday she was begging to do some weight bearing on her knees. Since physical therapy for the first week is Laelia-directed, I let her do it.  I was still a little  afraid I’d break her, but she was harder on herself than I would have been. With a little   help from Dora the Explorer, Lali logged  over an hour of weight bearing! She’s very independent and nothing will hold her back.

I cringed thinking of her sore hips, but she wanted to hear daddy’s story while holding her toes.

Laelia’s school: Last  Monday  I had a school meeting to determine if Laelia could go back to school. It was going to be with a nurse or health person of some kind. Anyway when we landed in San Diego and I  listened to my messages I had  missed two calls from the school saying that the health person was not available for another week! I thought, “Oh no! No school for a week and me with a new job on Monday!” Well thankfully Sunday night our SEEC (Special Education… something something) coordinator, Sue,  called and after I explained that the surgery went really well and was even technically “an outpatient procedure”  (Laelia didn’t stay at the hospital overnight… and she didn’t really need to stay very long at all) then  Sue suggested I email the school to tell them since I couldn’t call on a Sunday night.  So I emailed the director and hoped for the best. I worried about it all  that night despite trying not to think about it.  The next morning I showed up for school and once people saw Laelia and that she wasn’t in pain or in casts, and she didn’t need any medication of any kind, they let her stay at school that day! When the director said, “Okay sign her in,” my brain didn’t register the words and I was all, “Sign her in for what?”  :) Before  I had been told  she would  definitely  not be allowed  to go back to  school on Monday, but since she was fine they let her! They are saving our big meeting with the health person for after her bigger surgery this spring.

Laelia’s bus: Tuesday morning after the bus didn’t show up I fought with the  bus people  over the phone for 40 minutes. A weird thing happened–they  put me on hold at one point  but without actually putting me on hold. That meant I could hear them dealing with another parent who was very upset. I also could hear them dealing with her in the way they deal with me: with the tough talk, “I’m sorry ma’am, next time call at least two weeks ahead of time… uh huh… well then you should have stood in a more visible spot… uh huh… well it’s our procedure to…” and so forth. When they hung up with that parent I heard them say something like, “Well she’s right. We didn’t do our job and now her job is in jeopardy. I feel for her.” Then they got back on the phone with me!!! And at this point everyone just seemed more human, and I felt more confident in what to say. Long story short, a bus came that morning (very late) for my daughter, and after that her regular bus drivers (whom I adore) have showed up every morning and afternoon since!

Mommy works from home: The great thing about this shift in my job is that I’m able to attend every school meeting. Like Thursday night I went to a Community Advisory Committee  meeting for parents and staff who support  students with disabilities. It was boring as heck, but I ended up meeting people. In fact  I met someone who would be able to assist me when  we return back to school after Laelia’s next surgery!  My goal is to go to EVERY school meeting in any way related to my daughter’s needs or education from now on. It’s really confusing, but I’m learning stuff! Like there’s something called SELPA and it stands for “Special Education… El… Pa.”

One of the perks of working  from home is that I no longer panic when Laelia gets kicked out of school. Like for example  we were told  Thursday that there was no school on Friday for  Veteran’s Day. (We had missed the reminders since we were in Philly.) In my former life that would have meant some mad scrambling and most likely a day of Laelia and Chelsea bonding while Mommy went to work. This time it meant working from home while my daughter was home! That was exciting for all of three minutes. I was looking forward to this new dynamic of working while parenting. I now know this is impossible. Utterly, miserably impossible. I’m never trying it again. It doesn’t work. No good. Nope.

Next time I will parent during the day, and then start work at 3:00 a.m.  when work  can actually get done.

Laelia’s shots: So Laelia was driving me crazy-go-nuts on Friday since I was trying to work from home at my computer while answering her incessant calls every five seconds followed by the whining and crying of an only  child who is being  ignored. Laelia had a doctor’s visit that day, the school reminded me, because even though our lives are surrounded with doctors, they don’t count! Without a physical from a local doctor Laelia would not be allowed to return to school. In the waiting room a nice couple holding a newborn picked my brain about pediatricians while they offered my little angel a mini Hershey bar. She ate half before her name was called.  After her name was called (Lala or Layla or Layloni, they were close) evil Mommy took. her. candy.  *gasp* Mommy mentioned something  dastardly about “eating it later.” This led to screaming the likes of which has never before been heard. Her first two attempts at the eardrum-piercing scream were too breathy, but the third attempt nailed it. She  had people on the other side of the office poking their heads out from behind their paperwork to stare. Telling her that because she screamed she was now getting no more chocolate did not help matters. Threatening her with a time out got the response of, “You can’t give me a timeout, there’s no timeout place here.” Wow. Let’s just say it takes a lot to make me laugh hysterically in public, but I did. Then I said in a sing-song voice to my precious little daughter who I was not strangling (so, WINNING), I said,  “I hope you get lots and lots of shots today!”

Okay the truth was that I honestly did not know she was getting any shots that day. I never would have  said that if I had known she was getting shots that day.  I thought she was just in for a physical where they checked her tummy and stuff. But she was also in for four shots. Four.  And when the nurse told me this in response to my sing-song statement, well that sobered me up real quick. I immediately said, “Oh honey you are getting shots today, but I didn’t know! It’s not because you didn’t behave correctly. Shots are good for you and they make you healthy. They are not a punishment.”

Nothing I said mattered. For the next half hour everyone within the building heard the loud wales of, “Iiiiiiiiiiiii Doooooooooon’t Liiiiiiiiiiiiiiiiiike Shots! Nooooooooooooooooooooooo! I doooooooooooon’t waaaaaaaaaaaaaaant!!!!!!!!! Waaaaaaaaaaaaaaaaaaaaaaah!!!” I told her that if I could I would take one for her. She got hopeful and said between sobs, “I wish you  could take all  my shots!” Stinker.

After the pokes they gave her a treasure box toy for being so… um, loud? She happily strolled out of the office cheerfully playing with her tiny plastic camera. I didn’t strangle her once.  Where’s my parenting trophy?

More parenting stuff: In other news, I’m starting to regret telling my daughter about the time I found a horse outside. He had escaped from the fair and was wandering the Carl’s Jr parking lot all done up like a faerie tale. It was probably the most exciting thing that ever happened to little kid me. I ran up to him and held his reins. I had no idea what to do next, but was grinning my head off. My sister had to tell my mom that I had a horse when she showed up. Her facial expression was priceless. It was a great memory. I told  Lali about my horse during our bedtime story. (A quick aside about our bedtime stories, in the beginning it was all  Bible stories and great works of literature. It didn’t take long to devolve into Disney princesses. Now I’ve started telling her  stories about my childhood and how her daddy and I met and married. I lost my mom when I was nineteen and I regret not knowing more about her precious memories. So now I make an effort to share mine.)

But now  I’m constantly hearing in my daughter’s overly excited voice, “The next time you see a horse outside get me!” Then her tone drops to a  serious one. “I want to ride him. I will ride on him. On the horse.”

:)

Tonight I taught Laelia how to play Uno. We take out the wild cards for now, but leave in all the other ones. She beat me three out of three games! I only helped her the first game! She’s really good at this even though the box says ages 7 and up. Because of the arthrogryposis in her hands we hold something (in this case the Candyland game box) between us  so she can lay her cards out without having to hold them. And that way I can’t see her cards. Well not that I’d need to since every time she  has a turn she starts out by  announcing every card she has.  (It makes the game take ten billion years to finish. “Oh that’s a green seven. That means I need a green card or a  seven card.  This card in my pile is red and it’s a six. This card is blue and it’s a zero. This card…”) The discard pile and deck are to the right of the Candyland lid so we can both see them  and get to them. It works really well!  Well until she has to reach over to grab a card. Then I catch her starting to poke her little nose over the lid to see my cards.  She says, “I’m just counting them!” Or, “I’m just seeing if you have a four!” So, you know, it’s totally justified. :) Still I don’t know how she’s beating me. I’m not letting her win! Maybe I need to start enforcing the rule where you have to  say “Uno” when you have one card left. Instead she does a little dance and sings, “I have one card left! I have one card left! I’m gonna wiiiiiiiiiiiiiiiiin. You’re gonna loooooooooooooooooose.”

I respectfully reply, “You mean ‘Uno’ dear.”

 

 

Hip Plate Removal Surgery

Thursday, November 3rd, 2011

Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot. :)

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

 

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. :) She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves. :)

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. :) It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. :) I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???

The day before surgery.

Tuesday, November 1st, 2011

Three airplanes later and Daddy finally joins us!

I got lost at the airport tonight because of the weird roads (PHILLY!!!), but we did find Daddy and then we went to meet our friends at the local diner.

Our buddies!

I had my first Philly cheese stake. Now I can say I’ve done it. :)

Sadie (also an AMC’er) and Laelia showed off their standing and walking skills at the diner.

Once we got home, and after my husband showered, we were finally feeling like a family again. That is until Charley showed me that he brought with him a ton of technology so I can blog! (Bye honey!) So I’ve been lost in my computer for the last couple of hours while my husband has been putting up with all of my daughter’s new discipline problems developed over the last nine days. :) Hehe.

But seriously we have missed Daddy. He is loved. He is appreciated.

Good news! We got a call this morning that Laelia had been bumped up to the first surgery of the day tomorrow! That’s a super great answer to prayer since my daughter is terrified of the hospital. I was so afraid that she would be a scared, shaking mess for the whole day, but now she’s first up!

We have to leave the RMDH at 6:15 a.m. to get to the hospital by 6:30. That will be difficult since we never got used to Philly time and have been sleeping in until 11:00 a.m. every morning and calling it 8:00. :)

In other good news, Laelia is not sick! No coughing, sniffling or sneezing! That’s a miracle since so many illnesses have been floating around.

Tomorrow is surgery! Finally! I see a light at the end of the tunnel!

Update: It’s now midnight. Laelia is not sleepy. Kill me now.

Updateness: Midnight has come and gone and that cheese stake is not sitting well. Maybe some Canadian candy will help…

Another update: It’s official. We’re not going to get much sleep tonight.