Archive for October, 2009

Laelia Day

Thursday, October 22nd, 2009

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Third set of casts in two weeks. At least they’re cute, short and of course  PINK! :)

Laelia’s casts slipped. AGAIN!!!  Once again I find myself heading to the emergency room at  Children’s Hospital, getting redirected to the clinic casting  area and  getting an  emergency cast removal. (Fine. I didn’t want to work today anyway. *sigh*)  The pin in her left foot had come up again too. The difference this time was that  Laelia’s surgeon was in the building at that moment (being followed by his posse of three other  doctors) and willing to see me!  Fifteen minutes later (which is like a split second in doctor time!)  he was checking out her feet and giving  the okay for removal of the casts. He asked the tech to try to save the pin, but then later decided that the pin was just going to keep popping out so it was removed instead of screwed back down. (So much for Daddy  doing the second pin removal. *sighs again*) All over again the baby girl gave a noise like she had been shot by a gun, then came the blood… and they asked if  I   was okay!?! I was thinking, “Forget me! Just take care of the my baby!”    Well that was followed by thoughts of, “Don’t pass out don’t pass out don’t pass out don’t pass out...”   Anyway, she was then  recasted in short casts without a bar to avoid future  slipping. New casts. Oh joy. At least there’s no more pins in her feet!

The casting tech  asked me what color I wanted for her new casts… um,  is there any other  color? :)  

Laelia screamed as soon as she saw the surgeon all the way until we were  almost home. She screamed for the entire cast removal and even louder after the pin was removed and then pretty darn loud as they recasted her.  She was also shaking like crazy, bright red in the face and drowning in her own sweat. She HATES this!  Then she cried through the check out process, getting my parking validated, the looooooooooooooong walk back to the car on the second floor of the parking garage and most of the way home. I got all sorts of looks and stares and pointing fingers from people.  That’s unusual for this little girl–I mean that’s a little over  two solid hours of screaming. Laelia had a miserable time.

So we decided when we got home that the rest of the day  today will henceforth be known as Laelia Day! I promised her that she could have whatever she wanted for lunch and dinner. Any snacks she wanted. Any nap time she wanted. And we’ll even watch cartoons! When we got home she demanded I read her every book  we owned! That took a while.  Then she wanted  some time with Puppy (the name of our kitty), who just had to put up with being pinned down by me while Laelia happily tugged her fur. Now I’m all scratched up. Then Laelia got to play in my purse and she got my cell phone out and started to dial numbers. Sorry strangers! What can I do? It’s Laelia Day! :)

Hooray!! Happy Laelia Day!

Strength

Monday, October 19th, 2009

If you can really measure your strength by what it takes to discourage you, then I need to prove that I’m stronger than these casts, and this day.

The casts slipped AGAIN! But this time we didn’t change them. We’re waiting for them to slip just a little more. Ugh.

The day didn’t  go well for Mama. Funny story.  Charley and I  had a great baby-free time at Disneyland yesterday thanks to Chelsea and Adam. But I guess that wore me out since I slept through my alarm this morning. Then I ran around looking for pants… realizing that they were dirty or in a wet pile saved from the exploding, fiery  dryer which our apartment manager refuses to replace after spotting a line in our contract saying he doesn’t have to replace ANYTHING…EVER! *grumble* (Read your contracts, kids!) So I left in pajama pants (yoga pants) and wet hair. Oh and I lost my phone.  And my husband stole my bathroom while I was looking for it. And because the bathroom is the only light in our bedroom (since they never installed a light in there and the outlet that the lamp is plugged into doesn’t work  anymore) I cut my arm stumbling around in the dark. Then I put on my shoes and somehow managed to rip out part of the sole. Then I got in the car and realized I was completely out of gas. When I got to the pump, I realized I had lost my credit card. (No kidding!)  After fishing six crumpled dollars out of my car, the lady claimed that the pump number I gave her “didn’t exist.” (I think she was messing with me because she thought that would be smart to mess with the totally frantic girl with wet hair and pajama pants.) Then I got stuck behind a car accident. By this time I was 15 minutes late for work. Then I got an email from Charley telling me that we had OT/PT today at 3:15, but I didn’t get off work  until 3:00.  So I had to get off work early after arriving late  (my poor boss), and  pick up Lali who decided to do poopy time right then and there. Then I got lost on my way to Children’s Hospital because I was coming from a new direction, from a different freeway.  We realized her casts had slipped  AGAIN during PT. Then during OT I realized I had forgotten my camera and Laelia’s splints  that were suppose to be adjusted. (Did I mention I’m still in my  pjs?)  Then  Jill  noticed Laelia was very  loose (or as loose as you can be with arthrogryposis) and I explained that Lauren had just done her stretches. Then Jill praised  me for having such great friends who did Lali’s stretches, at which time I realized in a panic that  Chelsea was coming over to do stretches today  and was probably there right that moment because I never called her!  Then I realized I LOST MY PHONE AGAIN!!! How do I do this?! Someone reminded me I had been at Disneyland the day before and I thought I’d lost it there.  I’m sad to say it took me  some time to realize that I was an idiot  who had just called Charley for directions to Children’s so  it had to be somewhere.  I found it an hour later  at the bottom of Laelia’s bag that I had packed last second.

*pant pant*

In other news, today during OT  Laelia  successfully  ate applesauce by  using a spoon all by herself  for the first time ever!!!

So in conclusion:

Best. Day. Ever.

:)

Sick of this!

Saturday, October 17th, 2009

I’m so sick of the stupid cast emergencies! Blarg!!!!

So apparently when I took the picture of Laelia’s left foot with the pin in it last post, it showed that the pin was sticking up. But Laelia had just pulled a bunch of gauze out of that side and I thought that’s why it was looking more pronounced.

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Yesterday when Chelsea showed up to watch Lali, she noticed it too and showed Charley. So then Charley called me up at work, but I was in a meeting. By the time I got to my messages there was an ever increasing panic in each one:

“Hey honey, Laelia’s pin is sticking up a little and she cries when I touch it. I’ll keep you posted.”
“Hey honey, Laelia’s pin really doesn’t look good and the top is running parallel with her toes instead of up and down. That’s not good… call me!”
“Hey honey, the hospital isn’t returning my phone calls so I’m going to the hospital.”

So yesterday Laelia was back at Children’s Hospital having a doctor screw her pin back down into her foot, into her bone. He pushed it down and rotated it the correct way. I got ahold of Charley during the procedure and heard the screaming. It was only ten seconds of pain, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, but it seemed longer, and I couldn’t hold her.

Charley missed most of an important work meeting after spending the morning at Children’s Hospital. He got home late from work and arrived just as Laelia was being put to bed. We talked for hours about our life after that. It’s not been easy.

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Laelia was such a good girl yesterday despite it all. We met with Early Start and Regional Center who did her two year report. We updated her IFSP (Individualized Family Service Plan). She’s doing well and excelling even though her gross motor age is six months. They grade her by age. Her fine motor is now 12-15 months because she turns pages of a book and picks up small things like Cheerios. Her social-emotional skills and cognitive abilities are 18-24 months (normal!). She’s definitely smart! Her language skills are getting better too! She’s now at 16-21 months with receptive and expressive language. Last time she was six months behind, now it’s more like 4-5 months behind if you look at the numbers liberally (that she’s closer to the 21 months than the 16 months). I really think going to school is helping. I just hope all these medical emergencies stop interfering with school!

Her goals for the next year will be to sit up by herself (which unfortunately was a goal from last year; we’re so close!), feed herself with a fork and spoon, and, if she is able, standing may happen this next year. If she doesn’t have the hardware (muscle, etc) then we’ll instead work on her moving under her own power with a vehicle of some sort. Like her car!

But of course she’s having trouble driving her car because of the casts. I hate casts.

Right Pin Out

Thursday, October 15th, 2009

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The right pin came out and the right foot was  recasted in red.

I was going to spend this evening doing laundry, but since my dryer is on fire I guess I’ll blog. (My apartment manager better  replace it this time! His “fixes” don’t work!)

I took the day off to take Laelia to Children’s Hospital to get her casts adjusted (they are the emergency room casts so they are not to the doctors specifications and needed the tops sawed down), and get the pin out of her right foot. Four doctors consulted in our small  waiting room. They were going over what their new plan would be for Laelia’s lower half. They are going to leave the emergency casts on for two more weeks and then replace them with “short casts” since she doesn’t walk or stand,  something they had to ask me about  (this is the doctor who told me she never would, but he forgot apparently). :-/   There was a problem  because the original casts had an X in pen over where they would pull the pin out. So they forgot which side they were doing. And after consulting between the four of them for a while I piped up and said, “Um… right side, guys.” :) One of them smiled at me and said, “Oh yeah we could always ask Mom.” But the head guy needed to see something in writing before he would go ahead on my say so. But it worked out.

They don’t put kids under a local to pull a two and a half inch metal pin straight out of  their bones and out their skin. Laelia’s  eyes lit up in shock, then she screamed. After the pin was all the way removed, a fountain of blood gurgled up behind it. I felt faint. Daddy is definitely taking her next time.

The left pin is scheduled to be removed and the casts changed on October 29th at 8:15 AM. (Which means more like 11:00 AM after waiting at the hospital all day.)

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Left Side’s Pin

Oh and one guy told me that it doesn’t hurt that bad… Does he realize that all I wanted to do after he said that was to stick a medal pin in his foot and pull it out again? He may have recognized the look on my face because he quickly changed the subject.  :) Other than that statement, he was my favorite doctor that day. He made Laelia laugh a lot. She’s my little flirt. :)

Oh and I’m VERY curious who taught my daughter the word, dude.  She’s been chillin’ in the waiting room and telling the nurses, “dooooooode.” :)  I’m trying to teach her, “S’up?” :)

 

Emergency Room

Tuesday, October 13th, 2009

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New casts!

So last night after stretches, Laelia was so fussy that I put her down for a late nap. She slept for about 40 minutes, then woke up screaming unnaturally loud. I picked her up and as I did, her eyes became large and she screamed even louder! Charley got home from work about ten minutes later and she had been screaming non-stop since waking. We noticed that we could only count four of her five toes on the left side. Then we noticed that both casts had slipped down and the toes were receding back into the casts. Also I could see the pin in her right foot sticking out more than normal.

This began a rush to the emergency room followed by hours of waiting on people to cut the casts off. It took forever which was very frustrating.

When Charley first arrived he ran into the surgeon’s fellow, George, who had assisted with both of Laelia’s surgeries. A miracle run-in! George was off for the day and walking to his car. He took a look at Laelia and agreed this was going to be an emergency cast removal and escorted Charley and screaming Laelia into the appropriate place (between the Emergency room and the casting area) to register and wait. And wait and wait and wait!

Laelia freaked while getting the casts removed and redone. It was a little traumatic since she doesn’t know if she’s getting surgery or not. She tends to mistrust everyone in hospital situations. Her little legs and feet also hurt like crazy and that only got worse when the casts were removed and the blood flowed back into her toes. Charley also made the decision not to feed her anything in case they needed to put her under a local to take the pin out. (Which they didn’t, but we didn’t know that at the time because they didn’t communicate with us.)

Earlier in the day our sitter, Megan, had called to say that her baby boy had the stomach flu and she couldn’t watch Lali. Thankfully Melissa got back to me pretty fast and said she could help. I was wondering if I should take the day off tomorrow instead.

I’m doing everything from a cell phone on the couch since I had a bad reaction to the flu shot I took earlier in the day. I felt worthless and stressed until they came back. (Listening the the baby scream while getting casts removed from a stupid cell phone is no fun.)

When they got home I grabbed them both and hugged them tight. I fed Laelia and gave her some pain meds before bed. Charley was shoving food down his own throat at the time; he had barely eaten anything all day. I put Lali   to bed a little before midnight, but she was having a hard time of it. She woke us up every 20 minutes (which I did not react to very well) and Charley gave her more pain meds a little early. Eventually I couldn’t take it anymore and I kicked Charley out of bed (poor honey) and put Laelia in the bed around 3:00 AM. We listened to the rain together and she calmed down a bit as round two of pain meds kicked in. She asked, “What’s that?” and I answered, “Rain,” in a half-asleep voice about 50 times straight. She liked when I talked non-stop, so I prayed out loud for a while.

Then when I felt she was doing better, I suggested she go back to her crib. This was met with her shaking her head “no” and snuggling up to me. But I knew better, and carried her back to her own crib. I prayed that she would sleep and almost as if God was just waiting for the magic words, she fell fast asleep right then and there, a little after 4:00 AM.

I’ve been seeing the caring side of God lately. It’s been too easy to be agnostic during the hard times, but I read, “Cast all your cares on God because he cares for you.” (Found in the last chapter of 1 Peter, somewhere.) And I’ve been trying it. It’s a calming effect.

Although when my alarm went off at 6:00 AM, I laughed like a crazy woman. :)

Rock Star

Thursday, October 8th, 2009

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Singing Along with Rock Band

How do you keep a baby busy who has to sit all day? Get out some plastic guitars and a fake drum set and put Baby on vocals. :)  The picture is of her doing  her version of   Yellow Submarine.  Did the Beatles ever fuss when people weren’t watching? Hmm… :)

We’ve been doing good, just a slight cold running through the house. It’s decided to live forever in my face without getting better or worse. Nice. Does this get me out of reading? No. I still am required to read until my sore throat gives out and I start a coughing fit, and even then the little girl is pretty demanding about more stories. :)  

On a totally random tangent, I found I have an aversion to people saying they should “count their blessings” after seeing my kid (or a picture of my kid). Not cool. I don’t look at  a picture of  them  and say, “Wow, thank the good Lord I’m blessed with the  face I have; it could be a lot worse.” Rude. I know it’s suppose to be a positive thing–thanking God for your working body parts and all,  but think before you speak/post/comment/blog. Seriously.

Okay tangent over.  

Laelia went to school today and once again I am impressed with how her language is developing. We had Subway for dinner and at one point she leaned over and said, “ah aha ah AH AH AH AH!!” like a baby bird who will drop dead without a bite of food. So I said, “Say ‘Sandwich please!’ and I’ll consider it.” So Lali responded, “Sa-wash peees!”

Oh gosh, she sure  doesn’t like mustard. You should have seen her face! Ha! :)

Sickness is Spreading

Sunday, October 4th, 2009

Grandma Christina and Grandpa had to leave early this morning because Grandma got really sick. I’m starting to feel it in my throat as well. Hopefully it doesn’t spread further. Charley was blowing his nose, but that’s about as much as colds affect him.

Laelia seems to be fussy, but not with a cold we don’t think.  Although sometimes I look at her and think it’s a cold. She’s very white and covered in big purple and blue bruises from four attempts at an IV line and one IV line mark. It looks awful.

I remember when we were in the hospital and I saw her for the first time after surgery and she looked so white and pale. Like death. All of  the color was out of her cheeks, and  my heart sank as I looked into that pastey face. Then THREE different  nurses commented that she looked  exactly like me! :) Yeah we’re pretty white in my Irish family.

Laelia used a toothbrush all by herself to brush her own teeth for the first time in her life yesterday. She also learned to “go on a bear hunt.” She slaps her casts to make the walking noise and can say, “Oh no!” when her troop runs into something they can’t go over and can’t go under and have to go THROUGH!!! Then she screams along with the rest of us. It’s just the cutest thing. Everyone surprised me with this when I got home from Deaf Awareness Day.

Okay well we’re resting up today and both go back to work tomorrow.  The weekend  went by too fast.  What are the odds of a snow day tomorrow? :)

Happy Second Birthday, Laelia!!!

Saturday, October 3rd, 2009

Today is Laelia’s second birthday!!! Happy birthday Laelia!!! Who can say they got new legs  for their birthday? We’ll probably celebrate after she recovers a bit more. :)

Second Surgery

Saturday, October 3rd, 2009

This surgery went a lot better in some ways and went a little worse in a few other ways. We knew what we were doing this time around. For instance when they call you back to wait for surgery and also when they call you back to hear how the surgery went, you go to this same dreary little room that’s poorly lit. So we always turn on all six of the x-ray light panels that take up an entire wall to see better. It really lifts the mood in the room when there’s lots of light. Of course when Charley went to take Laelia into surgery a nurse came by and asked why an entire wall of light panels were on when there were no x-rays to see. How do you explain to an all-business nurse that you’re all alone  and your baby has been taken to a scary surgery and you need the “feel good” lights? I just  shrugged and  smiled until she left.  :)

Once Laelia was out of surgery, instead of waiting around for them to call me and for  me to get lost somewhere like last time, I waited a little while and then marched over to the recovery area and said, “I’m here to see Laelia.” They said she hadn’t woken up yet and it’s against policy blah blah blah,  and I said, “I’ll wait here,” as I leaned over their desk and refused to move. Then I asked every 30 seconds to see my baby. It worked pretty fast.  Pretty soon afterwards I  was calling my husband and announcing, quite proud of myself, “I’m watching our daughter sleep. Squeaky wheel. Love you, bye!” :) I’m glad I was there because it took her a lot longer than normal to wake up. The doctor came by to check on her because she was still asleep past the 40 minutes after surgery. The doctor  told me something about how Laelia was probably still sleeping because she wasn’t scared and felt safe since I was there. That made me feel good since  I had been singing to her the whole time she slept (which was over an hour and a half), until I realized that that answer was most likely BS. But at least I was there watching her sleep and  knowing she was okay and alive. If I had had to wait in that waiting room for over an hour and a half of her  in a baby coma after surgery I would have freaked.  Even rock-steady Charley was starting to worry.

I noticed that she had wonderful vitals when  I sang to her. Actually once  I started to sing  her bedtime song to her  and her pulse started to race  like she was  agitated. I realized she never really liked that song because it signaled the end of play time and meant she would have to go to sleep by herself in her crib. So it was kindof eye-opening to see which songs she liked as she slept. There were obvious favorites. Her  pulse and blood pressure  couldn’t lie. :)

By the way, the nurses were so wonderful this time around. Our check-in nurse was giving us useful advice, making sure she spoke to Laelia’s kitty like he was the one getting surgery and even tested his stuffed vitals before testing Laelia’s, and she also told us about how to get free dinner and how to get information during the surgery. It was a much better experience when the people cared!

Laelia was doing better physically this time around  so they stuck her in a busy room with two other kids. One was screamy and whiny and getting her way an awful lot because she broke her arm and the whole family felt sorry for her. The other little girl was a total brat who bugged everyone from the nurses to the receptionist to other families and children, “Make your baby stop crying, I’m trying to heal over here!” This brat finally chased away her mom who slept in a different room and left her free to terrorize the nurses. She would page the receptionist all the time and order them around. She demanded ice cream and when they would bring her ice cream then she would demand a popsicle. Charley spent the night with Lali and they both got a total of three hours of sleep because of all this, which disrupted Laelia’s  recovery process quite a bit. Laelia was fussier than usual and totally sleep deprived. We wondered if the pain meds were working and went home with some stronger stuff just in case. If I had been there I would have asked for another room.

But other than that, only a few hours after surgery, Chelsea and Adam brought over Golden Spoon and Laelia asked for some. So I gave her a small bit and waited for her to spit it out. But she just demanded more and more and more! Her poor sore throat! But she was eating and talking and doing so much better than last time! Last time (only two weeks ago, but it feels like months ago) she didn’t say her first word until 9:00 PM and didn’t eat anything  until the next morning! But this time  she was eating frozen yogurt and a roll and a bite of turkey and  drinking a  ton of water.

Well the ton of water backfired because she wet her bed and her clothes and everything else. Changing a baby’s diaper is just so hard when that baby is in two casts with a bar between them. Not only that but she had surgery on her hips that are just bandaged. I’m going to need to buy some onesies since she can’t wear pants now either.

Once we  brought her  home she went to sleep for four hours! When we went to check on her we noticed that her toes were purple. So we called the doctor and rushed back into the hospital for an emergency cast fix. We were an emergency case so they rushed us through… which took two hours. I’m so glad her toes didn’t fall off! But other than that adventure, she did beautifully once she was at home and able to rest.

Oh and there was only one time when I went into a room I wasn’t suppose to. I was in the bathroom when they called us in to tell us how the surgery went. Charley went in with the nurse and disappeared. By the time I figured out where they went I had to muscle open a hospital-staff-only door, working against the mechanisms that would usually prevent entrance. I really don’t even blink when I do that stuff now. I have no shame. :)

Second Surgery In Two Weeks Done!!!

Friday, October 2nd, 2009

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But Mommy, I’m too sick for surgery today! Oh wait, that’s a nail file. Oh, did I get in Mommy’s purse again? Oops. :)

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Off to second surgery with kitty.

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Laelia and company  looking up at  our reflections on the ceiling of the elevator on our way to the surgical floor.

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They gave a medical bracelet to kitty. They also gave “good girl” stickers to kitty too. Actually everything they did to Laelia (including checking vitals) they did to kitty first.

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Laelia and kitty in their new casts with bars!

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She sleeps better in a lap.

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Hospital crib.

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After four hours at home her toes turned purple so we went back to the hospital to get the cast changed.

Now we’re back home and keeping fevers away. Laelia is fussier than last time, but we’re keeping up with her pain meds throughout the night. We have Grandpa and Grandma and Linda here helping to distract her. So far so good. We all watched Jeopardy tonight as a family and cheered on Lynn Swanbom who won!  We got word that my Aunt Charlotte is  done with her heart procedure. She had two holes  in her heart. Now she’s resting and healing.  It’s so encouraging that we have no more surgeries for a while–for anybody in the family! Well off to bed. We’ll be getting up every four hours. Then I’ll be working all day tomorrow at a conference. If you want to come to Deaf Awareness Day, I’ll be at the DSP booth! Night-night!