Laelia Sky

Wiping off the chocolate remains of what was actually Nate’s sundae.

Laelia’s cousins (Nathan and Josh) at Nate’s goodbye dinner.

Lali (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate? (She thinks about it.) Nate bye-bye.”

Oh and Laelia totally wants a tattoo now. (Nate is a tattoo artist.)

Me: “Laelia, do you want a tattoo?”

Laelia: “YEAH!”

Me: “Laelia, do you want hepatitis?”

Laelia: “YEAH!!”

Me (mock scolding): “What do you say?”

Laelia: “Pleeeeeeease!”

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?

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.

It’s official. We’re losing our respite services because of “severe and painful” (according to a letter we received) budget cuts in California. So far from what we know (and all information is terribly communicated) we still qualify to send Laelia to school. So that’s good. We have a pretty good network of friends now so this is not heartbreaking news, however there are many families with disabled kids who no longer have this support. Not that we won’t miss it terribly, but I’m not worried about us. California has made some bad financial decisions and needs to fix the problems somehow. We were thankful for the time we got respite services; it meant so much to us.

Today I got home and walked into a clean house. My living room was picked up, all my stuff was organized and stacked, my kitchen was clean and Laelia was bathed from the waste up! Chelsea is my favorite friend/godmother/respite person ever!

If it weren’t for a letter Chelsea had received letting her know when Laelia’s respite services were over, we would never have known! Even though the Regional Center sent over a letter via courier service that I had to sign for, it was still unclear. We read it through and couldn’t figure out if the cuts applied to us! And we aren’t dummies! They really needed to make that more clear.

Frustrating.

Grandpa Dean passed away tonight. I got the call a little after 10:00 PM.

For those of you who know my family, my Grandpa Dean is not doing well. He hasn’t eaten since Friday morning and it’s now Sunday night. Please keep him, my dad and Grandma Wynema in your thoughts and prayers. Although from what I’m told, it looks like he only has a few more days with us, but who knows. He has a DNR up on the fridge.

The last time we were up to visit was for Father’s Day as a surprise. Laelia loved Grandpa Dean a lot and played with his feet. He seemed to light up around her too. I wish my camera had not been stolen or I’d have some pictures of that trip!

My dad’s side of the family had this tradition of going by their middle names; a tradition that looks to have ended with my generation. So all my life it was “Grandpa Dean” although his real name is Ira. (Dad’s real name is Stephen but I didn’t know that for many years. Heck, Grandma Wynema’s real name is Twila, which was a competing baby name for a while until we settled on Laelia.) So combine that tradition with my mom’s insistence that we call all grandparents by their title then their first or middle name (i.e. “Grandma Lucy” or now “Grandma Christina”) and you have “Grandpa Dean,” said with as much love as “G’pa” or “Papa” or what have you. 

Of course getting Laelia to say “Grandpa Dean” is more difficult. We were talking about him and she did say “Gapa.” That’s about as close as we’re going to get.

My dad was worried about coming down for Laelia’s surgeries because he didn’t want to leave Grandpa Dean for that long. We were working out worst-case scenarios just a few days ago. Now everything has changed again. It just seems like my family’s been through enough grief.

Grandpa Dean and Grandma Wynema have helped us out with Laelia’s medical expenses (co-pays and $3-a-trip parking fees really add up for as often as we go) and equipment (splints and her new shoes). If not for them, it would be very tight right now. We appreciate them so much! Often we get phone calls from Grandma moments after we realize we have some need. We have been very blessed.

First Thanksgiving

Bye-bye Mama

Okay I’m officially gone now. No more emails or blogs for a week. The apartment is passable, but not as clean as I would have liked. Charley has enough baby food and instructions to last a week (or a year). Lali has more than enough cuddles. Her facial expressions turns to “Get off me mom!” whenever I get near her now.

For those of you who don’t know, this last week has been pretty crazy. Nothing to do with baby and everything to do with our personal and professional lives. And I mean “crazy” in a bad way. We’ve had friends and family go through a lot too. We survived this week, but it’s not the week before a long trip that I wanted with my family.

On the plus side, Lali had a good birthday and got a few gifts from people (thank you!). She also got a new babysitter for her birthday. We’ll miss Phyllis though. She couldn’t meet my demands to move next door, so we finally had to find someone closer. We had several people show up for interviews. Our interviewees were different ethnics groups, family sizes (one family of eight), sexual orientations and one Deaf applicant. It was reminiscent of one of those video montages from a movie. It also reminded me of that one scene in Mrs. Doubtfire. :)

http://video.aol.com/video-detail/mrs-doubtfire-clip/2941807058

Okay I’m joking. They were all good, but none of them were the perfect match. I didn’t have a peaceful feeling about anybody and would rather travel the long distance to Phyllis instead of leaving my babykins with someone I didn’t feel 100% sure about. Then we met with Jessica last Saturday and the door had barely closed behind her before Charley turned to me and said, “When can she start?”

So Jessica, who has had Lali since Thursday, will have her this week while I’m gone, and then Angela will pick her up at the time I would normally get her and take her home. That way she stays on her schedule.

There are a lot of firsts waiting for me tomorrow morning. It will be my first time in a limo. My first time to Gallaudet University. My first time to Washington DC, seeing the historic sights. And most importantly, my first time away from baby for a whole week! That will be hard on me.