Laelia Sky

Physical Therapy

This is the year for mobility! We’re working hard to see Laelia sit up, stand and scoot before she turns three! We found out at our last trip to the PT that her body is still not in the position for standing. That’s what the surgery was for so we’re bummed as you can imagine. But she is much straighter! We have some new hip stretches for her (that she hates) and some new weight bearing positions for her (that she hates more), so we’re hoping all this hard work will pay off before next October. If not, then we’ll see if another surgery can’t do the trick. I’m pretty optimistic though.

It’s weird, sometimes she can’t do something that I would think she could do, like get out of a kneeling position on the couch, and then other times she does something I didn’t think she could do, like scoot across the living room!

Here’s the video of the scooting!

We found out some interesting things this week and I’m not sure what to make of them. Apparently how her hair all seems to come from that whorl in the back and then sweep to the side (she doesn’t have a straight part like me) is due to her arthrogryposis and the position her skull was in while in the womb. Also her labia didn’t fully form since her legs were so wide spread in the womb. It probably won’t affect anything, but who knows. Just random things for Mommy to worry about.

Anyway, one thing the surgery really helped was her feet!

This is before her bath so there’s still crusties on her feet from the casts.

Happy girl!

~~~

Progression of the left foot:

Left foot at birth.

Left foot after minor surgery AND serial casting.

Left foot after major surgery!

Go lefty!

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!

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.

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.

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.

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.

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.

Off to second surgery with kitty.

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

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.

Laelia and kitty in their new casts with bars!

She sleeps better in a lap.

Hospital crib.

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!

We’re heading off to Laelia’s second surgery in a couple hours. The surgery is at 1:00 PM and we’re ready for it. She did really well with the first surgery after the initial 32 hours or so. We’re praying for lower pulse numbers, higher oxygen numbers and no high fevers this time around. Also we’re hoping for no freak outs–from Mom or baby. :) 

Laelia has been doing well this last week. I think that’s what’s making this upcoming surgery less scary. We’ve taken her out and about with no problems. She’s been able to hang out with Adam and Chelsea and some baby friends just fine. Last Monday she had school, then the bus dropped her off at Lauren’s and she met Lauren’s betta. Then I got off work and dragged her to Children’s Hospital for physical therapy and occupational therapy. It was a busy day and she did very well. Here’s a picture of her on the caster cart that she got to push herself around in during PT.

I gave my Dad a project and he says if we visit for Thanksgiving maybe he’ll have something nifty built for her that she can push around in.

They had interns on the therapy floor at Children’s Hospital last Monday. As always she was beloved by all. Interns just love her–she always has some new splint for them to look at and study. And they all mentioned how good she was. And a few people asked how she broke her leg. (My favorite answers are: skiing accident, fell out of a helicopter or elephant stampede!)

She also went to the Brain Tumor walk last Saturday to support some great people. Here’s a picture of her trying to grab Carolyn’s glasses.

She also has taken very good care of her kitty (since we told her that kitty was post-op too). Now whenever we give her anything she has to share with her kitty. Here’s a picture of her getting a drink while at the same time giving her kitty a drink.

Well I have to bathe the gross baby now. She has finger paint under her nails and dirt everywhere. I have to get the surgery site really clean while not getting the cast wet at all! Hard work. She’s been begging for crackers all morning so hopefully she’ll last the next four hours without food. She has this habit of saying, “Baby baby baby!”  when she wants attention. Kind of like saying, “Hey! Pay attention to the baby!! That’s me, people!!”

I’m worried that she’ll be sitting in that familiar waiting room and realize what’s happening… AGAIN. Poor thing. I can’t wait for this to be over. I’m ready for a lull in scary events for a while. Well, I’d better go pay attention to the baby baby baby!

Oh and if you didn’t notice, I have a lot of cute videos of Laelia on this page. Just click on the words in pink to see the videos.

Is it my imagination or is her right, casted leg able to move towards the center better after surgery? See how her left leg is stuck out to the side? She always has her legs wide, unable to bring them together. I wonder how she’ll be after the IT band on her other side is cut? She will sit like a lady yet! Love the goofy face.

The cast starts right under where her hip surgery was and goes down to wrap around her foot. This is different than what we expected, but the doctor wants to try it. The split down the cast is to allow for swelling. She will get it re-wrapped on the day of her second surgery.

See this cast? So spoil me already!

Laelia is doing loads better today. She has been playing and laughing and using all her strength to drag her casted leg around. She’s just a bit more fussy than usual and has no patience. But really if you didn’t know her, you wouldn’t know anything was wrong, because she’s acting just like a typical kid. Except I know how good she can be. Chelsea and I gave her a bath by wrapping her leg in a ziplock bag, Target bag over that, then a towel around that. Then we laid her down in the bathtub and slowly poured water on her from a pitcher while scrubbing her. Then it took her about ten minutes to get covered in squash and milk. :-/ But she’s doing so good! Kids really do bounce back fast!

Thanks again for all the prayers! There were times when we should have been distressed, but we instead felt supernaturally calm and peaceful. Thank you!

Oh, and we got all our insurance decided on! It’s not going to change and it’s going to be less than $700 out-of-pocket for all surgeries, visits over the next months, medications, etc!!! (Charley says, “For the price of two iPod Touches, you got new legs kiddo!”)

And I’m not sick anymore! And it looks like the scary letters we’ve been receiving from Regional Center may not apply to us! (They said they were taking our Respite services away and also implied that she may get kicked out of Early Start beause of California budget cuts, but so far nothing has happened.) So things are looking up up up!

Here are some Dr. Baby pictures. You remember when Laelia did occupational therapy stretches on her stuffed bear? Well here’s her caring for her new kitty.

Some medicine for her stuffed kitty!

Dr. Baby checks stuffed kitty’s chest. :) She got her own chest checked every hour or so in the hospital. Now she checks kitty’s vitals just to be safe. She’s using the base of a flag of Swaziland to do it.

Laelia did better at skipping breakfast and lunch than I thought she would. She just kept looking at us like we forgot something. Then when we packed up her stuff to leave, she really was barking at us. We were pretty good at distracting her during the two hour wait before surgery. We had to meet with the anaesthesiologist, surgeon’s fellow and head nurse. Then we changed her into her hospital gown and I tried to control my tears.

They asked who would carry her to surgery and Charley responded, “Her mother,” faster than I could say, “I think I’m going to throw up.” I went to the restroom and did just that. After that I got on a mask, hair covering and gown of my own. Then I carried my confused little baby into the surgery room. I set her on the table and tried to calm her as they put the gas mask to her face. I wasn’t doing well so they kicked me out while she was still crying and struggling against the mask. It wasn’t the way I wanted to leave things, but I was about to pass out.

The waiting began. Then everyone was distracting  me, although I demanded more than peek-a-boo and stuffed animals. We waited for a billion years which actually turned out to be a little less than three hours. Then the surgeon came to tell us how it went. He said it went well and he only had to use one pin. He also decided to only work on three toes once he was in there. We’ll see how that will turn out. Then he said that she should wake up in about 45 minutes and one parent could see her at that time.

Then we went back and waited again. This time I was going crazy. I had written on EVERY form I filled out that day that I wanted to be there the second she woke up (or even as she woke up), and was terrified that she would wake up and be alone and terrified.

Then almost an hour later they called on the loud speaker for one parent of Laelia Wesley to go to recovery. So I left and went to recovery. AND NO ONE WAS THERE!!! I said, “Hello?!” in the worst, shaking voice, and NO ONE answered. Then I ran around the hall looking for another room marked recovery. Then I stopped two medical-type-looking menfolk walking down a hall and started panicking as I said, “My daughter! Where is she??! She was in surgery and now she’s not and.. WHERE IS MY DAUGHTER?!!” They directed me down a hall which turned out to be WRONG! Then I found another medical-type women (who I yelled at), and she directed me down a hall that ended at a door marked “hospital staff only” with no way to open it without a pass. And at this same exact moment I heard some little ones crying on the other side, and recognized one of those voices as my daughter. (I turned out to be right, but couldn’t know it for sure at the time.) So I began to pound on the door like a crazy woman. And I mean POUND. I tried to tear the door apart with my bear hands as my dad and sister (who finally came out to help me) backed away with a scared sort of look. Then someone came out and directed me back to the original room (now occupied with people), and showed me down a hall I didn’t see before to a window I was suppose to divine was where I waited for someone to notice me. Then I was told in a harsh tone, “Stay here,” as that women disappeared down another door for hospital staff only. I think my Christian response was something to the effect of,  ”Like hell I’m staying here.”  So I followed her and pushed my way in. Then finally a nurse asked who I was here for (and said it like I was about to kidnap everyone in the room) and I said, “Laelia,” and they took me to my baby. Once I saw her I started balling. I got control of myself before I approached the bedside of my pitiful-looking child. When the harsh-toned nurse asked if I was “okay” in a tone that spoke volumes, I went off on a diatribe, “No, your incompetent, idiotic staff…” in a cooing tone while looking at my child and brushing her hair with my hand. I pretty much told the nurse off while hushing my child. I had Laelia in my arms within moments (which was hard with the wires and leg cast) and she immediately calmed down. Then the nurse said I needed to put her back on the bed so they could wheel her to long-term recovery, to which I simply replied, “No.” So the nurse then went to another nurse and switched out. (See, I’m scary!) The new, slightly intimidated nurse asked if I would like to be wheeled into the other room in a wheelchair while I held my daughter. That’s better. I made sure to be incredibly sweet and nice to this new nurse. “I like you,” I responded, trying not to smile because I would show too many teeth and scare her away too.

I guess Charley had the same experience as me when they finally called for other family. He came out and announced himself to the first person he saw with a clipboard, and was given a dirty look as that person took off. Then he just planted until we found him. Stupid system. Retarded!

The thing I had worried about was that Laelia would freak out when waking up without her mom. Well, sad to say, I was right. Her heart rate climbed so high that she worried the staff. When I came in and she saw me, her heart rate immediately went down. When I went to the other side of the bed to pick her up, there was a moment when I was out of view and all her monitors started beeping loudly as her heart rate jumped up to 190! (100-120 is normal.) Then when she saw me again and I lifted her into my arms, her heart rate dropped down to normal. Now imagine being asked to put her back in the bed after that! But I was a good girl and didn’t kill the nurse.

Once in the long-term recovery room I noticed just how out-of-it my baby looked. But she was alive. And surgery was over. And she was in my arms.

She had a rocky start after that. Her oxygen was too low (making everything beep and a doctor run in), then her pulse was too high. Well, REALLY too high. It jumped up every single time I stopped physically touching her. At one point I put her in the bed and noticed both my legs and the arm she had been resting on were all asleep. So I had to put her in the hospital crib, but I leaned my whole self over her with my other arm under her and rubbed her tummy and chest with my free, rather numb hand. (It was a weird sensation to remove my hand from my daughter’s chest and at that same moment have two monitors punish me by beeping loudly! Her whole system was only going to behave if I was loving on her.) The thing that shocked me was how much pain she was in. She was so confused and scared. It was hard to see. I’ve never seen her like this. Her oxygen was making me dizzy and my back was killing me, but I didn’t realize it at the time. Only when Charley came back from his trip to the apartment and took over did I realize I had been standing and hunched over in that position for five hours.

After that I threw up again and had other bad side effects from worrying. I’m realizing more and more than I’m a weakling when it comes to this stuff.

She said her first words around 8:45 PM. She looked at me clearly (she had been pretty hazy up until this point) and said something like, “Ga boo ma ba?” Then her eyes hazed over again and she was crying. Then around 9:15 she allowed me to put her sippy cup in her mouth and she took a sip. Her throat burned (they put a tube down it that they didn’t tell us about) so she didn’t like that. Then they brought us some apple sauce and said she needed to get something down or they couldn’t release her the next day. So it was stressful when she couldn’t get anything (food or drink) down until eleven hours later!

The next day we got books from her room and some other foods from home and she did much better. She was able to get down the apple sauce from the night before and also some crackers. That’s all we needed to be able to give her the oral medication… that she spit out. *Sigh* But then we tempted her with two hours of Elmo (kill me), and she did even better with the medicine. Elmo got grating by the end, but since she doesn’t watch tv at home, it was a special treat that kept her attention. Well, that, and reading her favorite book a literal 16 times in a row. Charley and I switched off for that one.

Then we got to take out her IV and go home! She cried a bit in the car, but fell asleep. For some reason she didn’t like right turns. But we were so thrilled to get to take her home! When we got home we fed her more, more oral medication too, and had group nap time. It was great!Mommy, daddy, auntie Em, Grandma, Grandpa and baby all took a nap. We were tired! She was back in her own crib and was looking less pasty. Her lips were pink again and she had real clothes on! It was a sight for sore eyes.

We fought off a bit of a fever after coming home, but it left as soon as it started. She ate her dinner fine. She has sat on the couch with her leg elevated while everyone takes turns distracting her since then. For the next surgery when the grandparents are gone, I may elicit help with this. It takes a lot to distract a post-surgery baby.

But she’s doing so much better now that she’s home! She’s doing so well. So so well! She laughed! And she can focus her eyes! And she can eat! And she hasn’t thrown up once! And she’s swaying to some music right now. And she’s holding her stuffed kitty. And she’s telling us what sounds different animals make. She does cry when we move her or lift her, and she is fussier than usual, but I’m so happy with how she’s doing. I really thought after our rocky start that she would not be doing well. I was thinking the worst. I’ve been feeling her heart and it’s normal. She got a bit more out of her lungs too. She’s kinda raspy and the nurses and assistants asked me if she had a cold before surgery… um, no, I’m not that stupid. But then the doctor informed them and us that this was normal for post-op. We cheer when she can cough it out. We cheer when she eats. We cheer when she says anything. She’s pretty spoiled. And that’s how it should be.

I honestly have no earthly idea how we are going to do all this again in two weeks. But that’s still the plan. And her left foot is worst off so it may take longer. I’ll be glad when it’s all over with. But at least this next time I’ll know exactly where to go for recovery. And Charley will be the one to carry her into surgery. And we’ll know what stuff to bring. And maybe we can borrow a computer so we can give better, more timely updates. Lots of things to plan.

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!