Well, That Was Fun.

Please note the heavy sarcasm in this post's title. The events I'm going to share with you were most certainly NOT fun.

Oh, where to begin...

Just a few days after my last post ("Lily Eats!"), Lily started acting sick. It was Good Friday, actually, she woke up and was cranky and rocking a lot, which she usually only does when she's tired. She also didn't have much for breakfast that morning, but sometimes that's just how she rolls. She had an eye appointment that morning so we had to get moving pretty quickly. She was more subdued than usual for the whole thing, and then fell asleep in the car afterwards (VERY unusual for her). At this point I wasn't too worried...

Then she slept until lunch. Then she slept through lunch without eating lunch. Then she slept all afternoon, all evening, and all night without eating anything since breakfast. I started to get worried about mid-afternoon. I decided to take her to the doctor the next morning.

So the next morning (Saturday) we got up...and she seemed a little better. She was more alert, ate a decent breakfast, and was playing a little bit. I decided to hold off on the doctor (a fact which I regret now!). She did ok until just after lunch, when she went down for a nap, and basically didn't wake up or eat for the rest of the day. She also had a cough and a low fever.

The next day was Easter, and I still didn't think she was ER-sick, so we went on with our plans but Lily slept the whole day and barely ate anything. Decided to see the doctor first thing Monday morning.

Monday, April 9, we saw the doctor in the morning. She listened to Lily's lungs and declared she had pneumonia without sending us to get an xray. Lily's O2 sats were low for her, never getting higher than 87% in the office, but the doctor wasn't sure that we were getting an accurate reading. She gave me the option of getting admitted to the hospital or coming back the next morning. After much consulting, we decided to come back that evening and in the meantime give Lily some nebulizer treatments at home.

That evening we went back, her cough was worse, her O2 sats were no better, and they decided to admit her. So Lily got her second ambulance ride. I must say that it was not nearly as cool as her first because we didn't get the cool pediatric transport unit, just a regular ol' ambulance :)

That was a looong night. After getting admitted, they couldn't get Lily's sats to stay above 90. Finally at 4am they transfered us to the PICU so that she could get more oxygen support. I think I got about one hour of sleep that night.

The next morning, Tuesday April 10, after a rough night

We learned on Tuesday that she did NOT, in fact, have pneumonia, as evidenced by a chest xray. She had bronchiolitis caused by a viral infection.

The morning of Wednesday, April 11

Except that on Wednesday, she developed a high fever and guess what? ALSO got pneumonia on TOP of the bronchiolitis. Sigh. They started her on antibiotics that day.

On Thursday morning, her sats were still not doing great, so they had to put her on a ventilator. She had to wear this bonnet to hold the mask tightly over her nose, and she was NOT a fan...

"I'm taking names..."

Poor little girl could NOT get comfortable with that mask on. She was so tired she would fall asleep sitting up (the only position she wanted to be in), and we put pillows around her to help prop her up:

"I'm tired and I know it..."

I think it was on Thursday that they also put an NG tube in to feed her because she wasn't eating much. And I don't think she was allowed to eat by mouth with the high amount of oxygen she was using.

Thursday night was the worst...she couldn't get comfortable. Finally around 3am I had the idea to strap her in a chair so she could sleep sitting up:

She had the Bipap mask on for two days. Finally on Saturday morning they took it off for a break, and that day she really turned a corner. She smiled and started playing for the first time in a week:

Saturday morning, April 14...playing!

The next few days were spent weaning her oxygen down enough to get out of the PICU. I think this picture was taken Sunday evening (all the days kind of blur together):

"Can I go home now?"

On Monday, April 16 we got to leave the PICU!!! Then we spent one more night on the regular floor before getting discharged on Tuesday, April 17.

"This new room is nice but I'm ready to be home..."

So that's what we've been up to. Lily is now officially diagnosed with Reactive Airway Disorder. She's using an inhaler twice per day now, and is back on Lasiks all to hopefully prevent this from EVER happening again.

Lily Eats!

Lily has had some break-throughs in eating lately. Over the weekend she ate about a quarter of an apple, pepperoni, ham and sausage pizza toppings. Tonight she ate hotdogs, mac & cheese, and raw broccoli for the first time. Here's a short video from her dinner tonight:

Lily has been home 9 months! I guess that's how long she needed to learn to eat solid foods :)

Party Pictures

Here are some pictures from Lily's birthday!

Her birthday outfit:

Birthday dinner at Olive Garden--She ate breadsticks for the first time!

Yummy cake:

Lily "blew" out her candle by putting her hand on the flame. No, I'm not kidding. Her hand is fine.

First taste of cake (please ignore my funny faces):

This is her typical reaction to new food:

She got excited when she saw the spoon with ice cream...

Little did she know how cold it would be...

BRR!!

All in all, it was a great birthday. Happy Birthday Lily, we love you!

Happy 3rd Birthday, Lily!!

Today our sweet Lily turns three years old!! I am both excited and a little sad--but mostly excited :). Mostly I am sad because I am really going to miss her Early Intervention therapists. I'm not going to miss all the therapies, but I will miss seeing them every week! Right now the plan for her future therapies is to have most of them done at daycare, and about once/month have them at home so I can see her progress. I will continue to take her to Physical Therapy and we will start outpatient feeding therapy, both every other week. I was also able to get her a one-on-one aide for while she is in preschool next year! The school system is going to do their best to provide an aide for daycare, too, but it's the end of the year and budgets/staff are in low supply. Still, I am happy with the results and I feel they are doing the best they can with what they have to work with.

I just finished baking Lily's cake for her little party later, and it smells yummy! I will post pictures of her first bites of cake and ice cream tonight :).

Bye, Bye, E. I.

It's hard to believe that Lily will turn three in less than a week! Her birthday is March 14 (next Wed). This means that she is aging out of Early Intervention (E.I. for short) and her services are being taken over by the county school system. I am really going to miss seeing her E.I. therapists, especially Ms. Susan! I don't know what her new therapy schedule will look like yet, but hopefully we can tone it down a bit.

I have a low-key birthday planned: basically just dinner and cake/ice cream with family. Lily doesn't understand what a birthday is yet, so we'll wait until she's a little older to have a "real" party :). Hopefully she will eat some cake! I am looking forward to giving her her first taste of ice cream, too :).

Just a quick post today, and I'll end with a few pictures:

It's kind of hard to see here, but she is wearing her Skidders with her SureSteps:

Yesterday she figured out how to climb onto the couch:

Eight Months Home!

Today marks exactly eight months since we arrived home with Lily! She is doing really well. Since she is about to turn three (March 14!) she will be leaving Early Intervention and will start receiving services from our local school system. Because of this she got re-evaluated last week and I thought I'd post the results here to see how far she's come!

Self-Care: 12 months
Social-Adult Interaction: 8 months
Social-Peer Interaction: < 24 months
Social-Self-Concept and Social Role: 11 months
Receptive Communication: 5 months
Expressive Communication: 10 months
Gross Motor: 11 months
Fine Motor: 10 months
Cognitive-Attention and Memory: 11 months
Cognitive-Perception and Concepts: 13 months

The only one I'm not sure I agree with is the receptive communication. I was pleased to see that her fine motor skills have caught up to her gross motor, and all her social/communication skills are at least at the eight-month level, which is appropriate since she's been home eight months. Go Lily!

Sure Steppin'

Lily got her new SureSteps (orthotics) last week. They give her extra ankle support to help her with standing and walking. It took some searching and creativity to find non-lace shoes that she could wear with them (we like to avoid laces because Lily eats them...while she's wearing them...).

New Balance sells extra wide shoes, so we tried these:

Left foot with SureStep:

Right foot with SureStep:

Just 'cause I'm cute :)

Unfortunately the velcro straps weren't long enough, so we had to improvise a bit with strips of extra velcro (the black strips):

Lily doesn't mind wearing them and they do help!

I also got her a pair of Skidders shoes to go with her SureSteps, and they work too. I haven't had a chance to take pictures of those yet, but I will! They are really cute. A girl can never have too many pairs of shoes, right?? :)