The Sneetch of the Week Goes to the Basketball Game

Sky's kindergarten class has a Dr. Seuss theme and every week a student is randomly chosen to be the Sneetch of the week (like the star of the week). Sky was chosen for this coming week so she got to take the Cat and the hat home for the weekend. We had to take pictures of anywhere we went so that we could include them in a scrapbook of the Cat's adventures. Each student completes a page with pictures of what they did with the cat when they were the Sneetch of the week. We had an action-packed weekend as you can see from this post and the 2 more posts after this.
Goooooooooo Eagles! We went to a homecoming girl's basketball game with the Cat.

A brief moment of rest when Brad wasn't climbing up and down the bleechers. Brad really liked that giant eagle.

It was an exciting game and the Biola eagles won!

The eagle borrowed the hat for a while.

The Sneetch of the Week Goes to the Aquarium

Sky has been talking about going back to the aquarium for quite some time now. We had an annual pass when we first moved here but hadn't been back for over a year. So, needless to say, Sky had vague memories of the aquarium and it was a whole new exciting experience for Brad.

The seals were "dancing" a lot while we were there!

We took in a 3D show about turtles while we were there.

Sharks!!!! The crazy thing about this picture is the guy cleaning the shark and the even crazier thing is the guy holding a pole to push the sharks away to protect the guy cleaning the shark tank.

The Cat enjoyed his day at the aquarium!

The cutest darn skipper I've ever seen!

Exploring the play area at the aquarium.

The Sneetch of the Week enjoys her favorite breakfast, strawberry pop tarts, as a special treat.

The Sneetch of the Week Goes to Chuck E. Cheese's

The Cat in the Hat is introduced to Golden Spoon frozen yogurt.

The Cat meets Chuck E. Cheese! Sky also saw her friend (and our neighbor a few houses away), Maggie, a fellow kindergarten student (although not in Sky's class).

The Cat goes for a ride with Sky and Chuck E.

The Cat enjoys playing in our backyard with Sky, Brad and Timi, a friend from Sky's class.

The Helmet

Lila got her prosthetic helmet on Monday. She seems to have adjusted to it well. She will need to wear it 23 hours a day for the next 3-6 months with follow up appointments every other week during this time. She gets to have the helmet off for 1 hour a day for bath time and also to wash the helmet itself. She sweats quite a bit in it and I can only imagine how much more it will be when summer gets here.

The hardest part about the helmet, for me, has been that it takes up so much of her face so that there is much less area for kissing that sweet little face. I try to make the most of the time when she has the helmet off. It's also been hard to deal with people's stares and questions about the helmet. I'm sure that the questions will dissipate once I have relayed the information to the people that I see most often but, right now, it is just exhausting. I feel sad that people don't see Lila as the cute little girl that she is any more.

We also found out that our insurace covers 80% of the cost (which is over $2,500!). So we'll be using some tax return money for this fancy hat.

Since these pictures Sky has decorated the helmet with flower and heart stickers. The stickers can be removed with rubbing alcohol and then new ones applied so Sky is enjoying that aspect of the helmet.

We're still working hard on her neck issues, seeing a chiropractor at least once a week and also doing exercises and stretches at home. The chiropractor adjustments seem to be working very well. Her range of motion is so much better and the chiropractor is very excited about her progress.

The post hospital trauma seems to be improving. Lila is waking up 2-3 times a night rather than 5-6 times a night and she eats and goes back to sleep each time. She had lost a pound through the hospital ordeal so I feel like she is now working hard to make up for it. I do wish she would eat solid food or even take a bottle or sippy cup because I am truly exhausted with the short sleep spurts.

A few days ago I was up with her at 4am feeding her in the living room when I hear Brad vomiting in his bed. So I call out for Ken to go to Brad and I join him in the clean up efforts as soon as I get Lila back to sleep. While we're stripping his bed and changing his clothes, Sky is spouting out questions from her perch on the top bunk: Is Brad going to throw up again? Did any of it get on my Barbie book? It sure smells bad in here! Why are you taking the sheets off of Brad's bed? which finally culminated in: Adam and Eve really shouldn't have done what they did! (meaning that what they did brought sickness into the world) We changed the sheets, gave Brad a bath, put him in clean clothes, got the washing machine going, etc. and crawled back into bed. About 5 minutes later we hear Brad throwing up again so we head in for clean up of round 2. Thankfully there was never a fever and Brad has been completely fine since. Someday I'll look back and laugh, right?

Way Fun

This keeps happening to poor Brad. I dress him in size 3T jeans (size 2T are too short) but a few minutes later he comes to me like this. Guess we need to invest in some adjustable pants or belts...

This is Sky enjoying the sled run at our church's snow day.

Lila enjoyed the festivities today. She is so content to watch everyone having fun around her.

Sky had a blast in the bounce houses! There were lots of kids there-even 2 kids from her kindergarten class.

Sky and Brad got some balloon kitties at snow day. It was an Olympic village theme and each Sunday school class represented a different country and gave out free samples of that kind of food at their booth. Brad ate 3 snow cones from the Iceland booth, definitely his favorite.

We also spent a long time at the playground area with friends. The kids had a blast! It was a perfect day. Sky had been praying that it wouldn't rain as the meteorologists predicted and tonight she thanked the Lord for answering her prayer.

Crazy Kids

Happy Birthday Abraham Lincoln!

Lila was evaluated for molding helmet therapy this past week. It was a fascinating procedure using an eye safe laser to scan her head. It captures the head shape using 4 lasers and 8 cameras in less than 2 seconds! It then shows the degrees of difference between what is considered normal and what Lila's head is . It was determined that she would benefit from this helmet therapy and so we are taking the next step to get the helmet for her. She will need to wear it for 4-6 months and it should improve the shape of her head dramatically. It's ultimately our decision as it is mostly a cosmetic problem but since our insurance covers most of it, we are going to go forward with it. Maybe someday she'll thank us???

Lila also saw a new chiropractor this week. He deals a lot with children and infants and he was able to pinpoint 2 of Lila's issues (digestive problems and a weak immune system) just by looking at her neck problems. I was very impressed with him and he seemed very positive about being able to fix Lila's neck problems.

Lila also had her hospital follow up appointment with her pediatrician this week. Her oxygen levels were great and her lungs were totally cleared up. I breathed a HUGE sigh of relief after hearing that! We also were able to discontinue to breathing treatments. She still needs to take her antibiotic which she really puts up a fight over. I actually brought it with me and asked the nurse to administer it since I have such a hard time and the nurse did no better than I do. Lila just won't cooperate. Thankfully she received 4 full doses in the hospital and we do get SOME down her each day. Hopefully she can stay healthy and get back on track with her sleeping!

Sky continues to love school and is learning so much every day. Brad is such a funny guy. The other day he said to me, "How is my hair looking?" which is especially funny since he has no hair.

Happy Valentine's Day

Ken and I celebrated Valentine's Day by going to Pasadena together (with Lila). Pasadena is a beautiful city nestled beneath some magnificent mountains. We went to a used bookstore that we've been wanting to see for a while and found a few books that we "needed". Then we went to the most amazing place for dinner, Roy's Hawaiian fusion. It was sooooooo good. And the manager came and gave us a $20 voucher for our next visit there. Meanwhile Sky and Brad played with the babysitter, Haley, a Biola senior who really works them hard and tires them out. Did I mention that we also went to a birthday party for one of Brad's little friends this morning? Needless to say, it was a fun day had by all.

Good Bye January!

January was a very challenging month for me. Between treating Lila's head/neck issues and some unexpected illnesses, I took Lila to 12 doctor's appointments, Brad 2 doctor's appointments, and the cat to her vet appointment. And, of course, ultimately ending up in the hospital on Jan. 31.
I also had 4 Saturdays alone with the kids while Ken taught his interterm class and a toilet flood on one of those days. Let's just say it was a rough month and I'll stop complaining. Unfortunately, February doesn't look like it's going to be any easier as I face more appointments for Lila and she will probably get her helmet this month.
I am thankful for Lila's improving health-I don't mean to sound ungrateful. I guess I'm just overwhelmed with trying to keep up with these 3 little people while being a support for Ken.

Going Home

Look Mom, no tubes!!!

I just spoke with the doctor and, it's official, we're going home today! We will have a follow up visit with the pediatrician next week and Lila will need to continue taking antibiotics for 10 days but her lungs are finally clear and she is definitely back to her old self. Unfortunately, she has lost a full pound because of this illness! She looked really full in some of the blog pictures because she had been pumped full of IV fluids. Thanks everyone for your prayers for our sweet baby Lila and the rest of the family. It will feel good to get things back to normal! Please pray the she will stay healthy now.

Almost There

This is how they monitor Lila's oxygen saturation

This is Lila with a drawing that Sky made for her.

The oxygen was turned off this morning at 10am and so far Lila is doing well. The doctors like to see her oxygen saturation number at 92 and she's been between 89-93 consistently, mostly at 90. She needs to sustain this for 12-24 hours and, from what the nurses tell me, this will be most difficult while she's sleeping at night. So, we're in the home stretch. She still has some congestion but it has vastly improved. I told the doctor that I am not eager to leave the hospital until we are sure that she is well enough. The doctor also told me that some blood tests that were done

on Sunday while we were at urgent care have returned results and Lila has a type of bacterial influenza (so she will continue on the antibiotic even after we leave)-influenza B.

Animal Assisted Therapy

Lila had a great night with virtually no coughing episodes. This morning they tried to take her off the oxygen again (they turned it off for a 1/2 hour) but she couldn't sustain the oxygen saturation numbers that they are looking for. She is on the smallest dose possible but still seems to need that help. She's also still on the IV but also breastfed 5 times already today so I am encouraged by that. Her appetite seems to be returning. She continues with breathing treatments that will help break up some of the mucous in her lungs.

I like to try to engage the people who come through and I usually ask the repiratory therapists if they have any kids of their own. Well, today that question backfired. I asked this guy Marty that question and the floodgates opened. He told me all about his wife and how she didn't tell him before they got married that her tubes were tied, how she was already married to someone else when he married her, and on and on.

We had a special visit from a lady with her dog Bailey this morning. It's called Animal Assisted Therapy and the website is www.loveon4paws.org So apparently this lady and her dog visit people in the hospital and the patients' contact with the animal helps in the healing process. Lila didn't know quite what to make of it all but Bailey enjoyed Lila. I told the lady all about Lila's Pepere and Memere who breed labs in CT. A eldery man/volunteer also came to our room today looking for kids that he could read to. Lila was a little too young for that. God bless these volunteers who are out trying to brighten people's days!

Steady Improvement

Lila slept most of the day today but she did wake up long enough to "talk" on the phone with her big sister Sky. Right before the picture was taken she was very fussy and crying and then when she heard Sky's voice she settled right down. Sky sang her a few songs and she just had the cutest look on her face. Sky and Brad are not allowed to visit the hospital during flu season (which is now) but they are planning on joining me for dinner in the basement cafeteria tomorrow while daddy gets his Lila fix.

I saw the doctor today and he seemed to think that we might be ready to leave by the end of the week. Lila continues to receive breathing treatments every 6 hours. She coughed up a lot of gunk today, which is good. I also let the nurse deep suction her with a catheder. She just couldn't fall asleep and kept choking and sputtering. Everyone here thought it would be a good move to speed up the recovery process. I didn't want to watch that so I took a walk but the nurse told me that she was able to get a lot of gunk out. She is now breathing with no rattle sound. She is very peaceful right now. The nurse also gave her a bath which she enjoyed.

I know that lots of people are concerned about my well being but I really am fine. I am very grateful that Lila is getting such good care and is getting better and, quite honestly, I'm enjoying this slower change of pace with less responsibilities. I am calling this Club Kaiser as it is a sort of vacation for me.

Ken is the one who is really taking the brunt of all of this chaos as he has to manage taking care of Sky and Brad as well as his job. We have had some wonderful friends help out with caring for the kids. I can't imagine how we would be managing without them!

I enjoyed a nice visit with my friend Amy tonight. She had watched Brad today and said that she caught Brad and her son Trevor sharing a rotten tomato from a plant in her yard. She said that Trevor doesn't even like tomatoes but he was eating it along with Brad. Brad does have a problem with eating food out of other people's gardens-ripe, not ripe, or over ripe, he eats it all.

My friend Christine is graciously picking up and dropping off Sky at school everyday this week, and even taking her after school to do special things. I tell ya, we have some wonderful friends!

The Patient

Lila (and I) slept very well last night-the best in about a week, I'd say. I tried to feed her a few times during the night but she wasn't interested. Around 5 am, her breathing started to accelerate so the nurse did some chest percussions (light pounding on the chest) and that did seem to help. She also received a breathing treatment which usually settles her down.
She breastfed a little bit and then the nurse insisted on putting her back on the IV since she hadn't eaten since 9pm. That is fine with me. I don't want her to lose weight or not have enough nurishment. I continue to pump milk and try to keep my supply up.
I was encouraged last night when Lila was awake for a while and was very alert. I even got a few smiles out of her as I played with her. She is improving, it's just going to take time.
Last night I had a few thoughts as I reflected on this whole ordeal:
1. What if Lila didn't respond to the treatment given to her? She, of course, is responding beautifully and we are so thankful! But then I thought about God, as our Parent, wanting to give his treatment of grace to everyone but so many people don't want to accept it or simply don't respond to it. I know how I would feel if I had to just watch Lila slip away and get sicker and sicker. I wonder how much more God feels as He watches so many of the Creation that He made and loves "slip away" and be nonresponsive.
2. Haiti. Enough said, right? Those poor people! Lila has every comfort and treatment possible right here in her own private room in a big, beautiful hospital with her mom and dad by her side and an army of people praying for her. We have so much to be thankful for!

Room Change

Here are 2 pictures that I've been meaning to put on the blog:
Top: No, that is NOT Lila in the bouncy seat. It's the kitty that adopted us. Sky has named her Princess Peanut. Last week we had her spayed and gave her the vaccinations she needed. We still don't know where she came from but the kids love her and she is great with them, even Brad who terrorizes her.
Below: A few days ago we made Valentine cupcakes and decorated them. Sky had a great idea of how to make a heart shape with 2 candy canes.

Lila has been moved from Pediatric intensive care unit (PICU) to just pediatrics. She never really needed to be in the ICU but there weren't enough beds in the ped. floor. Now there are enough beds in the ped. floor and they needed our room for a little one who really does need to be in the ICU. We enjoyed the extra care while we had it but our new room has a great perk-it's own bathroom with shower. And, wouldn't you know it, our new nurse is also a lactation consultant. God is good and He is definitely with us through all of this. We have really felt the prayers and have an inexplicable peace through this whole ordeal.

In my last post Lila's oxygen had been turned down a bit. Well, her oxygen saturation numbers were dipping too low so they turned it back up. However, she hasn't had to have the IV again and has breastfed a few times today.

Bells, Whistles, Wires and Tubes

Lila continues to receive great care and monitoring here at the hospital. She breastfed twice since my last post and they have taken her off the IV. She is producing pee and poop diapers which is something that they also monitor closely, even weighing them. They have turned down the oxygen level in her breathing tube and so far she is pretty much holding her own with just a few dips now and then. She will need to improve more in this area before she can be done with the oxygen tubes in her nose. Her cough is still horrible-still lots of gunk in the lungs.

The highlight of her day was being able to spend some time with daddy while I went home to take a shower. It feels good to be clean. There is no bathroom in our room. We actually have to go quite a ways down a few halls to get to the bathroom.

Not RSV

The nurse just came in a few minutes ago and said that the test for RSV came back negative. I'm now waiting to speak to the doctor to hear any other throries on what it could be. Lila had an ok night. Still lots of coughing and choking. She did vomit up a bunch of mucous early this morning. During the night she was suctioned again and had 2 breathing treatments. She's definitely sleeping more peacefully. Her blood work came back and showed an increase in white blood cells which makes sense if her body is fighting off an infection. Please pray for my milk supply to stay up even though she is receiving almost all of her nurishment via the IV. I'm pumping but I already feel a drop off in production.
On a different note, Ken got an interesting report from the babysitter. Here's what he wrote:
So here's a story for ya. Shayleen (the mom who took Brad yesterday) said that she changed Brad's poopy diaper and that Brad told her he knows how to go potty. So after that, when he had to pee, she said that he stood up in front of the toilet and did some pee in the potty!!! I said "What!? No. That isn't right. He's never done that before." She said, "Well, he seemed to know what to do." Then I said, "OK Shayleen, Brad will be spending more time at your house this week!" So after everyone left, I asked Brad about it. He said "I did a mo-bit (that's how he says "little bit" pee in the potty."