Go away sickness update

We found out yesterday morning that Ethan tested positive for RSV from the nose swab they took in the ER on Friday night. We were obviously not happy to hear that and also knowing that Lila most likely had and has RSV as well.

I'm now coming down with it too. It appears to hit hardest on Days 4 and 5. My mother in law has it now and she's on Day 4 and she's miserable. I started feeling off, runny nose and slight cough last night. I feel fine for the most part but I know it's coming.

There's really no treatment for RSV, except if it effects you in a way where you need nebulizers, albuterol, etc to help you breathe. Ethan responded well to the extra albuterol and 4 treatments a day and once he got over the Day 5 hump he gradually got better. We'll be keeping him out of school for the rest of the week so the RSV doesn't just keep running around the school. Evidently you can get it over and over again.

As of now, Lila is on the mend as well. She still has a wet cough and a runny nose, but she's much better. She has what I would call a regular cold now and it's Day 11 for her and Day 9 for Ethan. Ethan still has a wet cough, runny nose and will continue on 4 treatments a day until the cough is completely gone.

Ken has pretty much been sick since the first of the year. He thinks he's gotten sick 3x with different colds and now feel nauseous at work today.

Sickness, be gone already!

Go away sickness!

While I was away on my girls weekend on Martin Luther King, Jr. weekend, Ken sent me a message on Saturday saying that Lila had woken up that morning covered in vomit from coughing. She didn't really have a fever so we weren't worried. We figured she had what Ken had earlier in the week.

Monday morning Ethan woke up with it as well. When I got home later in the afternoon I took their temps and they were at almost 100 so nothing to really worry about. We gave them Benadryl and Motrin and put them to bed

By Tuesday, Lila didn't feel too warm but I took her temp anyways and it was around 100.5. Ethan still seemed fine just a bad cough and low grade fever. Lila ended up throwing up a bit from getting upset and from a coughing fit.

On Wednesday both kids threw up from gagging while coughing or at least that's what we thought. Lila had a fever of 102 so we treated it with Motrin and she just cuddled with Grammy and me all day. I took the day off to be with the kids.

By Thursday Lila's fever came back at around 101. I had planned on taking her to the doctor that afternoon but she perked up around lunch time so I put it off.

On Friday we kept Ethan out of school for the 2nd day. Both kids woke up continuing to have a nasty cough. Ethan's cough kept him coughing and waking him up because it was so bad. Lila seemed to sleep okay at night. Ethan ran around like normal until about 2pm. At 2pm he laid down on the couch and immediately zonked out. He woke up a bit later and asked me where Grammy was, got upset, then promptly fell back to sleep. He hardly ever just falls asleep like that or even anywhere but his bed or ours.

By 3pm he really needed a treatment and I could hear him wheezing. His respirations were high and he kept sucking in his belly to breathe. I called Kaiser's advice line and talked with a nurse to see if we should bring him into the ER or wait for an after hours clinic appointment on Saturday.

After speaking with the advice nurse for about 20-30 minutes, counting his respirations 3x we determined that the oncall doctor, the nurse and myself didn't feel comfortable waiting for the morning.

So we headed to the ER. He coughed and wheezed all the way to the hospital and fell asleep almost immediately. At this point he'd pretty much been asleep since 2pm only waking up to take do his treatment at 4pm.

At the ER they took his temp in his armpit at 99.9 and his oxygen level was between 90 and 93%. They put us into a room. The doctor came in about 15 minutes later and examined him saying he felt warmer than 99.9 so she ordered a rectal temp. She looked at his ears and said that he definitely had one ear infection, if not two.

30 minutes later the nurse came in and gave him Tylenol and an albuterol nebulizer treatment. He perked up from the albuterol. Before this he had been laying on the gurney asleep or half asleep breathing hard. They then came in to take his temp which I thought was odd since they had given him Tylenol just 30-40 minutes earlier. Seemed kinda backwards to me. Even still his temp was 99.8. So my guess is he was really around 101 when we came in.

After this we were sent to xray to rule out pseumonia. 15 minutes later the doctor had looked at the xray and talked with Ethan's pulmonologist and they had decided that because his xray was clear that we should be prescribed a steroid for the wheeze and antibiotics for his ear infection.

After our 3 1/2 hour stay at the ER and waiting for Ethan's prescriptions we headed to McDonald's to pick up dinner and got home about 1130.

We ate, went to bed and were up at 2am to give Ethan an hour long treatment which helped but didn't change much. Ethan was wide awake at 7am (so much for sleeping in). I went to pick up Lila from my parents house about 9am and Ken laid down with Ethan for 90 minutes, got him up for a treatment.

By noon he was still refusing to eat and was really tired again so he laid down with me for a three hour nap!!! By the time he woke up for his afternoon treatment he had slept 4.5 hours out of the 8.5 hours he'd been awake and spent 2 hours of the time awake doing treatments.

The good news was that after that nap he started moving around and playing again. Since yesterday his appetite still isn't the greatest but he's not laying around either.

We had an interesting time attempting to get the liquid steroid down him. We mixed it with apple juice, then orange juice, then sugar this morning. Each time he either refused or threw it up. Thankfully he doesn't appear to really need it. We're still trying to give it to him but I think the wheezing has subsided quite a bit or even gone away altogether.

Since yesterday Lila has been whiny and clings to me. She doesn't really want daddy, just mommy. I think I'll need to take her in tomorrow to see if she has an ear infection. Until then there will be a lot of mommy/Lila time. Thankfully she's playing with Ethan now and giving me a rest. I have managed not to catch this horrible cold or flu. I feel a little weird today with drainage at the back of my throat, but otherwise fine. The test is still out as far as whether Ethan's got RSV, influenza or just a nasty virus. We should know today or tomorrow which one it is.

So that's what's been going on with us over the last week. Sorry for the long post. I'm hoping to look back on this posts after some time has passed. It's long so I can remember what happened later.

Kindergarten Registration

Yesterday was the dreaded Kindergarten registration day for Elk Grove Unified School District at our home school Sunrise Elementary. I got up at 3am and arrived at the school around 340am with my friend Ali. Between the two of us we had 3 spots to get filled.

Why did we arrive so early? Well, it was supposed to be 430 when we arrived, but we kept reading on forums about how people were showing up at 4am so we pushed up the time. Then Ali started getting messages about people already on their way over so we headed over a little earlier than that.

I slept horribly the night before and the night before that thinking that I'd be late or worse yet make Ali late since I was driving.

It was 38 degrees outside. I headed out there with a long sleeved shirt, sweatshirt, pea coat, large warm blanket, my baseball cap (I didn't have a warmer hat), and luckily Ali had hand warmers to put inside my mittens. We also brought chairs so we weren't standing or sitting on the cold ground.

Some of the people there had sleeping bags that they sat in while sitting in their chairs and one person had a space heater. We really got to know a few of the people around us since we were there for almost 4 hours with them.

They opened the doors to the multi-purpose room about 630am so we were at least warmer. We received our #'s for registration and waited the final 60 minutes until receiving our packets. Because there's Transitional Kindergarten class from last year those 24 students automatically had #'s ahead of us and priority registration. There were also another 16 kids ahead of us for various reasons. I was #11 in line for Kindergarten and received #51.

We are hoping for track A (the more traditional schedule), but counting on getting another track. If we don't get Track A we're hoping for Track C. We'll know in May sometime.

The worst part is that if we don't get Track A we'll have to reschedule our vacation to Avila Beach. We are supposed to be there the first week of school for Tracks B, C & D.

The registration process went smoothly, but man was it cold outside. I survived it only to find out that I have to do it all over again in 3 years for Lila. She'll have priority registration for the track but not for AM or PM preference for Kindergarten. Who else thinks Ken needs to go for Lila?

Lila turns 2!!! (A late post)

Lila turned 2 at the beginning of December. I have neglected my blog, so I've decided in 2015 to add at least 26 blog entries or one a every 2 weeks.

For Lila's 2nd birthday the theme of her party was fairies. She had a beautiful butterfly costume with wings and tutu from her 1st birthday that still fit her so I just left out the antennae headband and it became a fairy costume. I found a banner, a door sign and wall decorations from someone on Pinterest and the rest of the food was fairy themed. You'll see from the place cards some of the names of food, but the ones I can remember are enchanted beans (jelly beans), Twigs (Pretzel sticks) and Morning dew (Water).

The party was a lot of fun and more laid back from the parties we've had in the past. I chose this year among all the craziness of the holidays to not make decorations for Lila's party. That's why I chose printables and food ideas from Pinterest. 

Here are some of the photos from her party. It's hard to believe she's already 2. Makes me want another baby, but I know it's most likely not going to happen...at all.

 Lila with Nana

 Ella & Lila

 The Perasso Family (or at least some of it)

 Opening gifts

 Big Grandma & Ken

 Lila & Azelle

 Ella & Azelle

 Morning Dew (Water)

 Nectar (Strawberry Lemonade)

 Woodland Berries

 Pixie Pillows

 Twigs & Chipmunk Chips (Banana Chips)

Thanks to everyone who came out to our new house for the party. It was so much fun hosting and having a house almost large enough to get all our guests into. Some of Lila's favorite gifts were a baby that sits on a potty and her princess castle. She also got a Frozen singing book, several clothes, dogs in a dog purse, a baby alive doll, and many more I can't think of.

Here goes blog post #1 of the year.

Hurting my wrist

I'm writing this even though I shouldn't be using my wrist.

About a month ago some how I hurt my wrist. I don't know if it was picking up a strugging Ethan or something from our move but it got worse and worse until I got to the point where I couldn't pick up a plate with my left hand without wincing in pain.

Ken insisted I go see the hand doctor and after xray (showing nothing) and an MRI we finally had an answer. I had sprained a ligament and the sheath around it was sprained as well. I'm now in a splint up to my elbow for a month and if that doesn't work I'll need surgery. As you can probably imagine using a splint isn't really easy for a mother of two and someone with two jobs requiring two hands.

I've had to take a month off working at the fabric shop and am working at a modified activity level at my nanny position. It's hard to stop myself from folding laundry, cleaning dishes, typing with two hands, etc, but I need to do it. I'm not allowed to grip or use repetitive motion with my left hand for a month up to 25% of the time. Or lift, pull, push more than 5 lbs.

It'll be a long month but hopefully the rest will do it and surgery will not be necessary. If it is then it's going to be a long journey.

I'll keep you posted.

Lila turns 21 months

Miss Lila turned 21 months old on Saturday. The time is passing far too quickly.

We've been lucky that she has held onto her morning naps and still enjoys an hour or more of nap time each morning. Lately, it doesn't happen every morning due to running errands, dropping off Ethan at school or because she just doesn't want to sleep. She happily stays in her crib talking and singing to her baby.

Lila is a dare devil and has been for quite some time. She loves climbing and jumping on the furniture. Something she learned from her big brother despite constant reminders to both of them that they will fall and get hurt.

Lila has the sweetest giggle, although sometimes this giggle is her way of convincing you that she isn't doing something she shouldn't be doing.

Lately, she's begun talking more. She now says, "tada", "What's that?", "bubba" (Ethan), and many more I can't seem to remember right now. She's a constant chatterbox and seems to not really care who she's talking to or how loud she's talking. Sounds like somebody else I know all too well.

She loves to sing wherever she is. Her favorite and the easiest song to tell and understand her while singing is "Twinkle, Twinkle, Little Star". She absolutely adores singing "The Itsy Bitsy Spider" especially with her Nana who holds a special part of her heart. Finally my mom got one grandkid to want to run to her first.

Recently, she was upgraded to her very own room and loves being able to sleep in and have quiet in her room once again. It's taken some adjustment for Ethan to get used to sleeping alone.

Did I mention how much she loves her baby, Jacob. The doll was mine when I was little. It's a big doll to lug around, but she does. She pretends to change his diaper, constantly wants us to dress and undress him, feeds him and puts him to bed while singing to him in his very own cradle. She's the best little mommy.

I can't believe she's already almost 2 and soon I'll be planning her 2nd birthday party. Stop growing Lila. Stay mommy's baby forever.

Clinic Update

Ethan went in for his quarterly CF clinic visit today. We also went to see his GI doctor.

Our first stop was seeing his GI doctor and his dietician. They spoke to me about his vitamin E levels and also his need for a medication he's been taking to decrease his liver enzymes. After discussing it with his GI doctor we decided to take Ethan off of the med for the liver enzymes for a month and have him retested in a month to see if his level increase. My concern was that if we took it him off it for more than a month that his levels would increase quickly and he'd have more liver damage. This seemed like a good compromise and made this mom feel less nervous about taking him off of the med.

We also talked about his vitamin E levels. They were elevated about two years ago. We changed some of his diet and took him off of his daily vitamin on the weekends. We decided to take him off vitamins some days because of the elevated levels/ We will have him take the vitamin 4 days a week and have him retested in a month.

The GI doctor did an exam and found that his bowels are clear and that he sounds great. No concerns from her. We will go to have another abdominal ultrasound in a year to see if the lymphnod she was concerned about initially has decreased or stayed the same. I like that it'll be a year before we have to do another abdominal ultrasound.

Next we met with his CF team. First we met with his doctor. He did an exam and again his lungs were clear and he didn't have too many cocoa puffs in his ears and nose. That's the joke the CF doc always has for Ethan. "What am I going to find in your ears?" Today Ethan's response was "Coconuts!"

We talked about his sleeps habits and if he's sleeping better. I told him that Ethan's been sleeping much better but now that we've moved he's coming into our room during the night to sleep on the ground. He promised him that he would give him 5 stickers if he stayed in his own bed tonight. We'll see if that happens. I hope it works!

Ethan saw the respiratory therapist today as well. Today was the first day Ethan got a chance to blow into the machine that shows the stats of how well you are breathing. He has a lot of work to do before we get true levels but he had fun learning. The respiratory therapist thinks he'll be good at it by spring, but for now we'll be practicing at home.

We go back in 3 months unless something happens. I left with a very tired Ethan who missed his nap because of clinic. We had a very busy day including Ethan's school in the morning and a lunch date at McDonald's just me and Ethan.