Miranda-isms

Wanted to catch some Miranda Memories.

I post more often on Facebook but captured some of my posts.

1-18-14

Miranda's phrases are a little off.

She told me she was going to "eat babies".

I said no you are going to feed babies.

She was adamant and instead of fighting I said are you giving them breakfast and she said yes, breakfast.

War of words avoided. Baby dolls getting breakfast---close call.

1-14-14

It's wonderful, fabulous and amazing that Miranda talks so much and I don't take that for granted. But if this almost two year old doesn't stop asking "what's that noise" when she fully knows it's the dogs barking out in the yard I may lose it. Sick mommy with a headache.

1-12-14

Took a shower with Miranda tonight to a) save time and b) avoid a scary end of tubby time temper tantrum like we had the other day. It was different so Miranda was interested and had fun. May not do it again though because she is intrigued by boobs and likes to pinch nipples. Funny girl.

1-3-14

Wow super cold. Miranda's first real experience with snow pants and the whole get up. When she fell she couldn't get up. "I want to stand" she squealed. So funny. Rode to school in the truck since she's too big for the sled and the street's icy and not good sled snow.

12-18-13

Cute Miranda moment of the day.

Whenever the phone rings she Yells "Mommy phone." In case I haven't heard it

So today the phone rings. She yells "Mommy phone." But i can see on call waiting its Loudoun County Schools and I tell her it's KK's school.

She goes running over to her big sis and yells "KK phone!" Fully expecting her to go get the phone.

Oh my cute baby. She loves her big sis.

11-18-13

Surprisingly good timing.

Miss M has been interested in the potty for months. She likes to sit on it for two seconds and them runs off. Tonight she wanted to sit on the potty. I said you can sit on the potty but when you get up we have to put on pjs. That kept her sitting on the potty long enough to make pee- pee. First time. Woo hoo. I'm not pushing it because I have no desire to deal with public restrooms with her but good to know she'll get there eventually.

10-8-13

Miranda amazes me daily.

The way she learns and it all just comes so easily. Her speech is off the charts. You can have a conversation with her and I think at 20 months she's supposed to be up to phrases.

She loves her sister so much which is heartwarming.

A few observations from our Family Day in Pitt.

She understands the concept of being wet---when she poured a bucket of water on the flo or at the science center and got her shoe and pant leg.

She is polite--she dropped her crayon on the floor at the restaurant and the waitress picked it up for her. She said thank you, the waitress didn't say you're welcome so she said thank you even louder until she got the appropriate response.

She's funny-- K fell asleep during dinner and M says KK sweeping. I said yes, shush. And M blurts out No Wake Her Up. KK wake up.

STXBP1 Description--The Bubble Bath

This is the first plain English description of Cailyn's genetic anomaly that I've ever seen.


STXBP1 and the bubble bath.

In order to understand the function of STXBP1, just imagine a bubble bath (on Sunday evenings, our little daughter usually has a bath, therefore, this example was obvious to me). Imagine two medium-sized bubbles floating on the water. What does it take to turn these two bubbles into one big bubble? Yes, it is quite difficult. The more you try to push them together, the more you risk generating many small bubbles rather than a single big one. For soap bubbles, this task is a bit easier, but also here you will end up with a burst bubble rather than a single big bubble in many cases. In terms of (bio)physics, the joining of bubbles is a matter of overcoming the repulsive forces when joining two lipid bilayers, i.e. it’s not natural for bubbles to join, you have to give them a push. To cut a long story short, why is this relevant for the human brain? Our synapses have the same problem thousands of times each millisecond. In order to enable synaptic transmission, we need to fuse synaptic vesicles. Each of these vesicles needs a little push to fuse with the presynaptic membrane. And STXBP1 is one of proteins providing this push.

Ticonderoga Farms

Been a while since I updated the blog but here are some pics from today's trip to the Pumpkin Fest.

On the cow train

The bouncy ride was not good for Mommy's back--trip to chiropractor on Monday.

Enjoying the fresh air.

Riding on Daddy's Shoulders

Giving KK a pumpkin

Fell asleep 5 minutes before we got home.

I Love My Tubie

I'll try to catch up on some more goings on real soon but here's an update on Cailyn's feeding.

For two months we tested out the Ng feeding tube through her nose to see if the increased fluids would help. It was much easier on all of us and we were able to get more fluids in her and do her medicine so much easier too. When it had to be replaced it was not pleasant for her and her pretty face was blocked by the tube and tape.

So on June 19 she had surgery for the G tube and she's been ok. The first 24 hours were rough, big increase in seizures and we found out Cailyn is very agitated on morphine but she's been ok since. She was released from the hospital a day sooner than we expected and has done well. She's had two follow up appointments and everyone is happy with the healing, how the tube looks and that the wound looks really good. She's in Summer School now with just a few limitations on activity and she'll go to camp next week in the afternoons too. No swimming for a month though since they don't want it submerged.

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Belly--pre-surgery--I didn't want to post a tube one until she's all healed.

I got K some new fun froggy socks while she was in the hospital.

Out and about

The past two Sundays we've been able to get out with the girls.

The first week we went to the Zoo in DC, and then yesterday, Mother's Day, we went to the Circus. Miranda's favorites at the Circus were the big Meows (tigers)

Randa Bear and Panda Bear

Papa Bear and Randa Bear

Sweet Miranda

KK and the Froggy

At the Circus

Happy Mother's Day

We got to sit in the wheelchair accessible seats which were front row--we were REALLY close to the action.  I think the elephant could have touched Miranda with his trunk with little effort.

So this happened today

We are testing out an NG feeding tube for Cailyn. She suffers often from dehydration. She also goes on drink strikes and we struggle to get enough liquid in her. We are testing this out with the possibility of putting a permanent tube in her belly surgically. The socks as mittens are to let her get used to the tube and not pull it out.

Cailyn's Crusaders--National Walk for Epilepsy 2013

Thanks for supporting Cailyn's Crusaders

 The Epilepsy Walk never fails to deliver interesting weather. This year it was pushed back 3 weeks into April and you would have sworn it was January. It's always a fun event though--seeing all the support for people like Cailyn.

With the help and support of our great friends and family, we raised more than $1500 for Epilepsy Research and Awareness. This was mine and Cailyn's 6th Walk and Miranda's 1st. Curt was sidelined and at home with kidney stones.

The route this year was different. They had a 1 mile fun walk and then a 5k walk. Aunt Danielle, with Miranda in the backpack and Katherine and Adam did the long route. After only getting three hours of sleep, after being in the ER with Curt for above mentioned Kidney Stones, I wimped out and did the 1 mile with Cailyn, Grandpa, Aunt Ma and Uncle Joe.

Very grateful to our team, especially my family who traveled from NY and FL.

Miranda probably walked 3 miles with the new monkey on her back. I swore I'd never use a baby leash, but she loved it. She was able to run and feel like she was free, but she was safe and not getting anywhere near the street.

Note the snowsuit--it was THAT cold.

Cailyn's Crusaders at the Washington Monument

Our team (l to r) Adam, Katherine, Grandpa, Uncle Joe, Aunt Ma. Bottom Me, Cailyn, Aunt Danielle and Miranda

Grandpa and Cailyn

Aunt Marilyn and Uncle Joe in front of the White House

Facebook has made me a lazy blogger

Lots to catch up on since I haven't posted since before Christmas. Both girls had Birthdays, we had many sicknesses and a hospitalization for Cailyn. I'll get updates of all that stuff up soon I hope. Here are some pics of the girls and an abbreviated update.

Happy 1st Birthday Randa Bear

I'll go back to December and January but February was a bitch, there's no better way to say it. We kicked off the month with Miranda bringing home a tummy bug from daycare. She's pictured here on her 1st birthday looking really pathetic. She had the bug about 5 days and she was a trooper. She would puke and rally. After she was done and got a drink, she'd go right back to playing.

A big concern we always have is Cailyn getting sick. She's done well in her short five years to have not really gotten much "normal" kid sick germs. This year that changed. She got the tummy bug from Miranda and they think she aspirated, inhaled some of the vomit causing an infection in her lungs. She ended up with pneumonia twice in February/March with 4 ER visits and a 2-day stint in the hospital to get stronger IV antibiotics and oxygen.

Relaxing in "my" new chair. KK now owns Daddy's Lazyboy.

She missed about 3 weeks of school in February. The one interesting thing that happened is when she started vomiting I cut non-essential meds, which included her daily Zyrtec and Miralax. I'd also read a bad article about Miralax. The guy who wrote it sounds a little whackadoo, and all Cailyn's doctors strongly disagree with what he's saying but she went from 6 seizures a day to 6 in almost 7 weeks. So for me, for now, Mirlax is one poison I won't be subjecting Miss K to.

So back to February, along with everyone in our Family, including my Mom, Sister and Katherine the babysitter getting sick and for most multiple times, Elvis decided to give me a huge scare.

Baby Elvis

On Valentine's day I came home from the office and Elvis was fine. He greeted me and was trying to get up in the big comfy chair with Katherine and Cailyn. So I walked down the street to get Miranda at daycare. Had her in her stroller coming back, stopped at the mailbox and saw Elvis sprawled out in the yard. He looked dead. I was screaming his name and no response. Ran over to him and all his legs were straight and locked and he was panting. All I could think was he had a stroke. I ran inside screaming for Curt, rushed Elvis to the emergency vet and just hoped he was ok. He couldn't stand or walk. The only other time I had to deal with a serious dog injury was when we had to put Cady to sleep. She went from healthy to gone in 3 hours. The vet did xrays and checked him out and couldn't find anything. They thought maybe he had hurt a disc in his neck. They said any other tests would start getting really expensive. He got a shot of cortisone in his neck and a few days rest and he was back to normal. We separated Elvis and Otis for about a week and they weren't allowed to play.

Limited seizures and KK is happy, alert and engaged. It's amazing what those stupid things do to her.

This is one girl who spends too much time in the doctor's office. Her favorite toy is the stethoscope.

The girls got to see Aunt Dotty last week. 93 year difference between her and Miranda

My Miranda Bunny

More to come...

But I had to share this pic of our future supermodel. She loved every minute of it.

My blog is like an unkept garden...

It's dry and dusty and has a lot of weeds. I haven't realized how busy we've been this Fall until I started looking at the blog and realizing all the things I haven't had time to post about yet.

Halloween Preview

I've been taking classes online at Media Bistro in NYC to enhance my Social Media skills. I'm learning all about the marketing uses for FB, Twitter, Linked in, Instagram, oh and my favorite, Pinterest. I've really just been using these tools, and my blog for that matter, to keep Family and friends up-to-date on our Family and mostly Cailyn's medical issues. I realized the first time she was in the hospital it was easier mentally to just put it all down in the blog and people would read as necessary. I didn't have to make 20 phone calls, rehash the non-answers we were getting from the doctors and relive the pain and tears. I try to be educational on our blog and present mostly facts, but sometimes the emotions do get the best of me. Like my previous post "Eventually she'll know."

Over the years I've shared lots of good news on our blog as well and lately I've just tried to keep up with photos and videos of the girls to satisfy "our fans" as my Dad calls them-- various people throughout our lives who care for and are concerned for my Family.

So here's a quick chronological rundown of Fall so far.

Late August

A silly squirrel chose our giant tree out front for her and her 4 children. We didn't know they were there until we found the first deceased squirrel in the yard. We weren't sure which dog got it but Elvis was the one found with the body. We soon learned that Otis was the culprit. Curt took pity on the little guys, who really shouldn't dare coming down the tree for fear of the giant black and white beast below. He began to put nuts in the tree, so the little guys could build up some strength. Not being a fan of any rodents I was not thrilled of our new "pets."

One-by-one, they started to venture into the yard, stupid little squirrels, and Otis met them with glee. I realized he was not trying to kill them. He saw them as his stuffed toys and really was just trying to pop the squeaker like he does in those. The one murder I witnessed was sad, the poor little squirrel was just left limp and breathing heavy. In the end only one survived but I think he and his kin got smart and moved.Otis earned a new nickname and Curt a new name for one of his video game characters--Otis Squirrel Killa.

September

The week of Labor Day we rented a house at the Outer Banks again. It was great fun. Cailyn's caretaker Katherine and her boyfriend Adam stayed with us for the first half of the week and then my parents came for the second.

Curt laughs at me with how much stuff I end up bringing, but a) we have to be prepared for a lot and b) Cailyn needs a lot of stuff.

Clothes, diapers, meds, special food for food allergies, wheelchair, feeding chair, a chair for the beach etc. For a family of four and 2 dogs we have the minivan packed to the brim and the carrier on top. Sue me, but where am I going to find diapers for my 45 pound girl. They don't just sell them at the grocery store. As it is we get them shipped to us from the medical supply company. It's also hard to know if the local grocery store is going to have coconut and almond dairy products because Cailyn can't have cow's milk or soy products. It's getting better to find these things, but not a guarantee and I can't take any chances. 

The trip was eventful early on as well. 

Day 1-Dogs break one of two matching glass lamps filled with seashells
Day 2-Curt loses his glasses in the ocean
then it was quiet until...
Day 5-We set up at the beach but the waves kept coming up higher. We moved back a few times, Cailyn under her sun canopy on a chair and Miranda in this cute popup play tent that contained her and didn't let her eat too much sand. Then wham, a big wave came up.

Thankfully I had just picked Cailyn up off the blanket and on a chair. She would have been covered in sand and grit and probably wrapped up in the blanket. Poor Miranda, on the other hand, was picked up by the wave and washed up the beach. My Mom, who can't swim, was the first to go running for and grab her. She swallowed some water and tumbled around a little but was ok. It took a bit to calm her down and breastfeeding at the beach was no fun. We did not stay very long that day.

After the beach we headed to Pittsburgh for a consult with THE doctor for Cailyn's visual impairment. It took 9 months to get this appointment. I called last November when I was still pregnant with Miranda and finally we got an appointment for September. She spent 2 hours with Cailyn and gave us so much good information. She wrote a great report that we'll use at her next IEP to make sure school is adapting her education environment for her.

When we came back from vacation it was determined Miranda would need to go to daycare. That's a hard bill to swallow, both financially and emotionally. I know in the end it's best for her to be with and learn from other typically developing kids. We had an issue with the first place she was going. We had worked out a part time schedule with the daycare and now they had someone who was wanting Miranda's spot but on a full-time basis. I was pissed. It was like bait and switch and I was not ok with that.

Curt and I went on a tour of another big chain daycare and we were not happy. It was like a factory and ALL the kids had the signature runny snotty nose. Miranda is a bit advanced with self-feeding and using a cup and it just seemed like that place would hold her back. As we were driving home we saw kids coming out of a house up the block. I knew it was a home daycare. I searched, aka stalked, them online and found inspection records etc. It was a legit daycare, had been in business for 15 years and had 2 long time staff members. We went for a tour. It was a little small, the kids really hung out in a big room together and Miranda would be the youngest but the owner was super nice. She's a little Persian Grandma and since we are neighbors, she gave us a really good rate. Plus they provide all of the food for Miranda and I just have to send diapers and bottles.

They LOVE her. They have nicknamed her joojoo, which we've looked up online and translated to little bird, or little chicken. Even the little kids there call her that. It's super cute and now will probably stick with all her other nicknames: Ran-Ran, Randa Bear and Miran.

October

My job is in transition right now and I'm not 100% sure how things are going to shake out. I've been the Content Manager for 53 webpages at AARP for 10 years now. We are changing the back end process so now all of my content providers will use WordPress to input their own content. It's been great because I'm becoming an expert in WordPress and I've been working with our AARP Social Media team a lot. But, this has been a huge undertaking and has required me to go in to the office a bit more lately. After a few meetings lately I'm thinking things will work out. I think I'll be able to stay pretty much in the same role I've been in but hopefully will be able to incorporate more strategy and social media work.

At the sleep study--poor girl

A few big items for Miss Cailyn and her health issues this Fall.She's now wearing a cpap machine while she sleeps and taking very high doses of iron supplements to hopefully help her extremely erradic sleep habit and obstructive sleep apnea.

Bam--+ allergy test

Then the latest addition to her allergies... dogs, cats and dust! All of which we have tons of in our house. This was a huge blow. We are not getting rid of the pets, they are family.

When I told Curt the news he said, "well I guess Cailyn's moving out," joking of course.

So we've raised her daily Zyrtec level, and are trying to take a few key steps to lower her exposure. Washing her bedding and the dogs more often and we have to move her out of a bedroom that has carpet. We've also added a hepa filter to her bedroom.

October also had Halloween, one of my favorites. I always try to be creative with the costumes for the girls.

• 2008- K was a Doctor
• 2009-K was a Mermaid
• 2010-K was Wonder Woman
• 2011-K was Dorothy
• 2012-K was Strawberry Shortcake and the Randa Bear was her little sister  Apple Dumpling

November

So now we are in November and work is still super busy. I took today off to catch up on things around the house. Top of my list was this blog entry. I'm trying to catch up and implement the social media tips and tricks for marketing I've been learning in my classes. I'm also looking into some freelance opportunities and still need to draft an Editorial Calendar for my friend and her business.

Very good news this month for Miss K... she got her bike. This process started a year and a half ago when Curt sent me the video from one of Cailyn's physical therapy sessions. I cried and vowed my kid would get her own bike, even if it did cost $6K.

Four attempts and appeals with insurance led to disappointment but I pushed on. A friend suggested submitting an application to a foundation to help out with the bike and presto... 18 months after her first bike experience Cailyn has her own snazzy, flame orange, trike.

This is really great exercise for her and a way that she can be included in play with her friends. The twins Zachary and Isabel are super excited and I'm trying to put together a party real soon.

November also marked the Lupo Family reunion. It had been 2 years since we've all been together. My Brother, Sister-in-law, niece and nephew flew East from the ABQ and my parents drove up from Florida. We rented a huge house in the woods in Berkely Springs, WV and finally got a new Family portrait. It was good to all be together and celebrate early Thanksgiving.

So that pretty much covers Fall. I'll try not to fall so behind on blog posting again. I blame Facebook, it's made me a lazy blogger. Happy Holidays everyone.