Happy 2nd Birthday Miranda Rose

Our little Randa Bear turned 2 on Sunday. The time has flown. She is a sassy, smart, loving little girl. She is tender with her sister and loves her so much. She makes me laugh almost daily with her Miranda'isms. Today's was "Oh Dear", I mean really where did that one come from?

She was running around too much at her Birthday Party so I just have a lot of blurry pics of her.

Super Cheese

Driving a car at Chuck E Cheese with Stuart Little

Not a tremendous fan of the pigtails

But loves the snow

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.

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.

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.

Eventually she'll know

I'm enjoying this time with Miranda and how much she cherishes her big sister.

The best is when Cailyn giggles and it makes Miranda giggle too. Miranda doesn't know that Cailyn's giggle is the result of a seizure, she just has joy in her heart. Some day she'll understand that Cailyn is different.

I tell my friends that their kids will be better people for being friends with someone like Cailyn and I know this too will shape Miranda and make her empathetic and accepting of people of all abilities.

Swingin' Sister

A huge plus with a Special big sister--you get to have a swing in your kitchen.

Happy Halloween

Cailyn's Costume Parade at School was big success. Miranda got to ride in the parade too.
Strawberry Shortcake and Apple Dumpling

 

 

Miranda Update

Miranda is 8 months old now. About 2 weeks ago she learned to clap hands, super cute and she's so proud.

5 months old

Miranda is patriotic for this month's photos... Red, White and Blue. She's made some big progress over the last month. She's semi-sitting, she found and likes to chew on her feet. She's very gabby. She also started solid food this month. She's very advanced with head and trunk control and the pediatrician said we were free to start food whenever we wanted. We are going super slow in introducing foods. I'm hoping we have NO FOOD ALLERGIES, like poor Cailyn. So far she's done rice cereal, carrots, sweet potatoes and peas.

Mommy's Damn sign tastes good.

Miranda's First Food

4-Months Old

Our Girl is 4- months old now. She's chatty, grabby and too cute. She wants to stand all the time, likes the exersaucer and bumbo seat and despite a few nights of waking up due to a growth spurt is still sleeping through the night pretty consistently.

A bad blogger--catching up

I have been a very bad blogger and there’s a lot to cover. I'm sure I left out stuff too. I still need to post more about the christening and M's 4 month photo shoot.

So here goes....

First and usually top of mind here is HEALTH.

Miranda’s been doing great. She is so strong and it’s amazing how everything just comes easily. Last week she “found” her feet, but kept losing them after she grabbed on. She has excellent head control and has been sitting in the exersaucer already and enjoying that a great deal. She can entertain herself quite well.

The dogs are definitely going to be in trouble though once she gets going. Already she gets a good grip of fur and holds on. She reaches for them with a “here doggie, doggie” look on her face. Otis, with his black and white coat is very stimulating for her as well. I think we've resolved the issue with my Milk supply so breastfeeding is going better this week.

Cailyn’s had a bit of ups and downs lately. She is a strong girl who is definitely growing. She’s gained 5 pounds in 2.5 months, which is good and bad. She was ok with her weight before, 50th percentile and a little extra will help keep her strong. The bad is if she continues to gain this much. She’s 40 pounds now. Go to the grocery store and pick up a 40 pound bag of dog food and tell me how easy that is.

Her eating and her food content has not changed so it leads me to believe that this is a side effect of medicine. She has also been EXTREMELY sleepy lately. She has 3 more days of school and she’s been sleeping through the majority if not all of the day for probably a month and a half.

Then Friday and Saturday she decided not to take a nap at all. Sunday at Miranda’s Christening she was sacked out, hard, no waking her up.

 In March and April Cailyn’s seizures were horrible. She had so many and was just miserable and not herself. May 1 we started giving her Zyrtec for possible seasonal allergies and she’s been aces since. The last tonic seizure I saw was May 3. Six friggin’ ninety-nine bottle of Zyrtec does what hundreds of dollars of seizure meds can’t. Oh, so annoying. But my Girl is doing well. More awake and alert and she’s giggling again. Woo-hoo

In April we surprised my Mom and me, Cailyn, Miranda and Aunt Danielle, hopped a plane to Tampa for a short-fun weekend before my return to work. Well it didn’t go as planned. Cailyn’s seizures were getting progressively worse all week. She was barely waking up to eat and seizing all the time. We ended up in the Emergency Room and getting admitted at All Children’s Hospital in St. Petersburg FL.

So our fun weekend with Grandma and Grandpa ended up in the hospital, with my Mom and Danielle staying with Miranda at the Ronald McDonald House because the little one was not allowed on the ICU floor. Grandma and Grandpa’s house is a good hour away from the hospital. Let me also say, that Cailyn hasn’t been in the hospital for 3 years.

There is little they can do for her seizures anyway so unless she were really sick it’s not usually a big help. I haven’t felt the need for her to be admitted either. We can handle the seizures at home for the most part. But this time was bad. While she was in the hospital, she had 19 seizures in 24 hours, all while hooked up to the EEG. It was all recorded, so we got some good information.

We also met an AWESOME neurologist and got a second opinion, something I’d been thinking about for a while. Dr. Winesett may be getting a visit from us when we go to FL for Christmas. He was intrigued to meet K too. He was very surprised with her genetics diagnosis. He was under the impression that STXBP1 was only the case in kids with an abnormal MRI and Cailyn’s is fine. So now he’s rethinking running the test on some of his patients.

I learned a lot as well. It was like a really good science class, not an arrogant doctor talking AT a neurotic Mom. Right before Cailyn was released from the hospital, he sat with me for 30 minutes. He made some recommendations on the meds changes and was pushing strongly for her to get the VNS-seizure pacemaker. He also pulled up the video on the EEG and showed me that Cailyn’s brain is always seizing, which we knew, subclinical seizures they call them. Her brainwaves are all kind of squiggly and the screen is overrun with black wavy lines, but when she has a tonic seizure, her brainwaves flatten out and look more like a normal brain. How the heck do you process that.

Shush, KK is sleeping.

Let's make like a bird and get the Flock outta here...

All wrapped up with no place to go.

Two days after returning to VA, I had to start work and let me tell you IT SUCKS. Yes I want to spend time with my girls. I need to be here for them and in case K has an emergency or a doctor appointment or for a million other reasons. Then on day 2 back at work, they tell me my job is changing and I’m not going to be able to be a full time teleworker anymore. Those of you who know Cailyn’s whole story know that the only way I’ve been able to work this long is because I’ve been a teleworker and have a great flexibility at my job. I’m still not sure what I’m going to do. We are trying to figure things out, finances etc. but it comes down to we need my income to keep the house and I provide the health insurance. I’m still doing my home visits but that is not going to bring in enough money to replace my salary. UGH Sucky choices.

3 Months Old

Miranda is 3 months old now. She is cute, cuddly and a super sleeper. She is strong, has great head control and loves to stand. She has smiles for everyone.