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Preview: The Love Family

A Life Full of Love

Updated: 2014-10-04T19:39:53.846-07:00


Where the heck did February and March go!?


So I honestly intended to be a better blogger. So much for that! I feel like I posted just the other day and it was 2 months ago! Luckily, not too much has changed. Good for our family, since change usually means worse. Andy did have a couple of hospital stays over the last 2 months, but did great. He caught RSV and a bad Roto virus, along with the rest of the family. It was a yucky couple of weeks! He's actually back down pretty low on his O2, already and we're hoping if we take it easy he can be off by Easter. The kid needs to hunt eggs without a hose attached! His sisters don't baby him! He needs every advantage he can get! :) We are starting to get things cleaned out and packed up. If all goes well, we should be moving in about 5 weeks. I'm pretty darned amazed at how much stuff we've managed to cram into this small place! I"m actually a bit impressed with us right now. ;) All in all, the preparation is going about as well as one could expect, being that there are 3 crazy kids running around here and one of them insists on going to the hospital every 2 weeks :)Spring Break came and went without too much excitement (other than 3 black eyes-Cammie, Andy and my niece, Maty). We mostly just lay around the house, enjoying lots of lazy time. We booked a condo at the beach for later in the summer. We'll do something fun when we're sure Mr Man is doing well enough to enjoy it too.Cookie baking funS'mores TimeAndy playing with his budCam's black eye- she ran into a door knobAndy's black eye- he was laughing and threw himself forward into the corner of the train table :P[...]

Bad Blogger!


wow..its really how sad how long I've been going between posts!The whole family is doing great right now! Andy has been home from the hospital and feeling super terrific for a month now! He is still on every two week steroid infusions and seems to be adjusting to them well. He started taking oral steroids every other day and gained 2 pounds in 2 weeks! We really do have a chunky monkey now! He is starting an oral chemotherapy medicine this week. We have read some good things about the meds and his disease and are hopeful that it will force everything into remission. It should definitely help get him off of these crazy high dose, frequent steroid infusions! We are all happily enjoying hermit time, since the little man is pretty much housebound during the rest of cold and flu season. We did get out to the zoo the other day and everyone had a blast! It had been so long since we had been anywhere and the weather was beautiful! Other than that, we have all just been slowly cleaning out the house, getting ready to move in the next few months. Luckily, we are moving right next door so we don't have to fully pack everything! :) The girls are having a good time picking out new bedroom stuff (they will finally be in their own rooms!) and I've been trying not to make Daddy too crazy talking about moving. I'm a bit excited to finally have more room :)[...]

And the Christmas countdown begins!


We had a very nice Thanksgiving this year! Thanks to Aunt Linda, Aunt Martha and Nana for all the wonderful cooking and for putting up with us and our crazy kids for a whole afternoon! :) My friend and I woke up at a scary early hour (4am!) to head out for some shopping on Friday. We really didn't NEED anything. We just decided to torture ourselves with too little sleep and crowds. It actually ended up being really fun and we both found some good deals and I was able to finish the last little bit of my Christmas shopping. It was nice to get out and wander around stores with no kiddos for a while. :) Saturday, we had our annual Johnson City Christmas lights parade and after party night. We're still recovering and there may be a few embarrassing Xbox Kinect dance game videos of all of us floating around the internet somewhere. In between all the fun, we managed to get our tree up and decorated and our Christmas card picture taken. We are all so excited about Christmas being so close! Love this time of the year!!

Where to start....


We have had a busy month and a half! Andy ended up going back to the hospital 16 days after his last pneumonia stay. This time, it was the bleeding and no pneumonia. We had them place his port in his chest before we went home and have started doing 3 day steroid infusions, every two weeks. We are on day 2 of the first go around. Its been a little hectic, but we're working on smoothing things out. Andy is the first patient at Dell Childrens' Hospital to have regularly scheduled pulse steroids for idiopathic pulmonary hemmhoraging. Lucky him. :) This fun little tidbit means that the hospital has no set protocol for scheduling the infusions. This week, we are checking in to the hospital for a few hours each morning and checking out after his steroids are in and he has been observed for an hour. Not ideal. We talked to the docs and by the next course, we will be going across the parking lot to the childrens' blood and cancer center for his infusions. Its a little less hectic there, as it is like a regular doctors office with extras. We already see Andy's hematologist there, so we're familar with the procedures and such. Right now, Andy is on an extremely high dose of steroids with each infusion course. The next step will be getting him on a really good anti inflammatory medication so they can begin backing off on the steroids. The new doctor with our pulmonology group has seen this combination of steroids and meds yield great results with lower side effects. Good news for us!

Life for the rest of the family has been pretty calm. Jordan lost her second front tooth and is now being tormented by Mommy singing "All I Want For Christmas Are My 2 front Teeth" everytime she walks by. She complains, but i'm sure deep down she loves it! :) She seems to be enjoying 2nd grade, but is already counting down the days until summer vacation :) Cammie is doing great in her first year at the "big" school. She loves her teacher and the feeling is completely mutual. She had nothing but good things to say during our conference. I must admit that i had to ask her a couple of times if she was sure she had wanted to talk to Camryn Love's mom. :) I'm happy to see that she is so well behaved in the real world :) Both girls are bouncing off the walls excited about their joint birthday party this weekend. A building full of bounce houses, sugar and a ton of kids...should be a blast! Ray has been busy at work, and i have been busy playing the drive back and forth game. We are all really looking forward to some much needed time off at Thanksgiving!

Just Pneumonia


Do you ever think about the things you've said during the course of a day and wonder if people think you're a little off? :) As most of you already know, Andy had another hospital stay. Much shorter than the last three, thank goodness! I was sitting in the ER with the little man, waiting for them to get a room ready for us and realized that the nurse was looking at me very strangely. I was on the phone a few times with different family memebers and friends while she was in the room getting things together. She finally asked me if Andy gets sick often. I explained his issues to her and that we are a "frequent flyer" at the hospital. She started to laugh and said "that makes sense!" I asked her what she was talking about and she said she had been surprised by how calmly and almost happily I would tell someone that yes, Andy is sick, but its just pneumonia! It made me think back to his last cardiology appt when his doctor laughed at me for wanting a "normal" week or two long hospital visit. Makes me laugh. Our normal is a little crazy, but we'll take it over what we've had to deal with the last year!

The man is feeling very good now. The steroids really do seem to make a difference. As soon as he was given the 3 day course he started to improve very quickly. We have pretty well decided that its time to have a chest port put in and start going in for monthly infusions. We aren't going to take the chance that his medication will keep him well. At this point the good outweighs the bad when it comes to steroids. His body is harming itself more than the steroids will. We see his pulmonologist on friday and I will let everyone know all the final decisions and plans.



Monday was the first day of school for the girls. Jordan is the second grade (when did THAT happen??!!) and Cammie started Pre K at the elementary school. I'm so excited that our elementary introduced an all day, open enrollment Pre K! Camryn misses the age cutoff for school by less than two months and she is so ready to be at school! The girls had a great first day after a bit of a rocky start. The parking lot and drives were CRAZY yesterday morning. We ended up having to park down the street and walk the kids to the school to drop them off. For those of you who haven't been to our school, thats not an easy task. There are no sidewalks around the school and the road is tiny! The parking is very limited because of its location. All of the parking spots are along the front of the building, where people are driving through to drop kids off curb side. Its very difficult to get out of those spots if you choose to walk your kids in or are walking in to pick them up after school. hopefully it will all get worked out soon. I've scoped out the area and have a plan for this afternoon so I don't get stuck in my parking spot for 30 min AFTER I pick up the girls. Again. :P
Andy started his home-bound PPCD class today. The teacher, speech and occupational therapists are all very nice! I'm hoping, in time, Andy will come to see that as well. Today, he was less than thrilled with them. My normally very outgoing little man is out at the moment and Cranky M'Gee has stepped in to take his place. We are anxiously awaiting the return of Andy. :) He loosened up a little towards the end of the session and i'm hoping as he gets used to our new early bird schedule things will improve.
As for Mommy and Daddy, we are happy to have things started and our new schedule all worked out. We tried hard to get a lot of projects done before school started and managed to accomplish quite a bit. Our deck is stained. We painted kitchen cabinets an walls and are now stuck with no door/drawer pulls until we can make a decision :) All in all, its very nice to have a very clean house, one kiddo at home and time to work on scrapbooks. Maybe I'll manage to catch up on the last couple of years in pictures. Or maybe I'll go play World of Warcraft while Andy naps ;)

The Beach


We were finally able to take the kiddos to the beach this summer! Everyone had a great time! Andy was crazy about the water and had a blast throwing toys into the surf and watching them wash back up. Cammie was all over! She tried catching fish in buckets, dug for clams and searched for jellyfish. Jordan spent nearly the whole trip searching for sea life and shells. She wandered up and down the beach for hours at a time. I've never been much of a beach-goer, but I loved being there with the kids! We can't wait to go again next summer! [...]

Summer fun


We've been having a great, very busy summer! Andy had an awesome birthday at a fun little water park and then a big swimming birthday party with all of his friends and family two weeks later :) Our 4th of July was awesome and all the kiddos went NUTS over the fireworks! Here's a few pics from Andy's birthday. More to follow later, but right now my uploader won't let me load and i don't have time to mess around with it. We are finishing getting the car loaded to go on vacation tomorrow! First time in 3 years! Andy is doing so well right now-we actually get to go somewhere! We'll be at the beach for 5 days so I'm sure there will be lots of new pics to post next week![...]

We finally have a diagnosis!


Lots of news in the last month! Andy had to go back to the hospital a few weeks ago. From the start it was a much easier stay than we've had in almost a year. He had the beginnings of pneumonia, but his oxygen levels were still high. We went to a regular room not ICU! While we were there, we were told that his lung biopsy report had come back from Texas Childrens' Hospital and he is having bleeding in his lungs. This is what everyone has suspected from early on, but could not find eveidence of. They started him on a very high dose steroid and it seemed to help. We will be having a long term IV port placed in his chest and he will be going in once a month, three days in a row to have a pulse steroid infusion. This treatment should help control the inflamation and bleeding in his lungs and give him time to grow and get over some of these issues. We are so relieved to have some answers! We are trying to stay realistic and not get our hopes to high, but we all feel very optomitic about the future!! Right now, Andy is doing so well! I can't remember the last time he looked as overall healthy as he does right now!

Busy Summer


I am so ready for summer vacation! I thought that once I left school, I'd never again long for summer vacation. Yet, here I sit, marking big blue Xs on our family appt calendar slowly counting down to the big circles at the end of the month. :) Cammie's last day is May 27th and Jordan's is June 3rd. We're almost there! Our summer fun starts right after school ends. We're heading to the beach on June 5th to spend most of the week before we head back here to grab fresh clothes and head off to san Antonio for a River Walk weekend and a first birthday party at the zoo with our friends. Andy's 3rd Birthday Circus Extravaganza will be July 3rd and then we are big plans free until just before school starts. We've decided to combat the inevitable summer crankiness and boredom by having an activity theme each week. We are making boxes full of themed art projects, books, toys and such and will try to plan a little related "fieldtrip" with Daddy each Saturday. We jokingly call it Camp Allthekidsgottagetalong. :) Maybe this year i won't be praying for school to start at the beginning of July. ;)

Enjoying the little things


Andy has been home from the hospital for 2 weeks now. It seems like much longer. We've squeezed a lot into those 2 weeks! We've been working really hard to enjoy every bit of time we have together. It was hard for me to write about before now, but we nearly lost Andy during this last stay. On the Thursday before Easter, the on call pulmonologist, our ICU doctor and the ICU resident working with Andy took us for a care conference. We thought we would be sitting down to discuss different plans of treatment. We were wrong. The pulmonologist told us that Andy's health was rapidly declining and there was nothing more they could do for him. His CO2 levels were climbing to a very dangerous level and they did not expect him to make it much longer. He asked us to make a decision about what to do for Andy's last days. We were crushed. After we cried for what seemed like hours, we pulled ourselves together and went to pick our girls up from the playroom. We decided we would take Andy home, on whatever equipment and support was necessary and spend the time we had left loving him and being together. We knew it would be the hardest thing we'd ever have to do, but we promised ourselves that we would keep a positive attitude. Andy deserved nothing less than for us to not mourn him before he was gone. We went back to the hospital on friday morning and Andy was starting to wake up. His CO2 levels were down a little. They slowly crept down all that day and by Saturday, were looking better. Easter Sunday, the doctors were amazed to walk in his room and find him on a regular oxygen canula, eating and playing on the floor with his sisters. His CO2 levels were back to normal. No one had a medical reason for his turn around. We told him our little man is a fighter and isn't going down until he's ready! The 24 hours when we thought we would lose him were the worst of our lives, but it left us with something important. We have a new appreciation of our time together. We've always been very family oriented, but its so much more now. We enjoy every moment with each other like its our last, because it very well could be. Things that bothered me before all of this just don't seem to matter anymore. We are living for each day and enjoying all the little things.



Where to start...
We're still at the hospital. Day 28 or 29. Started to lose count. I wouldn't be surprised if its another month before we are able to come home. Andy was intubated for almost 4 weeks and was finally able to come off od the vent last Friday. He wasn't able to handle it well, and is on a biPAP machine now. He has a mask on his face and some crazy headgear to hold it on. He's having trouble keeping his CO2 levels down. They've been very high, even on the bipap and until they start coming down, we're stuck. He has to be sedated, not as much as he was on the vent, but sedated. With the stay looking as long as it is, I've started coming home a little more. We always try to keep Ray working as much as possible, so I stay at the hospital while he works and plays Super Dad at home. He and the girls have been coming into town each weekend and its getting tiring. I'm spending the nights at home this week so I can help him catch up on housework and such. Its very hard for me to leave Andy, but I know he is in great hands with the nurses in the ICU. Most of them are almost as crazy about him as we are :) If we are going to make it through these crazy visits, we have to try to balance things a little better. Especially when the little man is sedated. We are having a care conference with all of his doctors on Thursday and hopefully we will have a plan and maybe a few answers. For now, I'm going to just enjoy some time with the girlies and call up to the hospital about once an hour tonight :)



Andy's bronch went well. They found out that he isn't bleeding in his lungs, which is good. They did find that he has a pretty signifigant bronchial caste. This is a very thick music plug that can actually spread throughout the branches of airways in the lung. The doctor is often able to suction it out during a bronch, but Andy's proved to be very firmly attatched. He's going to begin a new inhaler med that will help break it up and he will have to cough it out himself. Right now, they are not sure as to why he is developing these castes, but they believe it is why he is getting as sick as he is. The doctors are going to powwow and decide on a treatment course. It may be coming in to the hospital for a day each month to receive a special inhaler med that insurances do not allw to be administered at home. Hopefully this is the cause of all of his recent problems and will be able to be controlled. For now, he is still on the breathing tube and we will hear later if they want to do a lung biopsy or not. As so many things with Andy are, this condition is actually fairly rare and doesn't have a cut and dried treatment or preventative. I have faith that the doctors are doing everything they can and will find the right treatment path.

This is a picture of a pretty severe caste. Andy's is no where near this large and is only in one small section of his airway. Looking at this you can see why it could be so dangerous if left untreated. It could make a lung virtually useless.



I should have posted before now. About anything. I can't belive its been almost a month and I'm posting a back in the hospital message after a going home from the hospital message.
We had to take Andy to the ER last night. He seemed to be getting a cold over the weekend, no big deal. Yesterday, he went down hill. Labored breathing, lethargic, not eating or drinking. Apparently even a little cold was too much for his body to deal with. His Xrays look horrible. They started him on a bi-pap mask and it just wasn't enough. They had to fully sedate him and put in a breathing tube this morning. Its so hard seeing him out like that. There are so many tubes running from his little body right now. He's having a bronchoscopy tomorrow to see if he's having any bleeding in his lungs and he will probably have another lung biopsy done in the next week or so. The pulmonologist is hopeful that we will be able to start a steroid therapy that will help him recover more quickly this time. Maybe we won't have to be here for a month again. I just can't believe we're back her at all. Its way too soon. Hopefully something will turn up this visit that can help us keep him healthy in the future.

Finally Home


Mr. Man was discharged from the hospital last Saturday. Finally!! He's been doing well. He is still needing quite a bit of oxygen, but over all seems to feel good. We've been getting settled back in and are really looking forward to our first full weekend home together in a very long while!

Andy Update


Mr Man is out and doing great!!! His heart cath had great results!! Pulmonary Hypertension is not a problem and there will be no need for sugeries in the future! He will be weaning off of his meds for the sspected pulmonary hypertension sometime in the future. He was able to have the breathing tube taken out right away and did not need to go back on the Nitric Oxide. We should move from ICU back to IMC tonight or in the morning and start weaning down O2 to go home next week!



Just dropped the big man off for his heart cath. I'm sure everything will be fine, but it was so hard to hand him over to someone and leave! He should be out in about 2 hours. My stomache is doing flips.

Andy News


We have been at the hospital for 27 days now. 27!! Crazy. Andy is finally recovering from this awful round of pneumonia and is well enough to go under anesthesia. His doctors sent samples from his lung biopsy in 2008 to the Mayo Clinic and they now fear that he has an issue in his lungs that could be getting worse due to the meds he's on for pulmonary hypertension. He's going in at 8am tomorrow for a heart catheterization to determine what needs to be done next. He will also be having a bone marrow biopsy done at the same time, to get a better idea of why his platelettes drop so drastically when he's ill. We're nervous, of course but anxious to see if there's anything we can be doing to keep him well. His cardiologist isn't on call, but is going to come in to do the procedure himself. I'm very happy to have him. He's been with us the longest of all Andy's doctors and I've always trusted him completely. We're disappointed to have to be here longer, the girls are taking my absense badly, but hopefully this will be the last stay for a very long while. Keep Mr. man in your thoughts and prayers tomorrow!

Here's some info on the heart cath:

Cardiac catheterization (KATH-e-ter-i-ZA-shun) is a medical procedure used to diagnose and treat certain heart conditions.
A long, thin, flexible tube called a catheter is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart. Through the catheter, doctors can do diagnostic tests and treatments on your heart.
For example, your doctor may put a special dye in the catheter. This dye will flow through your bloodstream to your heart. Once the dye reaches your heart, it will make the inside of your coronary (heart) arteries show up on an x ray. This test is called
coronary angiography (an-jee-OG-ra-fee).
The dye can show whether a substance called plaque (plak) has narrowed or blocked any of your coronary arteries. Plaque is made up of fat, cholesterol, calcium, and other substances found in your blood.
Plaque narrows the inside of the arteries and, in time, may restrict blood flow to your heart. When plaque builds up in the coronary arteries, the condition is called
coronary heart disease (CHD) or coronary artery disease.
Blockages in the coronary arteries also can be seen using ultrasound during cardiac catheterization. Ultrasound uses sound waves to create detailed pictures of the heart's blood vessels.
Doctors may take samples of blood and heart muscle during cardiac catheterization and do minor heart surgery.
Cardiologists (heart specialists) usually do cardiac catheterization in a hospital. You're awake during the procedure, and it causes little to no pain. However, you may feel some soreness in the blood vessel where the catheter was inserted. Cardiac catheterization rarely causes serious complications.

Andy Update


The little man has been up and down all week. Good days and bad days, with no clear signs as to WHY they are good or bad. Today he's doing relatively well. If all keeps going well, he will be put under anesthesia sometime next week to have a bronchoscopy (basically exploratory look at his lungs) and he will have a sample of bone marrow taken. His platelettes have just been too erratic to not check into a possible problem with his marrow. We are taking everything one day at a time and really don't have an end in sight yet. I can't imagine going home before the end of next week, and honestly even that seems to be more of a hopeful thought than reality. Andy IS starting to perk up a bit and as usual his appetite remains excellent! We are thankful for the small things :)

Andy's starting to feel better, but now I'm sick...sick of turkey, that is!


Talked to Ray today and Andy is really starting to perk up! He's much happier and the drs were very impressed with how much he improved over night. The RTs are working down his O2 and hopefully he'll be off the high flow soon.

We had planned to have a nice big turkey and dressing dinner tonight. Uncle Wayne, Uncle Ronny, Aunt Tina and Maty were going to come over and we were going to have our Christmas together. Plans changed with Mr. Man being in the hospital and we decided to reschedule. Unfortunately, I had a thawed and ready to brine 22 pound turkey in my fridge. I decided to go ahead and cook it and make some turkey meals for ray and the girls while I'm gone next week. Today I roasted a turkey, deboned it, made two turkey potpies (one for fridge, one for freezer) and am about to start on two or three pans of turkey tetrezinni. I am no longer a fan of turkey. I never thought the day would come. I'm one of those people who can eat turkey and dressing once a month. Having to spend several hours laboring over turkey meals has changed that. No one should have to look at turkey for as long as I have today. Suddenly, I'm glad Thanksgiving is almost a whole year away. :)

Another Hospital Stay


We had to take Andy to the hospital on Tuesday night. It looked like he had a respiratory infection that was triggering his asthma. He seemed to be improving and I left him with Daddy last night to come home and get some sleep. Ray called me this morning to let me know that around midnight they had to move him from IMC to ICU and that he was no longer responding to treatments. Looks like we're in for a long stay after all. We are going to talk to the dr today aboput doing a bronchioloscopy to see what the heck is going on down in those lungs of his. Hopefully something will turn up this visit. We'll let everyone know how things go.

Merry Christmas!!


I've been a bad blogger. Its pretty bad when the Hubs has to tell me to update the blog. He says he misses reading about his own life when he signs onto the internet :) Its just been busy, but not quite noteworthy busy until recently. Now I have a picture overload to catch everyone up! The kiddos and I have had a great Christmas break so far. We hit the zoo on monday. 3 Mamas and 9 kids and we survived! Didn't even lose a munchkin this trip! It was actually a perfect day! 65 degrees and hardly any people. No crowds or lines and happy little faces the entire time. We only had tho threaten to feed them to the hippos a couple of times! :) We spent Christmas Eve making the rounds to visit family. We spent several hours at Meme and Uncle Lee's. It was really nice getting to visit with them, Kevin and Michael. Its been too long! The kids left there happy as could be, loaded down with so many presents it looked like santa had already visited! They are loving all their awesome new craft toys and the giant dinosaur the Cammie received is a big hit with all! We had dinner with Uncle Wayne and played with his awesome presents last night. We had to reschedule with Uncle Ronny, Aunt Tina and Maty for next weekend because poor little Mumu is sick. They didn't want to chance giving Mr. man anything that could turn into a respiratory problem. Our Christmas morning was perfect. The kids slept late and we actually had to wake the girls up at 8am! Santa was good to the girls and brought them both Nintendo DSis. We've all been playing with those! :) Andy has some new, very cool playsets that the girls are playing with while he naps :) We opened presents slowly, one at a time and I'm so proud of the kids for being so patient! It took us nearly 3 hours to remove all the new stuff from boxes, find a home for it and get it all organized. I'm happy to say that the girls have enough new craft stuff to never be bored again..whoohoo!!! We decided to postpone our big Christmas dinner until we have everone over next weekend, so this afternoon has been nice and lazy. Hope everyone else had a wonderful Christmas!!Wimberly Trail of Lights San Antonio Zoo Christmas EveHangin' with Meme's bird "Foo"Mrs. Clause brought new jammies for Christmas Eve! Sneaky lady always slips them under the tree when we're not looking ;)Santa came and left bags of presents!Goodie filled stockings! Thanks Santa!!very excited about spotting her new DSi!Daddy's new snuggie :)Cammie's present mountainThe kiddos made me a picture collage cup with the title "Mama's Minnions" :)daddy was excited about the tool set the kids gave him :)Thanks Auntie Cari!After the tornadoHungry Hungry Hippos!![...]

Jojos first Karate Tournament


Jordan took first place!! Ok, so it was for either 1st or 2nd place, but she won! She did very well and beat her sparring partner with 3-2 points. She was very excited and so were we! It was a lot of fun sitting up there cheering for our daughters first competition! She is doing so well in Karate! She is very focused and really works hard to learn everything. She should be testing for her yellow belt in 2 weeks!

Trick or Treating!


Halloween was awesome this year!! We went out with some friends and all of their kiddos. We loaded a trailer with hay bales and drove around a couple of neighborhoods. New tradition!! The kids had a blast and so did the parents (especially the moms!) :)80's MommyOh so scary when the 3 of us get together! Baby Humpty Dumpty LoganPretty little Maty Uncle Ronny trying to play it cool.. :)Undead Uncle CurtisAuntie Tina in her stinking adorable Rodeo Clown costume80's ladies :)Has been 80s Rocker and his gnome :)Oh yah..we're hot :)[...]

Halloween costumes


Had to get the camera out and take some pictures of my kiddos in their costumes. It was a very pretty day and I was avoiding housework :)Jordan is a Spanish Dancer Andy the Gnome Cammie the Butterfly[...]