Life with Allison

Our family's journey with a special needs child

Getting to know each other

Its been a while since my last update. Shame on me, but life has been pretty busy here lately. I know, I know. Lame excuse. Everyone uses that when they don’t get around to something. Ok, on with our news.

Its been a little over 2 months home with our furry friend, Periwinkle and its been a wonderful 2 months at that! Watching Allison and Perry grow their bond together has been such an amazing sight. Its crazy how far they have come in such a short amount of time.

We are to the point now that Perry definitely takes note of Ally where ever she is. We’ve noticed that when Ally decides to go to the basement  (that’s the toy room), Perry will go down to scope things out then lay at the top of the stairs where she can hear her. And she will stay there till Ally comes upstairs. If Perry is in the living room sleeping or playing, and Ally walks thru, Perry ALWAYS stops what she’s doing to watch her. I’d say 50% of the time, she will even get up to follow her to see where Ally is headed. The lay together a lot. Perry will grab her Kong and lay next to Ally on the floor and then usually Ally ends up wiggling over to rest her head on Perry’s side.  They are the cutest thing to watch!

Ally has recently started to actually try to play with Perry. She will go pick up Perry’s toy and bring it to her. I can now, give Ally treats to feed Perry. It used to be I’d have to do a hand-over-hand to get Ally to give it to Perry, but now she will reach out, take the treat, and give it to her all on her own. Ally gets to give Perry whole treats, lots of treats, and peanut butter. Perry says ‘mmm’! Well, not really. More like air being inhaled quickly as she gulps down whatever tasty morsel Ally offers……or drops . 🙂 No wonder that dog follows her so much!

The tethering has been way awesome! We use it most nights that haven’t been too cool to take Ally out. My husband likes to sit outside and takes the 2 of them out for fresh air and a walk. We went to our local downtown trick or treating at the stores yesterday. Walked for 40 minutes and Ally never once asked to be picked up! A-mazing!! Perry did great with the crowd, candy and kids. A photographer had to stop and take a picture of Ally and Perry walking so I’ll be keeping an eye out in the newspaper for their picture.

Found out last night that Perry has a new skill set that 4 Paws forgot to tell us about…..she’s a physical therapist! LOL! Perry was ‘chasing’ her last night thru the house and Ally RAN! Like a real run. For the first time. EVER. She’s been able to do this staggering, drunk looking quick walk, but what I’m talking about is a true 6 year old run. Strong, long strides and all! They’d run from the living room to Ally’s bedroom and back. Over and over and over. I wish I had videoed it. We were sure if she would ever have a steady of enough gait to do it. Can’t tell I’m impressed, proud or excited, eh??? :):):)

The seizure work. I’m sure you are curious about how that’s going, since it is the reason we started out on the journey for Perry. Well, Ally has been having seizures about every third night for the past 2 months. That’s a lot more than we originally thought. We had her sleep with either her dad or I for awhile with Perry to try and track how they were doing seizure-wise and alerting-wise.  After that, Ally and Perry went back to their own room to practice together. Not so good unfortunately. I started noticing Ally would have seizures and Perry never barked. Then it got a little difficult to get Perry to go to bed with Ally. She would be hesitant about going in there but ultimately did because I told her to. Then last week, I woke to hearing Ally moving around her room. I thought she had just woke up and was doing this stomping stimming thing she does, but that wasn’t it at all. She was on the floor, half under bed, trapped by the metal framework of her bed and the trundle (that has no mattress on it), having a big convulsive seizure. She had thrown herself around so much, it left bruises on her arms. 😦 And Perry, well, Perry was terrified! Poor dog had her head bowed, tail tucked and when Ally was done seizing and I asked Perry to get in the bed….she bolted out the door!! It was pretty discouraging.

But nothing a simple phone call to her trainer can’t fix! They explained that the real life situation is much different from our practice sessions for the dogs. Our practice sessions, there’s lots of different people involved, treats, praise and all around fun! The real life situation is totally opposite. Perry can smell stress, anxiety, tension. She’s alone with her girl that she knows something is wrong but doesn’t know what. Her girl is acting weird, family is rushing in and its not what we practice. So its super scary for her right now. She needs a little time to realize that Ally is still Ally when its all over. Right now, she’s not sure what to think. So the trainer assured me that give her some time, and she will come around. We just keep practicing and Perry will probably be fine with it once she sees its all gonna be ok. I mean, she is an animal, not a machine so she needs adjust time too. This is the part 4 Paws could train for her. Only Ally and her can find this together, so we will keep on what we are doing and help them both. Oh, and we had to up Ally’s meds.

All our lives have flipped since receiving Perry. She affects us all. She is so loving and sweet. One of the 4 Paws staff was sad to see Perry go and said ‘She never let you have a bad day’. And that’s absolutely true. 🙂

 

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Training Day 7: Grooming and more

 

They days are feeling longer. Feeling like we are starting to hit information overload.

We did another outdoor track, this time across pavement and cement.  I walked away with Ally and Joe tracked us with Perry. She struggled over one area that another kid from our group had sat in for quite a while.  Time will resolve this. The only reason it was a struggle is because the dogs are trying to memorize their kid’s scent. Once they do this, it will be almost impossible for the dogs not to find their kids.

This afternoon we talked about grooming and appropriate and not appropriate toys. Found out I’ll need a third brush (or rather, rake) for Perry. I’d really like to bathe and groom her but I need to wait till her hot spot is fully healed, which stinks because she rolled in mud today! At least the slicker brush took out most of it.

Inappropriate toys include rawhides, anything small enough to swallow, anything made from real animals such as pig ears, and no real animal bones. Rawhides are leather and when a dog can’t find their rawhide bone, they will try to find something else with the same scent, including, belts, shoes, or furniture. To the dog, leather smells like leather, no matter what is shaped like.  Also, rawhide is NOT digestible. Real animal products can encourage some natural instincts that we would really not have. Not that the trainers think our dogs would do this because of all the training that goes into them and how much they’ve been worked with, but it’s better to never tempt fate. Real bones splinter easy, some more than others. Chicken bones especially splinter easy and this can cause a major problem for the dogs intestines….if it hasn’t caused a problem before then.

I’ve been getting tired pretty fast in the evenings. Its hard to come back to the hotel, get dinner, let the children get their exercise, walk the dog and practice commands with the dog. We decided not to track tonight, pretty much because we forgot to do it back from swimming and then Ally fell asleep.  We did practice NUZZLE which is an active behavior disruption. If the child is crying, the dog will go nose her like saying ‘Hey, forget about that and pay attention to me!’. This command can be customized to any behavior we don’t want the kid doing. Like for Ally, her teeth grinding and hand flapping.  I also worked on OVER, a command that sends Perry sort of laying over whatever I point at. Ally sat with her legs straight out and I had Perry lay with her front paws and head over her legs. Ally seemed to maybe like it but not for too long. Its supposed to help provide the her with deep pressure some kids really seek out.

I think Perry is starting to bond with Ally. I took her out tonight to go potty and when we came back up and I let her be FREE, I found her next to Ally in the bed! She has also gone and sat or laid by her several times. She is not always doing this when everyone is around but I’m hoping when we go home and the novelty dies down, this will increase and create a strong bond between the two. Ally is definitely seeking Perry out. She calls for her and if I ask her where Perry is, she scans the area looking for her. She even says ‘my Perry’.

Off to bed. We are going to the mall tomorrow and practicing tracking indoors. Till then…..Goodnight!

 

The OVER command

The OVER command

Practicing tethering

Practicing tethering

Where Perry chooses to lay on her own

Where Perry chooses to lay on her own

Emma enjoying Perry

Emma enjoying Perry

Chloe with Perry

Chloe with Perry

Love the 'hug', but wish Ally's face wasn't blurry. She doesn't sit still! LOL

Love the ‘hug’, but wish Ally’s face wasn’t blurry. She doesn’t sit still! LOL

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Training Day 5: First Public Outing

 

Today I woke up feeling the mental exhaustion starting. It’s the first day I’ve felt like I didn’t want to get up. I know this is only the beginning. We aren’t quite half way thru our Doggie 101 course yet.

We started with a track again this morning. The tracks are getting a little longer each time. Today, we didn’t let Perry watch Ally leave as long as we have been letting her. Also, about a quarter of the way thru the track, the trainer Jessa handed me the Flexi and I got to ‘control’ the leash. Control is a very loose word here. Really it’s a way for me to keep her from running her full 25 miles per hour which I definitely can’t keep up with. It went really well and Jessa was happy with both Perry’s searching and my handling. Good!

Then we headed back to 4 Paws for a brief discussion on how our nights went. We were shown another command, UNDER. This is for the dogs to lay under a table when out to eat or under something table like to keep them out of the way. I was worried about how Ally throws so much food down, but I guess if it is thrown pretty directly at the dog, it will be used to help them bond. If its thrown far enough away that the Perry would have to crawl or move her paws, then its off limits.

Next, was what to expect at our first outing. Yep, we went to the mall today for the first time with our dogs as a group. A few trainers went along to walk with each of us individually to make sure we felt comfortable handling them there. Perry did better than I had expected. We had been having a little trouble with breaking command with distractions and I thought the mall would be worse. Much to my surprise, Perry was better! She laid in a DOWN for 1 ½ hours with only 1 correction!! Kids and adults were petting her and she still held it. Starting think maybe we do work ok together. 🙂

When it was our turn to be observed by the trainer, we struggled with the HEEL command. Nothing to be surprised about because apparently it is one of the hardest commands to master. So we practiced this for quite awhile until we started getting it down. As we walked by GNC, Perry decides that she has to go potty……SHE POOPED! Yep, right there on the floor in the middle of the mall. Thanks, Perry. At least I got that experience out of the way.

We tried another track tonight at the hotel. This time in a completely different hallway we have never walked down. Perry is so awesome she found us in a matter of seconds! I

Ally is showing some real bonding towards Perry. She seeks her out and today she laid down on her, told her I love you, and when they are near each other told me Happy! Not sure how Perry feels about her but she has done excellent about not getting upset with Ally grabbing her (which we always redirect and tell Perry what a good girl she was). One of my fears was Ally would lose interest but it is doing the opposite!

Perry has a skin rash/infection called a hot spot. So she is on antibiotics. Nothing serious but we need to keep it dry and keep her from chewing on it. This is something I’ve never heard of before. None of our previous dogs have ever had it or at least not that we knew of. With first round of meds though she doesn’t even look at it anymore.

We’ll see what morning brings. Its hard to sleep in the hotel. Partly its not my bed, and part my mind has too much on it. There is so much more than any of us thought there would be to all this.

Ally with the morning giggles

Ally with the morning giggles

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Training Day 4: Cool Smells and Birthday Wishes

We had an AWESOME day!!

We started the day with tracking again. It really is pretty cool to watch how fast she picks up the track. Of course, being this is her favorite game, she had no problem finding Ally. Saturday we should get our first chance to hold the leash in tracking.

We practiced STAND. This is used when we are in a HEEL and stop walking. Normally, the dogs would sit when you stop, however in the case of Ally, we will be using balance work and if the dog were to sit, Ally might fall over with the dog harness angled down in a SIT command.

Next up, HEEL with a shopping cart. Obviously this is to imitate real life when we need to go shopping. Perry heels a little forward, which is normal for the dogs. They do this because they need to see around the cart (or stroller, wheelchair, etc). Perry and I had no problem with this one! Its funny because I’ve caught myself saying that she doesn’t do this or that and then I have to correct myself and say, I can’t do this or that yet or the dog and I haven’t earned the proper respect for each other. Either way, both will get better in time.

The last half of the day was spent talking about how our nights were last night with the dogs and to voice any concerns we had. I was worried about the bonding and asked today. They settled my fears and told me basically there was nothing to worry about. I’m not doing anything wrong and Perry and I will have our own bond being handler and dog. I felt much better after this.

Then the conversation switched to tracking. We got TRACKING: 101. Jeremy explained how the dogs do their tracks. They are trained for trail scents and air scents. Each person sheds skin cells on a regular basis. They sort of float up over our heads about 2 feet and get caught in the wind and float down much like a leaf in the fall. The dogs smell these and run back and forth in an S pattern to find who/what they are looking for. It was really involved…..a lot more than you’d think, but it all makes perfect sense.  I swear I’ll never look at another dog the same way again!

Just a cool little tidbit about dogs and smells. People have about 5 million olfactory cells. This means we can smell something for about 45 seconds before our cells are maxed out and you can no longer smell the scent.  Dogs on the other hand, have 150 million plus olfactory cells. They can smell for 40-45 minutes before their cells are full. Amazing!

Tonight we practiced what we’ve learned so far and Perry and I did GREAT together! Its only been 4 days and there has been a vast improvement of the 2 of us working together. She is one amazing pooch!

Last, but not least, today was Ally’s 6th Birthday!! HAPPY BIRTHDAY, ALLY!!! Perry is a beautiful present 😉 Love you bunches!!

 

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Bittersweet goodbyes

We said goodbye to our respite nurse today. 😦 For those of you who don’t know what respite is, it is when a nurse comes in and takes care of an individual with medical needs to let the caretakers to have some leisure time. Basically, they babysit while you get a break. Its really nice to know that the person watching whomever is qualified and had training in handling your specific medical needs. Not to mention the relief you get to walk away for a few hours.

When our nurse came to watch Ally, I often took Emma and Chloe out to do something fun. Something we normally couldn’t do with Ally because she can’t handle it or she can’t last long at. This would include going to parks, swimming, shopping, bounce houses, visiting friends, etc. I always felt bad leaving Ally behind but there is something to be said for recharging the batteries. I’m not a robot.

It was bittersweet to say goodbye today. Bitter for losing someone Ally looks for, a friend, someone who has become a constant. Sweet for finally reaching a point that we no longer NEED someone to watch over her. It is not what it used to be 2 years ago and this Joe and I are very grateful for.

So if I were to write a goodbye letter to our nurse, it would go something like this:

Dear Pau-ween 🙂  –

                It was very hard for me to allow a stranger into my home and watch over Ally 2 years ago. I knew I needed the help, but its hard as a momma to let go and allow someone else to take over. Hell, it took me years to relax and let my own husband do some things! But 2 years later, we are at a completely different place.

                You have left footprints in our lives, memories and hearts. I remember the first time you saw Ally have a seizure. It really shook you up. You gave me a hug and said God bless me for dealing with the medical hardships our family was enduring. Because at that time, it WAS very hard. I remember you talking about rocking her to sleep. How great it was when you came back from vacation and she ran into your arms and gave you her big bear hugs! Ally loves you.

                You shared our joys and our pains. You watched Ally progress and take steps backwards. You’ve been there to witness us finally finding a successful medicine! It only took us 5 years!! You were the encouragement that pushed me over the edge to seek our soon to be new service dog, Perry. You watched all the work that went into that too. You saw us find a new house. Lord knows how badly we needed that! I cried on your shoulder. You wiped my tears.

                So thank you. Thank you for everything.

 

‘Much’ love,

Becky

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WE GOT OUR MATCH!!

Went swimming at the lake

Went swimming at the lake

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Finally, our match came in!  We thought it would be Friday, but something came up and they didn’t release them to us and there was a promise for Monday.  However, Monday came and 2 of their dogs went into labor, 1 was early labor.  So the early one (Pande) delivered (Monday night as we were waiting for matches) very tiny 2 oz puppies!!  Yikes!  One pup didn’t survive 😦 but the rest are now over 40 hours old and hanging in there.

So Tuesday came and we hear the second dog (Diva) is now in labor. After hearing how bad Pande’s delivery was with her preemies, our whole class had decided to try not to act like whiny school kids and shifted our focus to following the dogs and their pups progress. Thankfully, Diva’s pups were a healthy 7 1/2 oz! But this did push our match emails off yet another night.

Today was the day! In Emma’s words, it was THE BEST DAY EVER! I had just posted in our FB group wondering if now that the pups were all born if we might get those matches today or tomorrow. About 30 minutes later, my phone chirped at me to say there was a new email. When I looked and saw it was from Karen (the CEO and founder of 4 Paws) I flipped a lid! I came storming out to the living room yelling ‘WE GOT OUR MATCH! WE GOT OUR MATCH!’ I must have sounded like a lunatic from any passersby, but I didn’t care.  I just had to see the picture of our dog on a bigger screen than my little phone! And here is what our letter said:

Dear Ally,
  My name is Periwinkle, Perry for short, and I am a sweet golden retriever. I am from the Secret Wings litter. My brother Clank is also in this class. We were born Aug 20th, 2012. My mom is Melody and my dad’s name is Vic. My favorite toy is the tennis ball and I love playing fetch. Everyone who meets me says I am a super sweet lovable girl. I love to get hugs and give kisses. I went to the University of Kentucky, so I am super smart too! I can’t wait to meet you. Will you give me lots of hugs and kisses???
XOXO,
Periwinkle
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I couldn’t believe it! There was going to be Ally’s new BFF. She’s so beautiful! I showed her picture to Ally and told her her name is Periwinkle. I repeated it a few times and Ally attempted to say it! I know its a mouthful for her, but I don’t think it will take her long to figure it out!
I’m so past words for how I feel about this. I had a secret feeling that we wouldn’t get a match. That for some reason we would end up getting denied. Fears are laid to rest and full blown excitement has entered!! I wish Ally could share in this anticipatory joy and excitement too, but I’m hoping when Perry gets to stay with us in the hotel it will sink in for her. I can’t wait to see her reaction and how her world (and ours) will change. I hope Perry loves us as much as I already do her! Ha, I just told one of the women on my FB 4 Paws group that I don’t cry over happiness and here I sit with tears in my eyes!
Stay tuned for next weeks adventures! Sunday we leave for Ohio and Monday is the first day of training. I will try to blog every day we are there. For now, here are some pictures.
Found a clam!

Found a clam!

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Options, options….PLAN!

I’m reading someone’s blog tonight (oh yeah, I chuckle at the irony here), and am looking forward to Ally’s service dog more than ever! Service dog you say? Yep! Let me catch you up to speed.

Two years ago, our neurologist suggested some options for Ally since her seizures couldn’t be controlled. We had been through about every medicine available for her age and types of seizures. First up was the Ketogenic diet. I flat out refused. It may seem harsh, but it wasn’t arbitrary. Its a strict diet. Problem is, Ally wouldn’t eat most of the stuff allowed and some of her favorite foods that she would eat, weren’t allowed. There’s no taking a ‘cheat’ day with this diet either. We were told she would have to be hospitalized a few days to start the diet to make sure she adjusted. There’s a whole lot involved and if you want to know more about it, I suggest you Google it. All I could think was this is one nasty diet to have to be hospitalized just to start. Her chances of it helping….50%! THATS IT! 50/50 didn’t cut it for me and I said we were moving on.

Idea #2 VNS
Stands for Vagus Nerve Stimulator. Does exactly as it sounds, stimulates the vagus nerve. Whats that mean?? There are 2 vagus nerves that stem down from the brain, one on each side of the spinal cord. Ally would have a surgery to wrap a wire around the left nerve and a battery pack (similar to a pacemaker pack) inserted in the upper chest nearby. The VNS would automatically turn on, usually every 5 minutes for 30 seconds at a time to stimulate the brain. The point is the stimulation helps break up any electrical irregularity in the brain which cause seizures. Sounds good, but there are issues with it like everything else. First, its less effective on a child than an adult. Reason: these nerves mature as the person matures. Basically it means that the nerve can grow around the wires, making it near impossible to remove the wire at any point and not cause damage to the nerve….and this nerve is a really big deal for your body! Also, problems with implanting this on children is the wires can be too loose and then it doesn’t do anything. There were so many if’s about it (and only another 50/50) that it also wasn’t worth the risk.

***I am very happy for anyone who has one and has had great success with it! It was one option I WAS for trying, before we started researching the dog.

Idea turned plan #3 Service Dog
A dog? To stop seizures? Well, no. Of course not. That would be ridiculous. But service animals are trained for so much these days! Everyone knows of the police dogs, search and rescue, therapy dogs….but a seizure dog? That’s where 4 Paws for Ability comes in. We really hunted on where to get a dog for Allison. Believe me, its hard. Most places say no, because she isn’t old enough (some want her to be 8 and some want her to be at least 12). Some places turned us away saying it couldn’t be done without her participation….and that’s going to be minimal right now. She won’t be able to command it, she hardly speaks now. So 4 Paws told us ‘no problem’. We spent about 8 months raising $13,000 as a fundraising requirement to 4 Paws. We finished it last September!!! Let me say, the excitement I felt when I got the email saying we were in August 2013 class….its unexplainable! We had put so much into it. It gave us hope!

Now, its only 6 weeks away before we leave for training. Oh, since I didn’t mention before what our dog will be trained to do, let tell you now. He/She will be trained to bark when Ally is having a drop seizure, hopefully alert before but that is a natural instinct that can be encouraged but not trained to do. The dog will help her balance when unsteady, track her if she runs off, they will be tethered together to help keep her safely close out in public, and try to distract her when she is behaving in a manner that is unwanted, such as a meltdown.

Fancy dog, huh?! August, you can’t get here fast enough!! 🙂

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Introductions

Well, I’ve sat here now staring at this screen for about 10 minutes trying to figure out how to start this blog. I haven’t the faintest clue so just come along for the ride. Hopefully I do this right the first time and don’t have to delete and start over anymore. 😉

Emma, Becky, Allison, Joe, and Chloe

Emma, Becky, Allison, Joe, and Chloe

A quick description of our (my) blog. My name is Becky. I’m almost 31 (bday is at the end of this month) and I’m a wife and mother to 3 girls. My husband Joe is a wonderful man who is always doing what he can to provide for us and make everyone happy. He’s pretty awesome, though I don’t tell him that enough. His favorite thing to do is anything outside. Whether its grilling or teaching our oldest Emma to play catch, he is happiest out in the sun. He is also an avid runner. Currently he is training for a half marathon in September! I just wish some of his motivation would rub off on me 😉

Emma is our oldest and she is 7. She is going to be a 2nd grader in the fall is one awesome student and athlete! When she brought home her report card for the first time last year, she already had 4’s (apparently the best score you can get these days in elementary. Things are so different now is schools, just don’t get me start) in EVERY subject…..and she was the only one her class to do so! She is also very athletic. She’s only played basketball and soccer on a team so far, but that girl is strong, competitive, and fast. She didn’t quite get basketball (it was a couple years ago she did that) but soccer….she’s got some talent, what can I say. I bet she’d do well in baseball too. That girl can throw and catch. Her favorite things are riding her bike, playing sports, picking on her little sister Chloe, and helping with anything.

Allison is next. She is 5 and starts kindergarten this fall. She is our special child. By that I mean, she has medical issues. She was diagnosed by the age of 19 months with epilepsy. We know for a fact, she had seizures at 8 months old….my opinion, she’s had them since birth though it will never be able to be proven. Ally has been on so many different medicines its not funny. The poor girl saw the syringes that contained her kindergarten shots and started saying ‘Medicine, medicine’. She’s finally on one med that has done a really nice job of slowing them down. She’s on a total of 3 meds now, which is good for her. Ally is also developmentally delayed in all areas. She can’t speak sentences and not always able to tell you what she wants. Many times she will start crying for no apparent reason and its trial and error. She doesn’t pick up her feet all the way when she walks, she trips often. She’s physically 5 but in other areas she’s anywhere from 18 months – 24 months. We love her all the same! She’s been such a blessing to add to our family and we wouldn’t change that. Her favorite things to do are watch Signing Time, hug, watch Signing Time and sit with her Papa (my dad).

Oh, and we are getting a service dog for her this August!! So exciting!!

Last but not least, there’s Chloe, who is 4. She is a little blonde pistol with attitude. Ever heard that country song about ‘…you’re about to find out what this little girl is made of….gun powder and lead’? Well I think it was written about Chloe. She is very much a girly girl. She loves wearing skirts and dresses and her plastic high heels. She knows what she wants (anything you have), when she wants it (now), and how to get it (cries, screams, throws a fit, whines, and tattles). You want to talk frustrating….this girl deserves her own blog! Now I don’t know how these words will translate on a computer screen, but just so you know, I’m smiling the whole time writing this. She will make some man miserable some day, but she’ll be worth it. She knows how to charm you too! Her favorite things to do is try to be just like the bigger kids, be the baby when they all play ‘house’, help me cook, and play on the iPad.

And me, I love to cook. I always wanted to have my own bakery. I think it would be really awesome to cook one meal with Gordon Ramsey! That man makes everything look like such a masterpiece! If I could just get him in my kitchen, or better yet I’ll go to his and he can give me some tips!!

So there it is, a bit about us.

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