Saturday, November 26, 2011

sizes and bath


Lilly and Logan are getting so big. I have been measuring them using the same bear since they were born. Look how big they are from when the were born 4.5 months ago! My babies are getting too big!

Logan Danger Loveless
Logan at 1 week old

Logan at one month old


Logan at 7.5 weeks old

Logan at 3 months


Logan at 4.5 months


Lilly Mae Loveless

Lilly at one week old

Lilly at one month old


Lilly at 7.5 weeks

Lilly at 3 months old


Lilly at 4.5 months


Lilly's beautiful smile today!



I finally bathed the babies together today. Aren't they cute together!

Friday, November 25, 2011

Cerebral Palsy Remix


I think this is beautiful!

Thanksgiving


3 Generations. Lilly and I decided to sit on my momma's lap. She has no choice, we squished her! ;-)


I hope everyone had a great Thanksgiving! We did. In the morning, Rocky and I visited DJ up in Draper. He was so happy to see us, and we were happy to see him. He is getting really excited, cause he thinks he might get a 12 hour home visit around Christmas time. If he does, Rocky and I are going to take him to the movies, and out to eat on Christmas day. I hope he can earn it! We also gave him his hoops, so he can practice dancing too. His therapist approved his hoops for him. I am really proud of DJ, he is making a lot of progress!

Then we went to Grandma Simons for Thanksgiving Dinner. My sister, Rachael, had to work, so my mom took her two boys (Caleb and Chase) and I took Ayslee. We had a lot of fun visiting the family! I have a great family. And I LOVE Grandma and Grandpa Simons! I am also glad that we got to send the day with my momma, my hubby, Kody, and the babies! I want my family to know that I LOVE this and very thankful for them all!

Rocky and DJ.
DJ is getting so big! I love this kid!



This link right here is about a young man that has CP and HIE. He is going to BYU. Very inspiring young man!
BYU freshman defying odds, one step at a time | ksl.com

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Ayslee playing with Lilly and Logan on Thanksgiving


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Lilly and Logan playing on Thanksgiving at Grandma and Grandpa Simons house. Lilly and Logan love each other!

Wednesday, November 23, 2011

Struggling

There are good days, and there are bad days. Today, I am kind of feeling kind of down. I am sad. I am sad for Lilly Mae. I am sad that she will not be able to do what most kids will do. She most likely will never be in a dance class, she will not play softball, she will not be able to run around with her twin brother. It will take her long time to learn to sit, it will take her longer to walk, if she is able to at all. Last night I was bathing Lilly, thinking how many years will I need to bathe her for? Will she ever be able to bathe herself someday? Then after the bath, I put a diaper on her. I started thinking when will I be able to potty train her? Will she be able to potty train? It makes me sad, because I have sooo much love for her. She is such a sweet spirit and I want the best for her. I want her to be happy! Will she be happy? Right now, she does not know any better. Will she know better later? Will that depress her? Is my little girl in pain or uncomfortable? This is not the common cold or flu, or even RSV that goes away. This is a brain injury that will always effect her. Will I ever be able to give her the house she deserves? Where she can freely get around with her wheelchair? Will we be able to make that kind of money to do that for her? Maybe I should try to get on Home makeover and have Ty give her a house. LOL. That will never happen. Sorry, I try to be positive most of the time, but sometimes I let things get to me. I will pick myself up before tomorrow for Thanksgiving! Thanks for listening. video

Lilly likes to "be strong" and stand. She gets a big smile on her face. It is not the easiest thing for her to do though. If I held Logan, he would just stand with my support. It takes Lilly a little more time. But she is happily doing it.


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Logan learning to splash a little. He was splashing a lot more before I got the camera. But still cute!

Tuesday, November 22, 2011

Thankful


I am such a lucky women! I think I have had my share of trails in my life. But to be honest, I am so grateful for all my trails. I do not usually see it at first, but later I usually see it. I am so lucky to have 4 great kids, and married to the man of my dreams!

I saw my ex husband yesterday. I remember all the hard ache I had when everything went down. It was heartbreaking to me! I felt like my life just fell apart, a part of me just wanted to die. Now, I am SOOO GRATEFUL that I am no longer with him. He is NOT the man that I want. He is not the man for me. Now, I am married to Rocky, he is the man for me! He is strong in the church, which is so important for me. Having the same beliefs is a huge stress reliever in a marriage. Rocky LOVES me sooo much. He would do ANYTHING for me. Yes, we fight. But all couples fight. We are learning to live with each other that came from two totally different families. Rocky also supports me. I am able to stay at home, and be a momma to my kids. Such a huge blessing. Rocky proofs his love for me everyday that he goes to school and work and lets me stay home with the babies. Rocky also does not want to be here in Utah, all his family and friends are in Kentucky. But he is here for me, he cares about me that much, that he will sacrifice family and friends for my family and friends. Even if I want him to go back to KY someday for him. There is just so many things about this man. I am so lucky to have him. And if I did not go through the trail that I went through, I would not have him. You know the song, "Unanswered Prayers." I think that song pertains to me. I THANK GOD EVERYDAY FOR UNANSWERED PRAYERS, BECAUSE NOW I HAVE ROCKY!!! I really do hope that for Kody and DJ's sake, my ex, his wife, and Rocky and I can all get along. We saw a glimpse of getting along for the first time in 4 years yesterday. That made Kody so happy. So I hope it can continue.

Last night, Kody hooped danced for the governor of Utah for Indigenous Day. Governor Herbert signed something to declare it an official holiday, and celebrate the opening of Natural History Museum of Utah. I video taped it, but only have the first part, cause my stupid camera died in the middle of it, and then I can't find the thumb drive to help me tranfer it. But just trust me, he did a GREAT job. I am so proud of him.

Then we have Mr. DJ. I miss DJ sooo much! On our way home, he called us. He wants us to visit him on Thanksgiving. So I need to find a babysitter so I can see him. He is making so much progress, and doing so well. I love that kid to death!

Logan is just a smiley boy! He smiles at everyone. And he loves to play! He is just sucking on everything, and starting to find toys to play with. He is learning to become a good roller. I love this stage! He has the cutest laugh!!

Lilly is our miracle baby! We are just lucky to have her. You can tell the sweet spirit that she has. And she LOVES patty cake! She will smile every time with Patty cake.

I belong to two different facebook groups that have babies/ kids that have HIE just like Lilly. All these mommas have very similar stories as I do when their babies were born. It is a support group. The two groups are called "Hope for HIE Forum" and "The Beautiful Faces of HIE." I love these groups, it is teaching me sooo much. I feel like I am not alone with this, and I can post any questions about Lilly, and many of the mommas have gone through the exact same thing and have advise for me. It has helped dramatically! Anyways, there is one mom that wrote a poem. I asked her if I could share with others, cause it is beautiful! It reminds me of Lilly when she was first born:

He’s my son. (By Margaret Hall)

You lie there. Unaware of the panic that now surrounds you.

Your head bobs with each compression. Yet still you lie there.

You make no noise, while inside I am screaming.

You have not yet been introduced, yet Daddy’s heart hurts with love.

I turn to him now, and wait…

The silence is unbearable. I wait…

A single tear runs slowly down his face. Yet still, I wait.

I cling to hope and faith and pray that soon the silence will stop.

You are fighting so hard, I can feel it.

You already bare the scars of a courageous war.

You are beautiful, perfect.

Don’t give up now.

Brave warriors join you in your battle.

They heard your silent calls for help.

They take you from this fear filled room

And surround you with warmth and your first glimmer of life.

Comforted by the machines that now support you,

We adapt to our new role as spectators of your fragile beginnings.

The rise and fall of your chest is addictive to watch

Not daring to look away, for fear it might stop.

Your leg starts to shake. My heart misses a beat.

You shake all over now, and an alarm sounds.

Once again your silence is heard

And the brave warriors return with unquestionable vigilance.

They fill your precious body with healing liquid

And you return to your silent post.

Days go by and slowly but surely your enemy shows signs of defeat

The rise and fall of your chest is fighting against the machines

And you inhale your first scent of life.

We are full of emotion as our skins touch for the first time

We cry and imprint this memory in our souls

We stare at this work of art, taking note of every line

Not wanting to forget a single moment.

There is cryptic talk of damage to your brain

I am sure that this must be wrong

It feels unreal and we look at you lying there so innocent

How can this angel be so perfect and have so much that is wrong.

The tears fill our eyes as your life is unveiled

And we hurt deep inside for the loss of a boy we once dreamt of

But here is this child so handsome and strong

Our purpose is clear, no more questions need asking

He is perfect, he is needed and loved, and most importantly

He’s my son.



Did you like it? I love it!

I am so thankful for my ward (church). I told my Relief Society president that I was struggling. Especially cause Lilly was crying so much. Her new medicine has helped that, but I still could not get anything done. So during church they passed around a list for women that are willing to come help me. Everyday, someone comes and just help me hold or play with the babies so I can feed them easier, clean, take a shower, if I need I can take a nap, etc. I am so thankful for that. I am in the process for getting home health to come in, and have a nurse come help me with Lilly for a few hours, they think I my insurance will approve it. I sure hope so. That will help me a lot! But for now, I have this.

To end this blog, and say Happy Thanksgiving to all, I must say I am thankful for my religion! I am so proud to be a member of "The Church of Jesus Christ of Latter Day Saints!" (Mormon). I wish everyone had the knowledge that I have. I wish I could share the church with everyone, because it brings me so much happiness. I am thankful that I know who I am, that I know where I came from, and I know where I am going. So many people around the world are searching for that knowledge, but I have it. I think if it was not for that, I would be struggling so much for with Lilly's diagnoses. But I know this is exactly how she is supposed to be. She is one of Gods most valiant souls! She is an amazing. And when you hold her, you can feel it! I am so thankful that God has entrusted me with such a beautiful child! I think she will teach us so much than I will ever teach her, she is already teaching me.

I am so grateful that we have a prophet on the earth today. I am so glad that President Monson guides us today. I am thankful that the church is the exact same church, and we will learn the same things no matter if we are in Europe, Utah, Kentucky, China, etc. I love how organized the church is.

I know I am up for some more trails, but I am grateful for them. It has made me the person I am today!

HAPPY THANKSGIVING!!!!!

Thursday, November 17, 2011

One Step At A Time


Ever since Lilly has been put onto her new medication

, she has been doing TONS better! It does make her tired, but she NEVER slept before. Now she sleeps the same amount that most babies do. YAY for me.... Well, during the day at least. I am still working on her sleeping AT NIGHT!!! But they are small babies. On Monday, Lilly and Logan went and saw Dr. Knochel for their 4 month well child check. They both got their shots. Lilly was okay with the shot, cried for a second. Logan on the other hand cried bloody murder! He is not a fan of shots! Developmentally wise, Logan is ahead of his age! Lilly is a little behind, but I think she is doing GREAT given the cards that was dealt to her. I am so proud of both of my babies!!!!!


Logans weighed 12 lbs 8 oz which is in the 8%. Height was 24.0 which is in the 17%

Lilly weighed 10 lbs 7 oz and is in the 2%. Height was 23.0 which was in the 10%


Lilly did very well for her therapy sessions. Mary from "Kids Who Count" (Early Intervention) is teaching us what to work on with Lilly during the week. It was the best therapy session we had so far. Cause usually Lilly screams during therapy. But with the new medicine, it really has helped.

Nov 16, 2011
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This is Nov 17, 2011. Logan and Lilly are getting ready to eat some baby rice cereal.



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Eating!

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Lilly was DONE eating. We are happy she is letting us feed her by spoon! But not for long periods of time! But the other day was the first time we brushed her teeth, and she did not scream. And everyday we do "Pacifier Time" and see does not scream through the whole thing every time. There are times she does, but today, she didn't! I was so happy and shocked! Knock on wood, but I hope she continues to let us do it if we are faithful on putting it in her mouth. This is also showing Lilly arching her back when she is MAD!




Logan brushing his teeth on Nov 15, 2011

Lilly and Logan needed a rest after some playtime and therapy. Lilly has a new therapist coming too now. Yesterday, Nov 16, 2o11, Lilly was officially diagnosed with CVI (Cortical Visual Impairment) by Dr. Young. So Kids Who Count has Pam from PIP coming to try to teach Lilly to see what is in front of her. Lilly will look to the right to mid line, but nothing to the left. Sometime she paid attention to what was in front of her, and sometime not. The good thing is, she can see and the CVI is not serve by any means! She did look at thing and touch what was in front of her too! Which is AMAZING!!!




Pam for Kids Who Count, gave Lilly a pink rattle and Logan a blue rattle. I have never seen Lilly grab onto something for so long! So LOVED her rattle. And I was watching carefully after Pam left, Lilly is thinking about putting it into her mouth. She is nervous and it scares her, but she slightly opened her mouth a few times for it! BREAKTHROUGH!!!! Logan on the other hand tried his hardest to eat his rattle. LOL.



Tuesday, November 15, 2011

Baclofen

Today marks the 3rd day Lilly has been on her new medication, Baclofen. It is a generic form of Lioresal and is primarily used to treat spasticity which is also referred to as an unusual "tightness" of muscles that occurs from damage to the brain or spinal cord.

Since she has started this new medicine, Lilly has been more relaxed, sleeps more, and cries less.
This, not only makes Lilly happy, but allows Emily and me to have somewhat quieter days and nights. She still cries quite a bit and is still tense, but is more comfortable and more manageable. We love her so much!

Hopefully, one day, we can look back at this time with Lilly and know that it was only for our benefit. I know that, will the help of Heavenly Father, our friends, and family, we will do just that when the time comes.

Sunday, November 13, 2011

4 months old!

Rocky wanted Lilly to be in her Johnny Jumper. He said it is good therapy for her. So Lilly slept instead.
Logan LOVES his toys and bottle! Toys always end up around his arm!

Tomorrow Lilly and Logan will be 4 months old! They are getting so big! They both have big personalities.

Logan loves to smile and laugh. He is such a fun loving little guy. He is such a big flirt. He loves people. He just started to roll. He hated him tummy at first, but is starting to like it. He loves playing with his toys. His cousin, Lexi, in KY, gave him a Mickey Mouse. Logan LOVES his Mickey Mouse. He eats it all the time. Lilly does not like to suck on her hands, and Logan must know sucking on hands is an important developmental thing, so Logan takes the pleasure of sucking on her hands for her. Such a great twin brother!

So far, Lilly has been diagnosed with Moderate HIE (hypoxic-ischemic encephalopathy- which means lack of oxygen during birth), Mild Cerebral Palsy (CP), and she may have CVI which is Cortical visual impairment. The good thing about CVI, is with therapy is can get better! So she has just started vision therapy. CVI is when your brain has a hard time understanding and processing what you are seeing. But Lilly can see. Her favorite color is yellow. They think that is the best color she can see so far.

Lilly is still on her feeding pump with her g-tube. She will eat small amounts of rice cereal on a spoon. Which is amazing cause she HATES anything in her mouth. She HATES pacifiers and bottles.

Lilly will also start rehab soon up at Primary Children's Hospital. She will go there for her CP, but also for her neck. She only likes to look to the right, which is causing a flat spot on the back of her head and making one of her ears go forward. We might have to end up doing helmet therapy later, but hopefully we can resolve the issue now.

Lilly started on a new medicine to help with her tone, and tight muscles. CP can be uncomfortable so it makes her cry ALL THE TIME! We just started in yesterday, and I really hope it helps. Cause I am going insane with all the crying. If it will help, I will be so relieved and so will Lilly. The only problem so far with the new medicine is that it makes people constipated. So Dr. Knochel also prescribed her something to help her go poop. She is supposed to have 2 poopy diapers a day with it. It is still morning, and she is on her 3rd poopy diaper. She is so funny when she has a poopy diaper. She HATES her poopy diapers and will try to lift her butt up and cry until I change it. Two of her diapers were in the middle of the night, and so she woke up twice to get help for it.

Something else we noticed with Lilly now, is her neck is weak. She will lift it up for short period of time, and then it falls. But at the same time, she is VERY strong. It is weird to explain, but she is weak and strong at the same time. Lilly arches her back when she is really mad. She starts kicking her legs, and then arches her back and straightens her legs. There is NO BENDING the legs when she is mad! Or putting her in her car seat when she is mad it is impossible with her arching of her back. The other day, I put her in her swing and buckled her up so I could go pump. She started crying, and I told my husband to go see if she needed a diaper change. She was eating from her g-tube at the same time. Lilly arched her back so much and she somehow got out of her buckle and fell on the floor! The g-tube was making her stay on her side. My husband yelled for me, and I came running in. I was on the edge of tears when I saw that! She sleeps in her swing so I can feed her in the middle of the night. She has to be upright when she eats from a g-tube. I felt like an awful mother! So we put the buckle on a lot tighter now!

We also found some of the reason for her awful reflux. I told the doctor that I think she was allergic to cows milk. So I stopped drinking milk myself, cause she was drinking my milk. I also stopped eating cheese. It was hard, but I want the best for her! Well, we went to a GI doctor. He did a stool sample for Lilly, and we realized she is a lot more allergic to milk than we thought. Milk is hidden EVERYWHERE! It was still showing up as an allergic reaction in her system. Which I found out that a lot of kids with brain injuries are allergic to milk and have awful reflux. So, I gave up, and am giving Lilly a formula with no cows milk or soy in it. It is expensive stuff, but luckily my insurance will pay for it! Which is a huge help for us! I am still giving Logan my milk though. The GI doctor also put Lilly on some medicine to help the pain of acid reflux. It is so sad seeing her in so much pain, and seeing vomit all over coming out of her nose and mouth in large amounts. It looks painful and sounds painful as she is gaging on it, and trying to control it. You can hear it coming up and down. Poor baby!

I joined two facebook pages called "Hope for HIE Forum" and "The Beautiful Faces of HIE." These two groups have taught me so much! A lot of these kids also have CP from HIE brain injury too. I feel like I am finally not alone in all of this. I can't call my normal friends and ask them a question about a medicine they tried for their baby or a g-tube question, etc. But I finally have this group, where I can do that. Some people have even called me and we have talked. Great support groups! I am so thankful for them! I learn little things, that we just thought were weird, is actually common among HIE kids. For example, Lilly breathes loud. People think she is sick, but I also tell people it is just her normal breathing. We found out that is normal thing for HIE kids. Interesting!

Early Intervention- Kids Who Count, is also a great blessing in our lives. Our therapist, Mary, is so good, and teaching us so much on how to help Lilly Bean. I also love their toy program. The "toy lady," Holly, comes and lets us borrow toys for Lilly and Logan that are age appropriated and help them with developmental needs. It is so parents do not have to spend a lot of money on different things. It is only supposed to be for Lilly. But Holly hooks Logan up too. Well, they just let us borrow "Signing Time Videos." Those videos are expensive! And Logan and Lilly will both watch them happily! I am wondering if Lilly will be speech delayed. Because Logan talks up a storm (for being 4 months old and all). But the only time you hear Lilly use her voice is when she is crying. So I am signing with both of them, cause it is good to do that anyways. But it is nice to have those videos too!

I am trying to have the best attitude that I can with all of this. However, it is very stressful. Having twins is stressful. Having a child with Special Needs is stressful. I have BOTH! I am struggling here! If I had the money, I would so hire a nanny to help me! I am trying to go through my insurance, cause I hear that sometimes insurances will pay a nurse to come everyday or a few times a week to help out with their special needs babies. I doubt that will happen, but I am trying. I feel like I can not give Lilly all the attention and therapy that she needs. And I have no time to clean my house or anything! Some women from my church came to my house on Thursday and helped me clean. It was SOOOO nice and helpful of them. I am so thankful. People have asked what they can do to help. So this is now my answer: I would LOVE people to come to my house and hold a baby, so I can work with Lilly or clean, or nap. LOL. So if that is something you are willing to do once a week, let me know. I need help!

Anyways, I have been just blabbering. So I will go now. :-)



Saturday, November 12, 2011

Kody Pow Wow at UVU

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I am soooo proud of Kody! He performed in his first Pow wow outside of Nebo School District today (Nov 12, 2o11). Utah Valley University put on a Pow wow and Kody was asked to dance. He was so nervous, but put that aside and danced! He did a great job! I have such great kiddo's. Proud of each and everyone of them. Hope you enjoy the video's of him dancing. And make sure to comment to let him know what a great job he did.

Tuesday, November 8, 2011

Lilly Mae

We are going to have some trails ahead of us! We went to a Neonatal Follow-up and a neurologist took a look at Lilly. She told us that she does not only sees Hypoxic Ischemic Encephalopathy (HIE) but she also sees Cerebral Palsy (CP) in Lilly. We still do not know the extent of the CP, but she will have some struggles ahead of her. I just hope that I can be the best mom I can for her. I need to look into some programs, to see if I can get some more help. Cause having twins is hard enough. But I need help making sure Lilly is getting the therapy she needs, so she can have the best possible life. She is such a sweetheart, I just want the best for her. I am feeling overwhelmed, but I know I can do it. I see blessing that were once trails, to prepare me for Lilly. I am so glad I had those trails at the time. For example, when I retired from the army due to my back injury. Now I have great insurance for her, I will not have to worry about outrageous medical bills. I only pay $38 a month, plus $12 co-pays. How blessed we are for that. No deductibles! It was hard at the time, but a huge blessing now!
Something interesting, about 10 years ago, I told my mom that I have a feeling that I will need to know sign language for a child of mine. A lot of kids that have HIE or/and CP are non-verbal, especially in the beginning. So at least I am now fluent in ASL, so I can teach her, and we can communicate no matter if she can speak or not.
I know my little Lilly is a special spirit of our Heavenly Father! I am so grateful for her. I am grateful that she is alive, and hopefully happy. She does cry a lot, but hopefully she will start smiling more than crying soon.
Next week Logan and Lilly will be 4 months old! It has been a stressful but wonderful 4 months. I would not trade it in for the world.
A poem that I heard about 2 years ago, and again about a 7 months ago. Was given to us again. This is how I see things. I hope you enjoy the poem!

Welcome to Holland,

By Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. Your buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bages and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is bus coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever ever, ever go away.... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to
enjoy the very special, the very lovely things... about Holland.




I am lucky, I get to visit Holland and Italy! I get to travel the world and learn more about the world!













Rocky's Family Meeting the Twins

For Fall Break, on Oct 19 2011, Rocky, Kody, the twins, and I hoped on the plane and went to KY to have them meet Rocky's side of the family. I really wish we had more time, because we were on the move the WHOLE time. Everyone wanted to meet the babies, and we had limited time. But we saw a lot of people, and I am so glad they meet them. Family is the most important thing in this world. I am so grateful for Rocky's family. I love my in-laws!


Rocky's mom: Debra Wilson


Great Uncle Joey Pitman

3rd Cousin: Catrena Trujilo

Great Grandma Shirl

Lilly and Mamaw

Great Grandma: Granny
Kody and Logan chillin'

Aunt Amber and Cousin Lexi

Great Uncle Jerry

Papaw and Grandma Loveless


Uncle Brad and Cousin Lexi and Deagan

Great Grandpa: Bummy
Rocky's step dad, Gary Sexton and his wife Diane

Great Grandpa: Papaw

Bummy, Papaw, Aunt Tammy, Rocky, Logan and Great Uncle Joey