Hannah...

Wow. I have so many thoughts running through my head right now, I'm not really even sure how to start organizing them so that my words make any sense. I'll try my best.

This weekend has been the luminary sevice at Evergreen Cemetary, where Khoen is. It's beautiful. And I'm touched by the fact that people have told me they have been through, and seen where my sweet Khoen and sweet little Chloe are. We rode through both nights, and its just so amazing.

Each grave has its own luminary, and they also write "In Loving Memory" in the lights. Tonight, I was able to stop the car, and walk out to Khoen's grave. But apparently him and Chloe decided to play a trick on me, because they knew I was coming. Their lights were the only two in their section that were burnt out. And I didn't have anything to light them with, so I couldn't take a picture of them lit.

It's ok though, I take it as a sign that they were right there with me, just being silly little kids. <3

Yesterday morning, I woke up not feeling well at all. Plus I had a pinched nerve in my neck/shoulder, and literally couldn't breathe without being in excrutiating pain. It was terrible. So we didn't do much, and I kept Kenna home from school. There was honestly no way I could drive her to school in the condition I was in.

Last night, after Dustin was off work, we went to help Hannah set up for her baby shower. We got it all ready for the shower today. I think it looked really good. :)

This morning, I got up early, and baked cupcakes for the shower. I was feeling a ton better than yesterday, other than my neck being a little sore. I managed to get all 3 kids fed, bathed, and dressed before Dustin got home from work. Then we headed out the door; the kids and I with Ashley, to go to Hannah's shower, and Dustin to Wesley's funeral.

Backing up a step: It's been a week full of loss, and it breaks my heart. One family, the Telsrow's, lost their 24 year old son Wesley, to cystic fibrosis. He was strong, and fought hard, through surgeries and transplants and hospital stays. And he got an infection that his body just couldn't fight through. Dustin had been friends with him for a long time, and was really upset.

We ran into Wesley at Lowe's, just two nights before Khoen passed away. We had all 4 kids with us, and he was one of the very few people who got to meet Khoen before he went to live with the Angels.

And another family, the Turners, lost a 30 year old husband, and father to 2 young precious girls. He was battling brain cancer, and his chemo caused problems with his lungs. He fought hard as well, and is missed so much by his family. It just really does break my heart.

:(

On a happier note, I think Hannah's shower went really well, and I hope she enjoyed it. She got lots of awesome things for her twins! Austyn and Bently are gonna be two spoiled little cuties!

We played so many fun games...I think the favorite was the candy match-up game. I'm glad I was able to be a part of it.

I've had quite a few people, both family members and friends, mention to me that they didn't see how I was able to be so close to Hannah and help with her shower and everything else, when she's having twins and I just lost one of mine. So I wanted to explain how I'm ok with things.

Khoen and Mikah are my twins. They will always be my twins, whether they are here on earth, or in Heaven. And I miss having my twins together here on earth more than anything. I miss my Khoen more than anything. And it isn't always easy.

But, I love Hannah. Hannah means more to me than she or anyone else will ever realize. Hannah didn't even know who I was, but she reached out to me when I lost Khoen. She reached out to me without ever hearing my name. That's what I call an amazing person.

Hannah's twins are Hannah's twins, and she deserves this. She has been through so, so much, and she deserves the world. Unfortunately, so much of her world is in Heaven with Khoen. Her son Raidyn, her uncle Ray, her brother Quinn, her Papaw, and thats just a few of them. Hannah has always wanted twins, just like I always wanted twins. And Austyn and Bently make Hannah smile. Seeing them on ultrasound, hearing their heartbeats, feeling them move, preparing for them, all of that makes Hannah happy. And that's exactly what I want for my friend, for her to be happy.

I remember being pregnant with my boys, and how excited I was about it all. I remember daydreaming about their firsts; especially about this Christmas. And no, things didn't turn out as I had dreamed. I would much rather have Khoen here at home with me tonight rather than visiting him at the cemetary. But, this is the life that God chose for Khoen, and this is the life that God chose for me.

Khoen was meant for bigger and better things. He brought me closer to God, and made me believe stronger than ever. He gave me hope that better things exist when this life is over, and something to look forward to when the Lord calls me home. He gave me purpose all over again, because now I want to live to make him proud, and raise his brother and sisters to know exactly who Khoen was, and why Khoen is special. And trust me, I'm going to do just that.

But just because my plans didn't turn out as I had prayed, doesn't give me the right to be any less excited for someone else who had twins. Thats just that ugly side of me, where my selfishness and jealousy live, and I don't like that side of me. Everyone has that side, and some choose to let it win and take over their lives, while others choose to be bigger than that. I want to be bigger than that. I'm not going to look not only at what I have lost, but also what I have gained.

Hannah and Ashley have a stronger bond with me really than anyone else, even though I've known them for a lot less time than most of my other friends. And I'm not saying that meanly towards anyone; I just mean that they know the pain that I feel, that sometimes takes over me, and they've unfortunately walked in those same shoes.

They've walked into a cemetary, and said their final goodbyes to their babies, which none of us should have ever had to do. Raidyn, Chloe, and Khoen were all just so perfect. They were Angels here on earth, and they are Angels daily for us in Heaven. Raidyn and Chloe made sure they found Khoen, and made sure their mommies found me. They knew how much I needed their mommies. And I'm forever grateful for that, sweet babies. I can't wait to meet each of you someday as well. <3

So yes, I am happy that Hannah has let me be a part of her pregnancy so far. Austyn and Bently mean so much to me, and I can't wait to hold each of them. That doesn't mean its never hard; I'm human, of course there are times when I feel a little overwhelmed.

Today, towards the end of watching Hannah open her gifts, something hit me in the pit of my stomach. We were on the last present, and I just remembered being excited about the things I had prepared for my boys. The little preemie clothes, the diapers, the little socks and shoes. I remembered how happy I was. And then I just missed Khoen.

When we were done, I snuck outside for a few minutes with Kaisyn. I just needed a little fresh air, and a second to clear those thoughts out of my head. I didn't in any way want to make Hannah feel sad on her special day. Today wasn't about me, nor my twins. It was about Hannah, and celebrating the lives of her 2 little miracles. I would never do anything to take away from that.

So I went outside and just looked at the sky for a few minutes. And I swear I saw a handprint in the clouds. I'm not making this up either, I swear. I saw this handprint, and it was huge. At first I thought aww, maybe it's Khoen, telling me not to be sad. And maybe it was. But then I thought, maybe it's God's....maybe its him reminding me that this is His plan, and it's all in His hands. It's ok for me to be sad sometimes, and its ok for me not to cry at other times. And I was reminded of that.

Whether is was God's hand, or Khoen's hand, or just a completely random coincidence, it made me feel better. It made me smile again, because I'm happy I got the time I did have with Khoen. I'm glad that I did have twins, even if I didn't get to live it out as long as I dreamed. I'm glad that I can call such a sweet, beautiful, perfect little angel my son.

Hannah, I love you. You don't know how much I appreciate you letting me be a part of your pregnancy with your twins. You don't know how often I pray for you, that things go right and you are able to feel the happiness you so much deserve again. You don't know how much you mean to me, and how much I value you as a friend.

If I ever cry around you because I miss my twins, please don't feel guilty. Ever. You have no reason to. It will never mean I am any less happy for you, your family, and your twins. I'm telling you now, on their firsts, I'm gonna cry. I'm gonna cry when I get to help you celebrate their first birthday, I promise. Because it will be such an amazing milestone for you, and for them, and we will all be able to breathe a little easier, because we have all been through so much. But I am so proud of you as a mother, and as a person, and I'm so lucky to have you as a friend. Thank you from the bottom of my heart for reaching out to me when I needed it the most. Thank you for understanding when I can't find my smile. Thank you for staying by my side through the tears. And thank you for just being yourself, and letting me be a part of your life. You are strong, beautiful, and amazing, and I couldn't do this without you.

And sorry for picking on you in this blog ;) but I just had this on my heart, and needed to get it out in the open. If my tears ever bring you guilt, I will never be able to forgive myself, because that will never be my intention. So I want you to know that now, up front, in case it ever happens in the future. I love you, and your twins, and yes, I miss mine. But I'm still a mommy of twins too, and I'm gonna be by your side as long as you will let me stay here!! :)

It's time for me to get my kids in bed, and I'm probably gonna cry a little, then go to sleep too. But this time, I think I'll cry because I'm so happy to have the amazing friends that I do have. Through it all, I'm so blessed. My kids, my husband, my family, my friends. God knows what he is doing, and we are all going to be ok.

Khoen, you will always be right here with me, and I am still working on doing something big just for you, in your name buddy. I love you forever and always, and I can't wait to see you!! Big hugs and big kisses from mommy just to you. <3

Broken.

I'm so broken. Broken down mentally, physically, & emotionally. I feel like I'm going crazy. Only because I try so hard to keep smiling and stay strong and it gets tiring. I'm so excited to have this yard sale/bake sale, and honor Khoen in doing so. But tonight I feel so mad that I even need to have it.. I shouldn't be raising money for Khoens funeral. I should be buying his first Christmas presents. I should be helping him learn to stand up. I should have him here, in my arms, rocking him. I tried to rock Khoen bear tonight. It helped at first, then made the tears come more forcefully. It doesn't help that I sm sad tonight that we had to give ip Brody, our dog. I miss him too. And due to some unfortunate health conditions, I lost my one reliable babysitter tonight too. I'm praying things get better for her, I know it tears my mom up seeing her this way. But it's hard, because we have lots of doctors appointments in this house, haha. I feel so sick tonight too. Not like I'm actually sick, just sick to my stomach because I'm hurting. Its like one emotion brings up another reminder, and it's a whirlwind downhill. I think what scares me too is that I can't remember how Khoens cry sounded. I promised I would never forget, it was so unique and I used to be able to hear it clearly. Now I can't hear it at all. What if that means I'm forgetting the few memorlies I have? I know will never forget Khoen, but what if I get to where I can't see his face without a picture? It's only been 5, almost 6, months, and I can't hear his cry. I'm so scared of that. And it's killing me. I've been calling every week to see if his autopsy report is in yet, so we can get his death certificate and close our case with DSS. They have to be involved until then since he died in the home. So far, they keep telling me it's not. But I'm scared of the day when they say it is. I want a birth certificate, without deceased stamped on it...not a death certificate. I tried sitting downstairs, so my crying wouldn't keep Dustin and Mikah up, since they are both asleep in our room. But I kept staring at that spot. Khoens spot. Where he laid when he took his last breath. Where he was when Dustin did CPR. Where he was when the paramedics tried to shock his tiny heart. But he was gone. I love, yet hate that spot. And I had to come back upstairs, because staring at it wasn't helping. God I just wish Khoen was here. Makenna asked me the other day if wishes came true. I told her sometimes yes, but not always. She said she didn't believe me. When I asked why she said she wishes every night for Khoen, but he can't come back. I think she just knows how much missing him hurts me, and it makes her hurt worse too. I want to be excited for Christmas. I want to be excited for Saturday. I want to be excited for it all. But tonight, I'm just broken and sad. And it may be tomorrow before these tears stop. Mommy loves you Khoen, and I miss you so much. ♡ Excuse typos, I'm on a phone.

Princess Makenna...

What a week it's been!

Makenna was sick and had to miss two days of school, as well as her dance class. Kaisyn is sick, and also had her 18 month shots, one of which swole up and turned red, and made her cry if she even had to use that arm for anything. Mikah has had a cold, but he's actually been pretty good, so I can't complain there!

But, that wasn't even what made the week so rough. Kids with snotty noses I can deal with...there are parents who have to deal with much, much worse on a daily basis, and keep smiling through it. So I'm thankful for the health of my little ones, and I'm not sweating over that.

What has made this week so "interesting" has been other things. I've been trying to do our Christmas shopping a little at a time, so that I'm not too overwhelmed financially all at one time. We can't go all out anyways, but we don't want Santa to be a complete disappointment! ;)

While I was just walking through the store the other night, I tried to start looking for what I was going to get for Mikah. Kenna and Kaisyn were easy to think of ideas for. They both have their toys they love, and we were blessed to have a sweet friend help us out a TON with Makenna's present, as well as part of Kaisyn's. But we didn't really have much for Mikah, except one little toy.

I thought shopping for Mikah would be fun, like a new kind of adventure. I've never had to go out looking for little boy toys before! I've always been surrounded by pink and babydolls and princesses. So I guess I thought it'd be a fun challenge to find boy things.

I never thought it through until I was in the store. And it only hit me because I would see little toys that had different "versions", if thats even what you call them. Like, two of the same toys in different styles or colors. And, of course, it put me back into I-miss-my-twins mode. I've been doing a lot better recently, and turning as much of my sadness as possible into just being thankful for Khoen, and that I'm his mommy. But boy do I wish I was buying presents for him, rather than trying to pay off his funeral.

I've been given lots of good ideas about ways to commemorate Khoen during the holiday season, and I'm excited to try some of them out, and see how they help our family cope. But, honestly, it doesn't really make shopping for Mikah any easier.

My mind can't help but wonder what Khoen would be interested in, and what would excite him at this age. Mikah is terrified of things that make loud noises, or toys that sing and dance. But would Khoen like them, like Kaisyn did? And Mikah loves things that make funny noises, and light up. Would Khoen, too? What would he play with, and would he be sitting up and playing just like Mikah? Or would be already be pulling up on things, since he was always a little ahead of Mikah developmentally?

Those questions just hurt so much. I know I shouldn't think that way, but it's impossible not to. I can be told, and tell myself, a million times that Khoen is happy, and had a great life, because all he knew was comfort and love. But I can't not miss him, and I can't not wonder. Mikah is his twin. T-W-I-N.

Gah, I actually have twins? Sometimes it still feels like just a dream, an amazing dream. A dream that actually came true, but then I woke up, and it was only just that....a dream. Make sense?

Probably not, but not many things that go through my mind do these days. I don't know. I just remember being so excited about this Christmas when the twins were born. We had just lost Grandmom and Grandad, and Dustin and I would talk about how the holidays without them were going to be so hard. But then we would laugh, and remind ourselves how busy we would be, and how much fun the kids would be by then.

We knew that Makenna and Kaisyn would be closer, just as they are. And we knew the twins would be into everything, and be so excited to see the lights and all of the fun Christmas things. Mikah is just that....into everything, and excited by everything. I'm sure Khoen is too. I just wish he was here to see it with me.

I'm really worried about Makenna, and it breaks my heart. She is such a sweet little girl. And she is so, so confused.

My mom had to feed the kids dinner the other night so that I could pick Dustin up. Makenna told her that she wished God and Jesus would just go away. When my mom asked her why she would want that, she explained that Jesus is holding Khoen, and if God had never taken Khoen into heaven, then mommy would be holding Khoen instead, and he would still be here. And that she would still have her brother.

Ouch.

I thought that telling her how much Jesus loves all of us, and loves Khoen, and how he has Khoen in his arms, all safe and happy in Heaven, was helping her. But, I guess it's just too much for her little mind to process.

To her, it seems like God "took" Khoen, and grandmom and grandad. And she thinks of him as the person who takes away people she loves, and pretty much holds them hostage in this place called Heaven, which she doesn't fully comprehend yet. She will tell you all day that she loves Jesus, and she says her prayers every night. She prays for people who are sick, and she thanks God for her blessings. But, she doesn't understand death. 

Most 4 year olds don't have to understand death. Most, if they are even faced with it at all, only have to understand losing one person at a time, for long periods of time. She lost 3 people who were close to her, and whom she loved dearly, in just 4 short months. We all did. And it's hard enough for me to understand and deal with, but I trust God, and I understand Heaven fully. How can I expect that of a 4 year old?

This morning, I was sad. Yesterday I found that some things were taken from me by someone I let into my home, someone I trusted. And it hurt. And, on top of missing Khoen, and dealing with Makenna's feelings, I was overwhelmed. Dustin got Makenna ready for school, and I was about to fix her hair. She sat on my lap, and just held onto my arms after I was finished.

She looked me straight in the eye, still holding my arms, and told me that when I start to go to Heaven, she is going to hold onto me as hard as she can, so she can go with me, because she never wants to live without me.

Such a sweet, sweet girl. Not to mention a floodgate-opener for tears! If only things were that easy, that simple. We could just hold onto our loved ones so tight, and either they would stay with us, or we would just simply go together to Heaven.

Makenna's teacher also told me this afternoon that yet another invisible friend, who is also a dead person, was playing with Makenna today on the playground at school. These kids play with her often, and that's part of the reason we put her into counseling. Her way of coping with the events that have happened in the past few months is by coming up with imaginary friends who are either dead, or have a brother or sister who has passed away. Most of the time, she says they are in Heaven. Today, she said "Ariel" was dead, then she was alive again. And that she didn't go to Heaven, that she was still here, even when she wasn't alive anymore.

My poor child is so, so confused, and it is so hard to watch as a parent. I took her with me to the mall after school, for some last minute picture items, and the mixture of her emotions, along with being tired from school, forced her into a COMPLETE meltdown. One like I've never seen before. Only once has she ever had a meltdown even close to that, and poor Ashley has had to witness each of them, haha!

While we were in Belk's, out of literally nowhere, she went from being so happy and excited over a cute dress she saw, to SCREAMING crying (I mean sobs, tears rolling down her face, the works....) and yelling that she misses Khoen. I was able to talk her down a little, and get her calm, and once she saw Ashley walk up, she recovered.

She was back to skipping around happy, smiling, being sweet little Kenna. We went into Children's Place, and she saw a cupcake hat she wanted. I told her if she was good, she may could get it. Usually, that is a perfectly acceptable answer to her.

Today, she wasn't having it. MELTDOWN. To where I had to pick her up, kicking and screaming, and carry her out of the mall. She screamed so loud and so much that she almost got sick in the car. If you know my Makenna, you know that is NOT her. She just doesn't do that.

I had her lay down in her bed when we got home, and talked to her about what happened. She was calm again by then, and told me how she knew she didn't act like a "big girl." She said she wanted to rest for a while. And when she got up, she wanted to call Ashley and tell her she was sorry for how she acted, too. Back to my little sweetheart.

I'm praying that we are able to figure out how her little mind is processing everything, and that I have the knowledge, strength, and patience to get help her through it. I want her to get back to her smiley place, where smiles are all she knows. She's too precious to be sad.

Tonight, I'm drained. We have our Christmas pictures in the morning, and I'm so excited about them. I'm praying the kids are all happy and cooperate for us! :)

Please keep sweet Makenna in your prayers. Just pray for comfort for her, and peace and understanding. Life has been unfair to us this year, but it is all in God's plan. And we will make it through!

Thankfulness, followed by updates!

Each morning when I wake up, I'm always curious as to how strong I'm going to be that day, and whether it's going to be a day of smiles, or tears. I never really know. On the days full of smiles and laughter, I still miss Khoen just as much. On the days full of tears and sobbing, I am still just as thankful for the life that I have been given, and the things in my life that bring my smiles. These things don't change just because some days are better than others, and just because some days I feel stronger. I don't think it's that I'm actually stronger, it's just that I can deal with my emotions in a better way. I've been really trying to work on that lately. Every time that I start to feel overwhelmed by how much my heart just breaks for my son, I turn around and thank God for making me his mother. I tell God how thankful I am for Khoen, and I tell Khoen how proud I am of him. This doesn't make the pain any less, but it does always make me smile, somehow. Khoen is SUCH a blessing. He is such an amazing little boy. And in ways, I am super jealous of that little cutie, because he has seen so many amazing things that I can only dream of. They are just too good to comprehend here on Earth. I guess my point is that this month, I'm trying to turn my pain into thankfulness. I am so incredibly thankful for Khoen. I'm so thankful for ALL of my children. And sometimes, in the crazy, busy, hecticness that is everyday life, I think many of us forget to actually thank God for our children. In reality, they are HIS children, just as you and I are. But he blesses us with the opportunity to raise them. And whether our children come to us through regular conception, adoption, fostering, surrogacy, HOWEVER they come to us, they are a gift, directly from Him. And that also goes for whether or not they are here with us on Earth, or in His arms in Heaven. They are still His gift to us, and we should be thankful each and every day. Without my kids, my life would be so boring. I honestly don't think I would even know what to do. Sure, breaks are nice, when we get them. But I wouldn't give up a day with them for anything. The silly things they do; the endless smiles and giggles they share with me; the way they listen so intently when I tell them stories, or sing to them; every little thing they do, I can't be thankful enough to express how much I love them, and how much they mean to me. They complete me. And in all this, I fully include Khoen. Khoen still makes me smile everyday. Whether it be by me seeing his sweet little picture (which is still the background on my phone, so I see in consistently!), or sending a butterfly my way, or by sending comfort and peace when I need it most; Khoen is still with me. He lives right here in my heart, and that will never, ever change. Sometimes it gets hard for me, because I start to hear those selfish human instincts in my head, and I hate them. We all have them, and all of ours vary. But whether its jealousy, or envy, or anger, whatever it is...I don't like any of them. But, we're human. It happens to the best of us. And I have to pray that God will just take those feelings away, and help me to open my eyes and my heart, and see that we are all different. And I have to accept that, and find ways around it, and ways to deal with it. Otherwise, I may as well just surrender, check myself into the 7th floor, and cut myself off from people in general. In other words, sometimes it gets to me that people take the word "family" so lightly. It seems like to some people, it's just a lost cause. No matter how hard other people try to do whats right, and make things better, its to no use. But, that's when I have to realize that just because my whole perspective on the word "family" changed when I lost Khoen, doesn't mean everyone else in the world's did. (And no, I'm not necessarily speaking of my family in general. This blog is just where I express my emotions. It's my "happy place", anywhere that I can just write my heart out. :) ) Family is so important to me. I want my children to have that same importance instilled in their little minds. No one is ever gauranteed another day; another chance to say something that needs to be said, or to express to someone how they feel. So, why not be there for your family, everyday, and just be full of love towards them? No matter how many friends come and go from your life, you're family doesn't change. Sure, new people are added, and the more, the merrier. And, people do go home to Heaven at times, but that doesn't mean they are gone, either. I feel like I haven't told my family enough how much I love them, and how much they honestly mean to me. So I'm yelling it right now: Whether you are my husband, children, mother, father, sister, brother, grandmother, grandfather, aunt, uncle, cousin, neice, nephew, extended family, anyone....I LOVE YOU, AND YOU ARE MORE IMPORTANT TO ME THAN YOU MAY REALIZE! Dustin and I took the kids to visit my grandma and grandpa tonight, and it was such a good time. They are truly amazing people, and we are so blessed to be a part of their family. While we were there, we were also blessed to get to see my aunt and uncle, Alisa and Greg, and my sweet cousin, Leah. And it was great to just get to sit and talk and laugh, and watch the kids play and have a ball. And while I was there, I was just reminded of my childhood, and how amazing it was. I can remember Christmastime when we were little, and being so excited to just get to see everyone. I remember putting on silly shows with my sister, and just enjoying the carefreeness of being a kid. I miss those days, but I'm so blessed to get to watch my children experience them now. I know I will get to watch plenty of little shows as my little ones grow and learn, and I can't wait! I'll never be too busy to be a good audience, and I can promise I'll always ask for an encore! Life gets in the way sometimes, and I don't get to see and spend time with the people in my family as much as I'd like to. But I hope they all know that they are special to me, and I am here anytime they need me. God blessed me when he put me into the family He chose for me. Changing subjects, but I also wanted to give anyone who's interested an update on the kiddos! Makenna is doing AWESOME, as always. She's too happy not to be! I had her parent/teacher conference Thursday, and she got a perfect progress report. I'm so proud of that girl! At home, she has had some issues with listening, and sometimes her emotions get the best of her. We don't hold it against her; she has a lot of feelings inside dealing with the losses we've experienced this year, and she isn't fully capable of controlling them yet. Her "imaginary friends" has been a big one; and for those who don't know, all of her "friends" have a baby brother or sister in Heaven, just like her. This has been her main way of coping with the loss of Khoen. She still cries at completely random times, and just asks for him back, too. I found an awesome counselor, who is helping her understand these feelings, and helping her find ways to get through them with her little 4 year old mind. Sometimes Makenna acts SO grown up; but in reality, shes just a baby, too. And that baby has dealt with a LOT this year, and handled it like a pro. I couldn't ask for a better daughter. Talk about being BLESSED! Anyways, at school that isn't an issue, and she behaves VERY well. So, she's learning a lot, and making her momma extremely proud. Go, Makenna, go! :) Kaisyn is more full of herself than ever. She is reallllly starting to test just how far she can push mommy and daddy before we put her in that bad place....you know, time out, haha. She has just now started to have to sit in time out occasionally, when she does the "big no-nos", like hit brother or sister on purpose, or throw her well-known "Kaisyn tantrums". And she actually does surprisingly well with it; she will stay in time out, cry a little of course, and come to us apologetically afterwards. And, it's helped her to realize that no, means no. And if you don't listen, you aren't going to like time out. So it's best to just stop when we say to! Kaisyn is smart, and knows how to use her wit against us. She can talk, and can mimic literally almost anything we say. But, will she talk around other people? I don't think so. Almost not at all. And she will give you this sly little smirk, because she knows she's just pushing that frustration button, haha! You have to love her though; she's just a mess! She goes for her 18 month checkup on Tuesday, and has to get shots. So pray for mommy, and daddy, too, since he took a half day off to help me out! It literally takes two people holding her down to let the doctor so much as look at her, because she does NOT like new, strange people. So I really needed the daddy assistance! Prayers for patience, please, and for a strong, sweet, little-big girl! :) AND MIKAH!!!!! Sweet, cute, silly little Mikah-man! He's just doing awesome. He can scoot, and boy, can he get wherever he wants to go, and quick! He can get into almost anything before you can catch him, and he is a sneaky little guy. And he has learned that if his sissy's have a toy he wants and he turns really mad and screams at them, they will usually give it to him in pure fear that they've somehow done something wrong! It's pretty hilarious, but we've had to actually tell the girls NOT to give in to him a few times...I don't want him to think he rules this house! But, he is cute, so he gets away with it a lot. And Kenna and Kais just ADORE him. Kaisyn is always patting his little back now, and kissing his head. And of course Kenna loves "babysitting" him, because shes such a little momma. (Don't worry, this just means playing with him while mommy changes Kaisyn, or is getting his bottle. She doesn't actually have to be in charge of him.) :) As we told everyone before, his test for GA1 was negative, thank God! The day that he saw his geneticist, we thought we would just be released from her care. But she did see 3 little brown spots on him that concerned her, because they are a sign of yet another genetic disorder that goes along with his head growing too quickly. But, until he gets 3 more spots, no more tests will be done. She said that he may never develop more, and even if he does, it may be nothing to worry about. So, we are just 100% enjoying Mikah, and not giving it a second thought! If you met him, you wouldn't be able to imagine a thing in the world being wrong with him; he's just too cute, happy, and healthy-looking. He's a perfect little blessing, and I'm glad I'm his momma! :) So that's our life right now. We are looking forward to all the upcoming holidays, and enjoying each day that we are given. We continue to pray for all of our friends, and strangers too, who are going through battles in their lives. And we are just thanking God that he made us a family! Well wishes to all from the McGinnis family! :)

If tears could build a stairway....

I can't sleep anymore. Every time I close my eyes, all I see is Khoen. I see him in my arms the last trip we took to my grandmas house, looking up at me while I held him. He had his little wubbanub pacifier in his mouth, and was in his little blue shirt. So perfect. So alive. I see him laying on my bed, after his bath, while I got him dressed in his pj's. Just smiling at me. So happy. So sweet. So Khoen. I see him asleep on my shoulder in the recliner downstairs. So peaceful. I miss him so much, and it hurts so much. I saw a twins 1st Christmas ornament in a store today, and it broke my heart. This year would have been my twins first Christmas. I don't get that. I am thankful to get to enjoy Mikahs first Christmas, and I know it may seem selfish to some people to say I don't get my twins first Christmas. But if you haven't walked in my shoes, and felt the pain of losing a child, don't judge me. I keep replaying the day we viewed him at McLeans in my head, too. It doesn't seem real. He was cold. Covered in makeup. And so, so still. Peaceful, yes. But not my Khoen. That memory hurts so badly, and makes me cry even more. When will this pain ever lighten? When will I stop crying instead of sleeping at night? When will I stop feeling sick every time I lay down? I'm also so paranoid about Mikah right now. I just keep listening to him in his crib beside me, just breathing. And it keeps making me wonder how a baby can just stop breathing, and there be no answer as to why? Why did Khoen just stop? Why does SIDS happen? Why does it even exist? I know no one can answer it. Only God. I don't want answers. Right now, I just want to rock my baby. I just want to kiss him. I just want a day when my heart doesn't hurt so deeply. This may be too much for me to write, but I am writing it anyways. If it bothers people, I'm truly sorry. But it hurts my heart right now, and I need to get it out. I painted Khoen a pumpkin for Halloween, and was going to put Mikahs handprints on it for his brother. But I couldn't do it. When the twins were born, they didnt have their footprints done, because they were taken straight to NICU. So I didn't have that from Khoen and Mikah, like I did my girls. And I'm all about handprint art, and just having those memories. When I found out Khoen had passed away, and was on the way home from Charleston, I was told he was taken to the medical examiners office, and would then be taken to McLeans. They asked if I had any special requests. Mine was just that I wanted my sons handprints and footprints, so I would always remember. I got his footprints from the amazing people at McLeans, but they couldn't do his handprints. His hands were too stiff, and were already curved, ready for him to be buried. Do you know how much that hurts as a mother? To hear that the little hand that I held only 3 days before that, was too stiff to do a handprint? To know that I will never have a handprint of Khoens? It kills me. Do a million paint handprints with your kids, every year. You will never regret those memories. I will always regret that I don't have them. In less than 4 hours, Mikah, Makenna, and Kaisyn will all be up, needing me. And I will be here for them. But I can't sleep. I can't stop crying. I NEED to hold Khoen. And it hurts so much that I can't. I'm thankful for Heaven, and to know I will again someday. I am trying whole-heartedly to give this to God, and to know He knows best. He knows what He is doing, and what his plan is, for both Khoen and I. And as much as I wish His plan had been for Khoen to be in my arms right now, I know His will is being done. Sometimes its just too painful to try and understand. Tonight, I am awake, crying for my son. Everyone is asleep around me, and all I see is Khoen. Big sweet eyes. Perfect round head. Tiny little nose. Just a little brown hair. Big sweet smile. Absolute perfection, and I miss it. I hope he knows how much I love and miss him. I wish I could tell him, just this once. Mommy loves you so much, and I'm so sorry. You deserve the best, and I know God is doing just that for you. You are perfect, and I will never forget a single thing about you. I love you, and as much as it may make me cry, I will never stop picturing you when I close my eyes. Sweet dreams, sweet angel. I love you always. <#

Struggling.

I've been really struggling lately. And I feel like I've had to "fake" my feelings a lot more often then I would have liked to. It's weird....I feel like even the stupidest little things seems to completely overwhelm me, and I'm not sure why, or how to fix it.

I guess I feel like I'm stuck in this "funk", and I'm not sure how to get myself out of it. So many things are different; so many things have changed. I don't know if I should feel happy or sad or what. And I am fully aware that this pretty much makes no sense. Bear with me.

I think it all started at the beginning of 2012. Knowing that my grandmother wasn't in the best of health, but was hanging in there. Knowing that I was about to become a mother to twins, and a mother to 4 children under 4 years old. Knowing that a new year was beginning, and I didn't know what to expect of it. Although honestly, I expected a lot more happy times, and lot less tears.

Is it true that death always comes in three's? Or does this just prove true for my situation. I'm not really sure. But when my grandad had his heart attack at the end of January, I honestly didn't think I would lose him.

Sometimes it bothers me that I didn't get to spend more time with him before he passed away. After his heart attack, while he was on life support and fighting with everything to stay here with us, I only actually went to see him once. It terrified me, seeing him that way. He was so strong; he was always so healthy. I don't even remember seeing him sick once in my life before that. I'm sure he was, he just always hid it so well. He was a warrior. He took care of my grandmom with a passion that made me admire him so much. He never complained, and he never wanted to quit. He loved her truly, and he would have done anything for her. I know it was hard for him to leave her; I know it was scary for him to let go.

Seeing him in a hospital bed, on a ventilator, unconscious....it hurt. And I wasn't prepared to see him like that. I don't regret visiting him; I just don't like to remember him like that. So I spent most of my time at the hospital with my grandmom, until I went into preterm labor.

That was really hard on me, too. Remember, I was there when grandad passed away. I heard the "code blue" called throughout the hospital. I heard them call for help when his heart stopped beating. But I couldn't do anything about it.

When I was released from the hospital that Monday, from my preterm labor, the first thing I did was went down a floor to visit grandmom. By this time, she knew that Grandad was gone, and she wasn't taking it too well. How could she? She had been married to him for more than 50 years, and didn't even get to see him for the 2 weeks prior to his death, when he was fighting for his life. She didn't get to tell him goodbye. My heart hurt for her.

Then, the twins were born. Such a blessing, and made me so happy. For the time, it overcame my sorrow, and all I could feel was love, and joy, and pride when I looked at those two sweet little faces.

I remember going back down to grandmom's room the day after my c-section, in my wheelchair, and showing her pictures of the boys. She was SO proud. She just beamed. From that day on, every moment I spent with grandmom was full of her asking questions about the boys, and wanting to know every little detail about them.

She wanted to see them so badly, but wasn't in good enough health to be wheeled to the NICU to see them. And, of course, with them being in NICU, they couldn't be brought up to see her.

When Mikah was released, she begged and begged us to bring him to see her. By this time, she had been moved to the infectious disease section of the hospital, and was being treated for something that they weren't quite sure what it was. So obviously I couldn't take little Mikah into somewhere where he could get sick, with him being so little still, and so fragile. He wasn't even 6 pounds yet.

Khoen was released on March 12, and once again, grandmom just begged us to bring both the boys. She wanted to see them so badly. She wanted to hold them, and love them, and tell them how much she loved them, and how blessed she felt to have them as her great grandsons.

I never got to take them to meet her. She passed away on March 19, 2012. It broke my heart. I felt so guilty for not letting them meet her. I blamed myself, and I felt terrible.

But, I focused on my children, all 4 of them, and I made it through, for them. We all went to the memorial service held together for grandmom and grandad. Even the boys. It was right before easter, and they wore their little easter outfits...the outfits that they had their pictures made in; the picture on Khoen's obituary.

As the days went by, things got easier. I knew that grandmom and grandad were together in heaven, and were looking down on us with smiles. I knew that they had seen the twins after all, and they were just happy being together, and pain free.

My life became a gigantic, hectic, happy schedule. I would write down every feeding, and diaper, and took pictures and videos galore. I was overjoyed. I absolutely loved life with my little ones. Of course it was crazy, and there were no dull moments whatsoever. I figured out how to get the girls started eating, feed both babies by putting them in one bouncer together and holding the two bottles with one hand while feeding myself with the other, and having me and the babies done eating in time to wipe the girls clean and get them from the table. Insane, but perfect. I loved it.

And sidenote, yes...things are still hectic with 3 kids around here, but it just isn't the same. It seems so dull. I don't like it.

Then, the infamous Charleston trip. The worst day of my life. Khoen went to be with Jesus. He went to be with grandmom and grandad, and to a place of happiness and peace.

And here I was; broken, crushed, sick. Even though I've had some good days since then, I don't think those feelings have really started to fade.

And maybe since June 2, I've still just been in shock. There's no other word to describe it. As reality sets in more and more, and I'm watching Mikah grow and thrive and seeing that Khoen isn't beside him, it has me in this depressed mood that I can't shake.

Lately, I just want to cry over EVERYTHING, and feel like a complete drama queen. Plus, I feel like I don't want to do much, because everything somehow makes me think of Khoen. And it just makes my heart hurt more.

Will I ever get out of this? Will this ever get easier?

I can't see it. But I know that it's in God's hands.

Also, the changing of people in my life has left me with feelings that I'm not sure what to do with. I feel so blessed to have some of the most amazing new friends in the world. I mean these girls (and their husbands, too!) are AMAZING! Always there for me when I need them most, and always having the kindest words when I'm having one of my worst days. I love them so much, and I thank God every day for putting them into my life. And I love my true friends, both new and old, and will never be able to thank them enough for their support.

I struggle with the fact that the people that I thought would always be there for me, just aren't. I guess time just changes people, too. And having kids puts a wedge between friends that don't, and can go out and do whatever, whenever.

It just hurts to know that people who I was always there for at the drop of a hat, no matter what they needed or what time of night, haven't been here for me. Maybe I just sound selfish, I don't know. I'm only writing it because its how I feel, and it really hurts.

And because these people meant the world to me, and knew it. And I guess its just hard to learn where you rank in the lives of people who ranked so highly in yours. Does that make sense? I don't even know. Either way, my feelings just got hurt I guess. But it's ok.

And anyone who has been in my situation can tell you (I feel) that it puts a strain on your marriage as well. Dustin and I just cope in different ways, and sometimes that makes it hard. But I am thankful that he is my husband, and that he is here for me. I know that we will get through this, and be closer and stronger because of it.

I will never understand why, but as Mercy Me says, "The healing doesn't come from the explained." So true. Even if I knew why, it would still hurt just as much to be here without my son. And someday, I WILL understand, and I will hold him again. No, I'm not anxious to leave this earth, but geeeeeezzzz I can't wait until that day. <3

I MISS YOU KHOEN!!!!!! I love you, my little angel!

It's the 7th of the month again...

Today, my boys are 8 months old. And once again, today is hitting me harder than October 2nd did. The 2nd meant that my little Khoen has been an angel for 4 months.

On September 27, Khoen had been gone for exactly as many days as he was alive. How unfair is that?

There are still days when I can think of him and just smile, and be happy, and have peace in knowing that my love for Khoen is so strong, he just has to be able to feel it in Heaven. And there are other days when its hard for me to even look at pictures of other peoples little twins, or other multiples, dressed alike and just so cute, and not feel like my heart has a knife stuck in it.

I can't believe that today is 8 months since I gave birth to those two sweet boys. As traumatic as their entrance into the world was, I would do it again in a heartbeat today if it meant I had another chance with Khoen. Another chance to hold him, and love on him, and just tell him how perfect he is, and that I love him so much.

Mikah has started to really try and sit up alone this week. He still falls over often, but he can balance for a few minutes, and it's a huge step for him. He has been so behind in development for his age, but on track for his gestational age. Technically, they consider him 6 months old today.

I can't help but wonder is Khoen would be sitting by now, too. Dustin and I talked about that yesterday, and both agreed that we think he would have. Kho started reaching for toys before Mikah did, and was more interactive in general than Mikah was. He smiled first, could follow you around the room with his eyes earlier, everything. So we think he would be sitting easily and playing by now.

The thought of him and Mikah sitting together, playing side by side with little toys, just makes me sick to my stomach. I'm not really sure why sickness is the way that I react, but I guess its mainly just because my heart hurts so badly over it, that it does make me physically sick.

Although neither of my girls had a twin, or a playmate while they were that young, I often feel like I am depriving Mikah somehow, because he is supposed to have that bond, and that constant friendship that he had in Khoen.

He was smiling in his sleep last night, and I just watched, wondering if he was dreaming about Kho. I like to think he was. Besides, he spent more time with him than any of us were able to, and he knew him best of all. I know he misses his brother, and sometimes its scary to me wondering if he can feel that emotion. I know, he's a baby....but that was his other half.

Mikah also had his first tooth officially break through this week! My baby has a tooth!!!!! And once again, I had to wonder if Khoen would have a tooth by now, too...or maybe more than one, you never know. I'll never know. That just stinks. :(

I'm not really sure if it's just the whole "it gets harder before it gets easier" thing, or if it's always just going to hurt this badly every time I think about Khoen. But lately, it's been so much worse on me.

Yes, it's still 4 months away, but the boys birthday terrifies me now. And I should be so excited about it, and I feel bad for not being. But it's going to hurt so badly throwing a party for just one baby here on earth.

I'm going to plan something to honor Khoen too, and hope that people will come celebrate his birthday with us, too. I'll say it again, because there are no other words; its just not fair. :(

With all of this genetic stuff going on with Mikah, and him having been sick the past few weeks, I've been an emotional and nervous wreck. Seriously. I'm terrified of losing Mikah, and my girs. Things that in the past wouldn't have made me think twice, scare the crap out of me.

Just like today. I woke up feeling really sick, and with a bad stomach ache. I didn't sleep well last night, because too much was on my mind. Actually, not really too much, just Khoen...and that sometimes is too much for me to handle and try to sleep. Plus, as I said, its their 8 month birthday, and Khoen has been gone longer than he was in my arms, and its all so overwhelming. So I'm not sure if its exhaustion and emotions making me sick, or if it's this bug thats been going around like crazy.

No one else feels sick right now, but the stomach bug is the one major thing that they do NOT want Mikah to catch. Throwing up is what could be so fatal for him, and thats so scary. Like I said, in the past, I wouldn't have been worried about it. We may get a bug, then we would get better and keep moving. But knowing that it could be harmful or fatal to Mikah to get a stomach bug just amplifies all of my nervousness by a million.

I can't wait to get back the official genetic results...about 2 more weeks!!! I am praying HARD that it is NOT GA1, and we can all just relax and enjoy Mikah for the happy, perfect little boy he is.

Him going back and forth to the doctor and hospital while he was sick was tearing Makenna up. She would make me promise her every time that he was going to come back home, and not  going to Heaven yet. It's not fair for my 4 year old to have such a fear of death at such a young age. Most kids her age don't even know what it is yet. And she has been hit by the death of 3 people she loves so much in just the past 8 months. Grandad, Grandmom, Khoen.

I think she likes having her angels, because she will tell us they are watching over her. But it has affected her so much. I am looking into some counseling for her, to see if it helps any.

Anyone who knows Makenna, knows she has a huge imagination. She has a few little imaginary friends that are with her everyday. Especially Anna, who goes to school with her, and her little classmates have even accepted. There's Anna, Jackson, Bella, and Bella-Screen.....dont ask me, I have no clue how she came up with these names. But those are her friends, or some days her children.

Her teacher even told me that one day last week, her and a little boy named Ryan in her class were playing, and Ryan told Mrs. Barbara that Jackson bit him. She was confused because there is no Jackson in her class. Turns out, he was also playing with Kenna's imaginary Jackson, who apparently got mad and bit him. Oh kids and their little minds!!

I am ok with Makenna having her little imaginary playmates, because they make her feel a sense of security, and she needs that. But, she tells us that the reason they are her friends is because they all have a brother or sister who has gone to Heaven. Thats why she likes to play with them, because they know how she feels.

That's hard on me as a mother, because I just want my kids world to be perfect, and full of life, love, and happiness. And her world was turned upside down this year, and I'm still trying to figure out how to turn it back.

Kaisyn doesn't seem quite as affected, but she's so young. If you ask her where brother is, she goes straight to Mikah and says her version of 'there he is.' But if you ask her where other brother is, she will either say 'i dont know', or 'byebye', and wave. She isn't quite big enough to grasp Heaven. But she does get so excited when we go to the cemetary. She will run straight to where Khoen is, and say "Hiiiiii!" so excitedly. She will blow him kisses, and touch his little picture that's out there, and knows where he is buried every time. We never have to show her.

So I know she understands a little.

I heard today that a little girl who I had been a part of her prayer circle, though she lives many miles away, lost her battle with cancer today. She just turned 4 years old in September. It broke my heart again, because I know how much pain her family is going through, and because it just ISN'T FAIR. I know that I didn't lose Khoen to cancer, but I feel like I want to do something to avocate more for childhood cancer, because too many kids are affected by this, and it has to stop. Just like SIDS. This has to stop.

Mom's and dad's, I've said it before and I'm saying it again. Please cherish every little moment you have with your children. I don't care if they have a terrible attitude, are so cranky it's driving you up the wall, whatever. We are all human, we all get frustrated. But remember that they are a gift, and a blessing. And each day you have with them is a blessing. And every time that you are just wishing so badly you could have a day to yourself and someone could just take your child off your hands for a bit, there is a mother and father out there longing so badly to hold their little one again. You are never promised tomorrow, and as unfair as it is, our kids aren't promised tomorrow either. That's the cold reality.

Today, Mikah is 8 months old. And today, my heart is broken over Khoen yet again. Happy 8 month birthday in Heaven, sweet boy. Mommy loves you so, so much. I miss you more than you know.

Can't wait to see you again, my little angel. <3

Mikah's Long Day

I woke up with a heave heart this morning for some very good friends of ours, Ashley and Steven. Today marks a year from when they went into labor with their sweet angel, Chloe. My heart just breaks for them all over again, and I wish I could wrap my arms around them and just make everything better. But I can't, so instead I am here beside of them, to support them in any way I possibly can.

The kids and I were supposed to go have breakfast with Ashley and some other amazing ladies, but apparently Mr. Mikah had other plans! And so started this long day...

I had baked my muffins for the breakfast, showered, and had the girls up and dressed. Makenna was supposed to be going to school, but I had already called her teacher and explained that she wasn't going to be there today.

Mikah had already been up for a little bit, but was playing happily in his bouncer while mommy got ready. When I went to get him dressed, I noticed that his eyes looked funny. They were red all around them, and a little swollen. He just didn't look great, and not like my happy little Mikah.

Upon picking him up, I noticed that he felt very warm, so I checked his temperature. He had a fever of 101.4, which just isn't good for my little guy. We are still watching him closely for this GA1 stuff, and we do NOT want to see him sick!

So I gave him some tylenol, and went ahead and let the girls know I wouldn't be able to make breakfast. Then I gave his doctor a call to let him know what was going on.

At our pediatric office, you leave a number for the nurses and let them call you back. And it didn't take them long to call, but while I waited I noticed that Mikah just really wasn't acting like himself. He wasn't very active, and just laid with his head on my shoulder.

Normally, Mikah is rolling and scooting everywhere, and will NOT lay down for anything! Yes, he falls asleep on my shoulder for naps, but he cries and fights it until he finally just gets too tired and gives up.

After being on hold forever while the nurse talked to the doctor, we got just the prognosis I expected: they wanted me to take him over to Levine's Emergency Room.

We walked in, our letter in hand, and they only left us sitting for a few minutes before bringing us back to the triage room to look him over. They did all the routine things, like checking his weight, blood pressure, etc. And sent us back to the waiting room until they had a room ready.

I wasn't happy about sitting in the waiting room in the first place, but it wasn't crowded at the time, and the 3 kids that were in there with their parents didn't look so bad off. Plus, we isolated ourselves as much as possible by sitting on the other side of the room.

But then, in walked a little boy with his mom, puke bucket in hand. That was enough for me, so Mikah and I decided we were waiting outside! My mom let the nurses know, and they said they would come get us when his room was ready. We just aren't taking chances like right now. My baby already didn't feel good. Plus, anyone who knows me knows I HATE puking. So we just enjoyed the cool weather and cuddled Mikah.

Once we got back into our little ER room, the "fun stuff" began. They listened to Mikah's chest and tummy, and looked him over from head to toe. The doctor ordered a urine sample and a chest x-ray.

A team of nurses came in with a child life specialist to do his catheter. Poor little guy, those things just aren't a good experience. The child life specialist was awesome, and brought some sugar water and a pacifier to try and divert his attention....but seriously, how can you ignore getting a catheter?!? Anyone who has had one knows...they just hurt.

So, of course, my little man screamed. Tear fest #1. :(

It only took them about half an hour to come back and tell us that his urine was clear, but they were also going to do a blood workup on him. Fortunately, there was a rocking chair in the room, so I was able to rock little man to sleep while we waited.

Next was his chest x-ray, and babies just don't tend to like those. I can remember when Kenna was only 3 months old and had RSV....she had to have a chest x-ray, and they had to put her in the "tubes". She was NOT a happy baby.

Mikah did pretty well, though, and didn't require the "tubes". He let mommy hold his arms up like a pro, but he did get a little upset because I couldn't let him move. Tear fest #2. :(

And as soon as we got back into the room, the same team of nurses was back to get some blood. They went ahead and put in an IV, in case they needed to give him fluids. Tear fest #3.....and the biggest of them all.

It took the nurse a little while to find the vein she wanted to use, and it took 3 of us to hold him down. Yes, my mom and two nurses had to hold him still, and I was trying to comfort him at his little head. He was just not having it. :(

But, he was ok again once he was back in mommy's arms. :)

By this time, he started to get a rash, almost like little hives on his little chest and back. The doctor thought they were caused by the fever, and had a nurse come take his temperature. It was starting to go back up, so they brought him some tylenol.

About an hour later, we FINALLY got the ok to go home!! The doctor said that all of his bloodwork was normal, and he had no increase in white cells, which would show infection. He has had a little bit of an upset stomach, so she said he may just have a little stomach bug, and just to keep a close eye on him.

We also got to meet Dr. Spence, the other genetic doctor, before we left. He also reassured us that Mikah's lab workups looked great, and he wasn't concerned at the time.

So we are just watching him! If his fever goes up high again, he throws up, or he just seems to be more miserable, we have to take him back over. Prayers please that this doesn't happen!! He wants to be at home with his sisters!

I think the hardest part of the day was leaving home to take Mikah, and kissing Makenna and Kaisyn bye. Makenna wasn't happy Mikah had to go to the hospital, and asked is he was going to come back home, or if he was going to Heaven. :,(

This whole situation has been so hard on her, and thats hard on me as a mommy. I promised her Mikah was coming home, and fought back tears. She is such a sweet big sister.

And while we were waiting in our little ER room, we heard a Code Blue called in Levine Children's Hospital. And that hit me in the gut for so many reasons.

First, when I was in preterm labor with the twins, a week after my grandad had his heart attack, it was about 6am, and we heard a Code Blue called in the Dickson Heart Unit. I commented to my nurse that I hoped it wasn't for my grandad, and sure enough, it was. And he passed away less than an hour later. So from then on I've known that Code Blue means someone's heart has stopped. :(

Hearing a pediatric Code Blue just tore me up. My heart hurt for the child, and for the parents, and family, and everyone who may be involved and love that child. It just isn't fair, and I have been praying since that they were able to save that sweet little one.

The girls were happy to see us when we got home, and I can't tell you how happy Makenna was to have Mikah back home again. She would NOT leave his side, and either sat on my lap with him while I rocked him, or laid beside his playmat on the floor. She loves her little sister and brothers so much, its precious. I am blessed!

Mikah is still very grumpy, but rightfully so...he had a rough day. And he doesn't seem to feel well tonight, so he is asleep on daddy's shoulder at the moment. It may be a long night, but anything to make my little ones feel better is worth it. I just pray we don't have any reasons to head back to the hospital!

Dr Lye explained to me that we have to go to the ER instead of his office even for little things like just a fever, because they can rush the tests there, whereas in his office they wouldn't have results until the next day. And there could be cases where that just isn't soon enough. So it will be ER trips for everything for now.

I'm just glad we are home now. The girls are sleeping, Mikah and daddy are sleeping, and I'm exhausted. So I'm going to go lay Mikah in his bed, and hit the sack myself.

Please say extra prayers for Ashley and Steven as they celebrate precious Chloe's first birthday in Heaven tomorrow. I know she is playing with Kho, and all of their other little angel baby friends, and having a blast. Just pray for peace of heart for the Friels, and all of us who love baby Chloe so much.

And thank you for your continued prayers for our little man! God is still so good!

Happy Thoughts

It's been a little stressful around here, to say the least!

Mikah has done amazing switching his formulas. I swear, he is a little pro. And he is just awesome....the dietician figured it would take us about 3 days to fully ween him off of his old and onto his new formula, but it only took him a day! That's my boy. <3

But he isn't so fond of waking up in the middle of the night to eat, so it's been a stuggle. He gets grumpy, and just mad that you are waking him up. That boy is just like my girls....he loves his sleep!

I was about to head out to Charlotte today to get his scale to measure out his formula, but then I got a call from his genetic counselor, who works along with his new geneticist. She said that they got back the results from the preliminary biochemical labs that they ran on Mikah, and that didn't seem to show that he has GA1.

We still have to wait 6 weeks to know for sure, because that is when his actual genetic tests will be back. But still, this could be amazing news!!!

Yes, if we get the results and he doesn't have it, we will be back to square one on both what is making Mikah's enzyme levels off, and on what happened to sweet little Khoen. But, GA1 just isn't good. And hopefully it is the worst case scenario, and anything else we may have to deal with won't be as dangerous!

So for now, we have one test that shows that yes, he has it, and one that shows that no, he may not. Our doctors want us to still stay with the new diet, and we still have to do the same thing when it comes to taking Mikah to the ER if he shows any signs of illness, with his note in hand.

But we are praying that the genetic tests will show that it isn't GA1! Statistics saying that people with GA1 only living until the age of 35 just won't cut it for this momma. My babies all deserve long, happy, healthy lives, and I'll do all I can to ensure that for them.

On another note, we are super excited about Khoen Day! I can't thank my friends Ashley and Taylor enough for planning this to help our family.

It will be exciting just to meet new people who are coming out of their way to buy BBQ and make donations in honor of our sweet son, who can't be there to give them a hug. But I can assure you Khoen will be there, and he will be beaming with pride at how many people are reaching out to help his family! God is so amazing, and the people who are helping us are incredible.

If you are coming Saturday and have already bought a ticket or made a donation, THANK YOU!!!!! And if you are coming and plan to purchase your food there, THANK YOU AS WELL!!!!

We will have the kids there for part of the day, but Dustin and I will be there all day! (Except when we make our delivery to Gastonia :) ) So please, make sure and give us a hug, so we can hug you back and thank you in person! You all are amazing, and we are more grateful than you will ever know. <3

The Scary Truth.

This morning we had Mikah's appointment with a genetic specialist. And we learned a lot about what is going on with our sweet little guy, but it was all very scary and overwhelming, to be honest.

The test that Dr. Jacobson ran on Mikah showed that he as a disorder called Glutaric Acidemia Type I. (GA1)

All proteins are made up of amino acids. And our body uses enzymes to break down these amino acids, and turn them into energy. But Mikah is missing certain enzymes, which means that his body just stores up these proteins that he can't break down, and they turn into toxins inside of his body.

The proteins that Mikah can't have are called Lysine, Hydroxylysine, and Tryptophan. (Lysine and tryptophan)

Both of these proteins are in the formula that both Mikah and Khoen were on since birth, which was Enfacare 22, the formula often used for preemies. So since birth, he has been storing up these proteins, and they have been, in a sense, poisoning his little body.

First we had to see a genetic counselor, and go through mine and Dustin's entire family histories. We talked about Mikah, and how his development has been, and about Khoen, and what happened with him.

Then we had to see the doctor. She is an amazing lady, and I feel like Mikah is in really good hands. She ordered another screen to be done just to confirm that this is truly what Mikah has, because it isn't extremely common. Only 1 in every 30,000-40,000 babies are diagnosed.

She examined Mikah, and looked at his development from what she could tell. She was mostly pleased with it, and said he is almost to where he should be, just to keep working with him daily...which I always do.

They taped a little bag around his private parts to catch his urine, so that they could run tests on it. But of course my little stinker figured out a way to pee right out of it and into his diaper, so it had to be completely re-done. And for the record, when a baby pees, it takes a while for him to pee again...

After that, we had to take him down to the lab for more bloodwork. They took 7 vials of blood from my little man. I know that may not seem like much, but it sure looked like a lot to me, complared to how little he is!

And our appointment still wasn't over. We had to talk to the dietician next, because they changed his diet TODAY. He is now on a formula called Glutarex, which she warned would be hard to get him to drink. And if you look online from the company (since glutarex can't be bought in grocery stores), it costs $224 per CAN. A can will last you 4 days on his diet, just to show how expensive this would be.

Fortunately, the dietician said that they always go through WIC to get this formula, so we won't have to pay for it. What a blessing, and a relief!

Anyways, this glutarex doesn't have either of the two proteins that he can't break down. But, we have a strict recipe to follow, because we do still have to mix in a small amount of his old formula. Not enough to hurt him, but enough so that he is getting all of the nutrition that he needs.

He can eat the baby cereals, fruits, and some vegetables, but all only in moderation. (I now have a chart hanging on my fridge.) But he CAN'T have anything that contains milk, cheese, eggs, or meat right now. Not to big of a deal, as he is still so little.

The doctor said that by staying on the diets given to us, and being VERY strict about it, Mikah should be able to relax a little on his eating by the time he is 7. But he won't even be able to try chocolate until then. :(

And for the record, at 1:30pm he FINALLY peed in his bag, so that we could go home...3 and a half hours after the appointment started!

The risks of GA1 are what is so scary. Had we not caught this, Mikah could have suffered a "metabolic crisis." And in people with this disorder, that can cause strokes, comas, permanent brain damage, and death.

Brain damage is the biggest concern with GA1. And even while he is on treatment, he has a 35% chance of suffering brain damage of some kind, from moderate to severe. THAT is terrifying. :(

But we have no choice but to be thankful at this moment. I wish we had caught all of this before Khoen had to suffer from it, but Mikah is here, and he is ok right now. And he is on his diet, and we are going to do all we can for him, to give him a normal happy life.

The dietician said that we can wean Mikah onto his new formula, but to do it as quickly as possible. She said to start with 1oz of glutarex, and 4oz of enfacare. So that is what we did for his 9pm feeding.

The other thing that makes all of this so scary is that if Mikah were to get sick, it could very quickly put him into a metabolic coma. And even if he were to come out of his, he would have severe permanent brain damage from it.

The main thing we have to watch out for is the stomach virus. Mikah can't tolerate throwing up. If he gets a cold and has a fever, as long as he is still eating well he should be fine, and get through it. But if he starts throwing up, we have to take him straight to the hospital.

We were even given a note that we have to carry everywhere. We literally have to keep it with us at all times. And if anyone watches Mikah for any period of time, no matter how short, they have to have a copy of it. And if he shows any sign of illness he has to be taken straight to the ER at Levine, and the note must be given directly to the staff.

The note states that Mikah has GA1, and that he is extremely high risk. It says that if he shows any signs of being ill ie. throwing up, lethargy, fever, loss of apetite, dehydration, pretty much anything where he may not be getting proper nutrition, he is to be admitted into Levine Children's Hospital, immediately hooked up to IV's and given fluids, sugar, and nutrition, and observed. They are also to call in the genetic specialists there at Levine, and if for any reason they are unavailable at the time, they are to contact the hospital at Duke.

My nerves are on edge, though, because Makenna is in preschool. And we all know how germs fly around those classrooms. My main concern is that she will bring home a stomach bug, because that is the thing that Mikah can NOT tolerate. And it terrifies me to think of him throwing up and possible going into a coma, and never having a normal life because of it.

The genetic specialist said that they have two other patients that have this disorder. One is a baby, whose disorder was picked up on his newborn screen and has been on his special diet since birth. And he is doing well, and hasn't had any issues.

The other is an 8 year old little girl who, at the age of two, caught the stomach flu. She went into this metabolic coma they have warned me about, and woke up, but is severely brain damaged. :(

So in all seriousness, as much as we love you....if you are sick, or have been sick, or just aren't feeling well, please don't come by to visit! Haha :)

I'm trying to just stay as positive as I can, but the doctors have fairly warned me that this is serious, and his dangers are real. So we have to be very strict, and he absolutely has to eat every 4 hours. No more sleeping through the night until who knows when!

But still, as I sit here with knots in my stomach, I know that I am about to go upstairs and just fully turn this over to God. He will take care of Mikah, and of us as his parents, and guide us on what we should do.

This is going to be a long journey for him, and something that will have to be watched closely all of his life. So please continue to keep him in your prayers.

We need Mikah here, and we need Mikah strong. And he is going to push through this!

And pray extra hard for a miracle....that his test they did today to confirm and further test which genes of his are mutated and caused this disorder comes back and says that he is fine, and it was all just a scare.

Doubtful, yes I know....but a girl can dream, and God is amazing. <3

ALSO, they confirmed for me that the state keeps babies new born screening tests for three years after birth. So, if their test does confirm what they believe to be true, they will call the state and ask that Khoen's newborn screen be run again, to ensure he did in fact have this disorder as well. If he did, his cause of death will be contributed to this.

And I know I wrote in another blog about how when Khoen was in the hospital, we considered transferring him over to Levine's. (Maybe I didn't, I dont remember, but either way, I'm telling you now. We considered it.)

We only considered this because after they did a spinal tap on Khoen, they didn't really do anything else. They just didn't really give us any reason as to why my son didn't wake up for almost 3 days, and we weren't happy about that.

The specialist today told me that they indeed should have done further testing, and considered something neurological. Had he been at Levine, the neurology team would have probably been called in, and we may have been able to catch it in time.

I know I can't dwell on the woulda-shoulda-coulda's, but its hard...it hits me in the gut, because I really cried over that while we were in the hospital. But we prayed about it, and talked about it, and decided we should leave him where he was. We figured they were the doctors, and they knew best.

But the thought that maybe I could have done something more to save him hurts my heart so much, because once again, I feel like I failed Khoen. And I would have done anything for that little boy, just as I would Mikah, Kaisyn, or Makenna.

Please pray for strength for our family as we get through this. We love you all, and can't thank you enough for thinking of Mikah on his big day. <3