A Conversation with Keeghan

I saw this idea on Pinterest and thought it was really cool! The point is to make a new one each year so you can remember what your kids liked that year. I plan on doing new ones every January. I only have Keeghan's completed so far because the 3 big kids are at school. I'll get theirs done this weekend.

I love Pinterest!!!

One Day Down...

I dropped Frank off at Ft. Carson at 10:00 last night. They were set to have their goodbye ceremony at 1:00am. Frank and I decided that it would be crazy to keep the kids out that late. They were already emotional and get more emotional when they're tired. So, we put them to bed at their normal bedtime and Frank said goodbye to each of them. Around 9:30, my friend Tiffani came over to sit with the kids, who I thought would sleep the whole time.

Kass got up right before Frank and I walked out the door. She said she had a bad dream and needed water... and maybe an extra hug from daddy. ;) Then we headed out to Carson. I helped Frank get his stuff inside and hung out for a few minutes and then we said our goodbyes. He didn't want me out until 1 or 2 in the morning and I have been to LOTS of goodbye ceremonies, so we agreed it would be best to just say our goodbyes privately and go on... it's probably a whole lot less emotional that way, too.

When I got home, Keeghan was awake, and not happy. He was crying and saying that his ear hurt. Tiffani said he had been awake most of the time I was gone. poor little guy. He climbed into bed with me and he slept horribly. Even the Motrin I gave him didn't seem to help. This morning when we woke up I asked him how he was doing and he said he was fine and wanted to go to school. Whew!

After all the kids were dropped off at school, I took Kellsey in for a barium enema test for Hirschprungs Disease. I've never had this test done, but it looks really gross and uncomfortable less than pleasant. She handled it well though. The good news is that everything looked normal in there and they said she doesn't have Hirschprungs. I didn't think she did, but it was still good to hear them say it.

After Kellsey's test we dashed back to Keeghan's school to pick him up. He said his ear was hurting again so I called their pediatrician and they were able to get him right in. His ears looked fine, so he said it could be some congestion draining into his ears or something. He seems to be doing ok tonight. They also reminded me that Keeghan and Kellsey both need their shots for Kindergarten. Keeghan was NOT happy about this news at all! We'll get them done eventually... but don't tell Keeghan!

After the trip to the pediatrician, we came home and rested for about an hour, and then Kennedy had dance class... Keeghan asked last week if he could try dance too, so he joined her tonight. He really seemed to like it! I guess we will enroll him and see how it goes. Kameron has been missing Tae Kwon Do because he got a part in his school play and they've been practicing after school twice a week. Thankfully one of his friend's mothers offered to take Kameron back to her house after practice so he could do homework with her boys until I got back from dance. When I went to pick him up, they were having a great time making an Angry Birds play. (They said I can even have a part in it! haha)

We came home and grabbed a quick dinner and now everyone is showered and bathed and we're getting ready for bed. Ahh! I'm praying that Keeghan will sleep well tonight and wake up refreshed in the morning. Tomorrow will be a little less hectic, which is a good thing!

As for Frank, we've talked a few times today. They went to San Diego this morning to pick up some Marines and then headed off to Alaska. Here's a picture he took while he was there... it's -3 degrees! Brrr!

I just talked to him a little while ago and he was getting ready to fly again to somewhere else. He said he's been fed well, the plane is only 1/2 full so he can stretch out, and hopefully he'll be able to sleep on the next leg of his flight. 

Thank you to everyone who has sent prayers and words of encouragement over this past week. I'm feeling much better about things even though I lost a "friend", and I'm going to keep blogging... maybe not every day, but when I have something to say (which may be every day! HA!). Thank you to those of you who love our family... I appreciate you more than you know!

Here We Go Again...

Tonight we begin another year of deployment. This is number 5 for our family... twice to Iraq, three times to Afghanistan. Every deployment has been different... more kids, the kids at different ages and different stages of awareness about what's happening. Frank has been in different locations at each time, which means different accommodations for him and most importantly, different forms and quality of communication home.

Last time was really hard because the communication there was horrible... he would try to Skype with the kids and the connection would freeze or drop completely which made Kennedy very upset. She didn't understand anything except that she wanted to see her daddy.

This time, we've been told, the communication will be good. It's well established. I am praying this is true because it makes things so much easier. I am thankful for communication, for technology. I think often about the Army wives before me, in the days of the World Wars, the Korean war and even Vietnam when they eagerly awaited letters... sometimes coming weeks apart. Never knowing if their husband was alive, or hurt, until long after the fact. I am so grateful to all of them for paving the way for our country and our military now. They inspire me and help me get through each deployment with my own husband.

Kassidy and Kameron are strong. They amaze me. They are so proud of their father, yet they worry too. Kassidy takes on the role of the oldest well. She protects her siblings. She hugs them often. Even when she feels like crying, she hangs tough. And she helps me. Sometimes too much... but I love her and I appreciate her and her sweet spirit. Kameron has blocked all deployment talk out. He may be in a little bit of denial. He was literally surprised when Kassidy reminded him that daddy was leaving today, even though we've been talking about it for weeks. He plays everything cool... like the big kid that he is, but sometimes the little boy inside comes out and you can tell he is scared. No matter how much I try to protect them from the news, they know. They know that sometimes daddies just don't come home.

Kennedy is understanding in small doses. She knows that daddy is going to help people. She knows he won't be back for "lots and lots of days". She knows that when he does come back, we are going to California. And that makes her happy. She gives big hugs and kisses and wraps her arms around anyone who needs a hug. "It will be ok..." she assures us. We talk about how she will get to see daddy on the computer... and he will talk to her and check in on her, and make sure she's being good at school. "And he'll watch me dance?!" she questions. Yes. He will watch you dance. And he will smile and call you a princess.

This is the first deployment where Keeghan is really aware of what is happening. We've been talking about it for some time. He's had lots of questions, lots of anxiety. When he hears the garage door open, he will come running, tears in his eyes, wondering who's leaving the house, where they are going, and when they are coming back... and please oh please give him a hug and kiss before you leave. I'm not sure what the next few weeks will bring for him. He's just a little guy who loves his daddy... and it's going to be hard for him. 

Kellsey is blissfully unaware. She doesn't understand. Doesn't know. She will go to bed tonight just like always and tomorrow she will get up just like always and go about her day. Will she look for him? I wonder. Eventually will she wander around the house, looking for her dad who usually sits in the chair next to her while she scribbles on her magna doodle... and will she wonder where he went... why she only gets to see him on mommy's computer? I don't think she will understand. She may have it easier than the rest of us.

My kids are strong. Tomorrow we will wake up and we will begin our new routines. We will go forward, getting everyone where they need to be, when they need to be there. We will all pitch in and keep the house running and we will smile. And we will laugh. And we will make memories. And take lots of pictures to send overseas. And we will get through the next year one day at a time... looking forward to skype calls and phone calls and R&R... and we'll watch this circle go from red to green... because green means that daddy is coming home.

Please be praying for Frank and his fellow Soldiers as they start this journey once again. One year. We can do this.

Blogging...

I have been thinking a lot today about this blog. I feel like it's being neglected. I went all last year and didn't miss ANY days blogging until November when we went on vacation... after that I kind of gave up. And now I feel like I have nothing to say. Of course that never lasts long. ;o)

I have thought about closing up shop, calling it a day, and sticking to Facebook (and my new found love of Pinterest! haha). I'm just worn out. I'm tired of having to think before EVERY post, "Who's going to judge me for what I'm about to say?" or "Who's going to pick apart this cute video of my son and find something to insult my 4 year old over?" or "Who's going to freak out that I don't post enough about the older two, and instead of realizing I'm respecting their privacy, they'll accuse me of not loving them enough, and even when I DO post about them, their posts are pretty much ignored which makes them sad, so why bother?" or "No matter what I post or what I do, even though some of you know my heart, people who I thought were friends are out there spreading horrible things about me."

I read somewhere that what other people say about you is none of your business. And I like that saying, in theory. But it's really hard when I get comments on my blog picking apart my innocent children or people questioning my motives behind what I do, or heaven forbid I post more about one child than the other... and really, when you insult my children, it IS my business.

I am also fully aware that all of this... crap... comes along with blogging. Eventually, no matter who you are, someone is going to come along who does not like how you parent, how you talk, how you write, how you think, what you post... whatever. I closed down anonymous comments a few months ago, and that's helped a lot because no one seems to have the guts to leave their name to back up a nasty comment, but then in passing, I find that someone who I thought was a friend was really trashing me... and has been for years. And I'm sure there are more.

There are a few purposes to my blog...
1. To keep my family and friends who we don't talk to every day updated on our lives and our children's lives.
2. To bring awareness to Down syndrome and childhood cancer and International Adoption... it may not be all positive information, but it's real and true; and no I don't know everything, but I know if I post a question, someone out there will have the answers. It's been so wonderful being part of this Down syndrome community... one where I've received support and prayers and ideas and love over the years... and hopefully I've returned that to others.
3. To keep my husband up to date and informed when he's deployed... and we're heading there again soon.
4. It's a place for me to vent... like I am doing tonight. It's a place for me to rant about news articles or whatever I feel like talking about at the time... And I thank those of you who have indulged my soapbox for so long. :o)
(And that list was really more for me as a reminder than for all of you..) ;o)

But now... I'm not sure what to do. I've thought about turning off ALL comments (but that doesn't really stop people from talking behind my back, does it?). I've thought about going private, which seems to be the most logical thing to do, but every time I get an email from a mother who found my blog because their baby just was diagnosed with Down syndrome or Leukemia or AOI or CIPA and wants to talk about their experiences or has questions about our experiences, I think that going private is not the right thing to do. If I can help other parents on this journey we are on, then that's amazing. That's what I want to do. SO many parents helped me when Kennedy was born... and I want to pay that forward forever.

I don't really know what the point of this post is... except that I'm worn out. And I'm sad. And yes, I'm having a little bit of a pity party stemming from the hurt caused by this "friend". But I'll get over it, I promise. And it's going to be a really long week for all of us. Anyway, those are my thoughts for tonight... take them for what you will... because they're probably not worth much ;). And if something in this post offends you, which I'm sure it will to someone out there, let me apologize right now for being me. Because apparently to you, that's never good enough.

Nuff said, pity party over. Back to life.

Mindless Babble...

I'm still here. We were wiped out after Kennedy's competition yesterday. It was crazy and busy and there were tons of people there, but we had SO much fun!! Kennedy's dance team won first place for their category and first overall. :o) She got a pretty gold medal. Her dance academy raked in the awards... lots of golds, silvers and platinums! They had more today, and I'm sure it went great!! The older kids work SO hard! Many of them were in 4 or 5 dances plus had solos. They are amazing! Kenn's next competition is the end of February. I'm not sure where that one is, but now that Kennedy's had a taste, she's excited and ready to go again! :o)

Today we went to church, spent time together, and then I met a friend for tea (does that make me sound British?!) and when I came home from that, we all went over to a friend's house for dinner and to watch the game. Sadly, the 49ers lost. *sigh*


Anyway, now I am editing pictures from the Family Dance and getting ready for bed... it's going to be a long week. I'll get some pictures up soon!

Let's Dance!

We had a great day today! Kameron and Kennedy's school puts on an annual dance, and since I signed up to help at events with the PTA, they asked me to help... then they asked me to be in charge! I was a little nervous since I've never been to one of these before, but I had lots of help and it turned out GREAT! We did a Welcome to Paradise theme and we decorated the gym and cafeteria in a Hawaiian theme. There were probably 500-600 people there... I tried to count a couple times but... everyone kept moving! LOL

Kameron took off with his friends... I saw them running around a few times and they stopped by for goofy pictures; and Kennedy ran off with her friends too. I was in charge of taking family and friend pictures, and Kennedy showed up in my line several times with different kids... some of them were a lot older than her! Haha! She's obviously very well loved. :o) Keeghan loved the dancing and was super excited to see his teacher there, turns out that she has a daughter at their school, too. Frank hung out with me while I took pictures and kept track of the kids as much as possible.

Kellsey was not feeling so hot, so she stayed home with Kassidy, who wasn't interested in going anyway. I think she just has a little head cold, but we thought we better not take her out in the cold if we could help it. Hopefully she'll be feeling better in the morning.  

Tomorrow we will be getting up bright and early to take Kennedy to her first dance competition in Denver! We are all so excited to see her on the big stage, and she can't wait to get out there and dance. She's been practicing hard with her group and they're looking good. :o)

I have some pictures from the dance tonight and I'll have pictures from the competition tomorrow, I'm sure, but for now, I am beat and I'm going to bed so I can wake up early! ;o) Hope you all had a nice Friday!

Homework

Remember last week when I talked about Kennedy and how well she's doing in school? Well, this week she's decided that she doesn't want my help with homework anymore. "I can do it myself!" she said.

Awesome. Go for it.

I have to admit I was a little afraid of what would turn out... the girl can be distracted by a fly! But, she worked hard, stopping only to tell me, "I'm NOT finished!" about 20 times. I DO still have to help her with math, that requires extra concentration and some prompting from me, but she's catching on quickly... maybe at some point she'll be doing all her homework totally by herself! :o)

Here's some pictures of her homework from this week... look how far her writing has come along since the beginning of the year! All those right side up e's. :o)

Carefully writing... 

All by herself!! 

I did help her with the spelling on her sentences... she chose what she wanted to write, though 

and chose the correct punctuation mark for the end. 

More working...

And some math... the dominoes are her favorite! Easy and fun! 

I love my girl... even if she IS kicking me out of homework time! haha

All About Keeghan

I feel like I've talked about Kennedy and Kellsey a lot lately, so this post is all about Keeghan! :o) First, a Keeghan quiz... it should be pretty easy for you long time readers. ;o)

1. What is Keeghan's favorite animal?
2. What is Keeghan's favorite color?
3. What does Keeghan want to be when he grows up?
4. What does Keeghan want to name his first daughter? (Bonus points to the person who gets this one!)
5. What is Keeghan's favorite food?

First, here's a picture that Keeghan drew tonight... Do you know what it is?

This is Keeghan's lemonade stand. Keeghan says, the top row, in order, is Keeghan, Kennedy, me and Frank (he gets to hold all the cups) and below are Kassidy, Kameron and Kellsey... they are buying the lemonade... which Keeghan insists is tea! haha Only $1.00 a glass, what a bargain! :o)

And here's a video from tonight... Keeghan brought down this key that he got awhile ago and told us this great story about Keeghan the Monkey King. I tried to get him to retell it on camera, but it will never be as good as the original. He is still flipping cute though!





Hope you enjoyed this tiny bit of my little guy! Good luck on the quiz! ;o)

Stained Glass Windows

In the last decade or so, Frank and I have made a lot of friends who are musicians... some of these friends started out with us in our college choir, others we've met along our journey through different towns, different churches, and many different venues. If you were to look at our CD collection (yes, we still have CDs! HA) you would quickly find that we know over half of the artists personally. Their friendship, and their music have been gifts to our lives... and we feel so blessed to know the stories behind many of their songs. We were there... praying for them, rejoicing with them, sometimes crying tears of heartache with them as we waited to see how the Lord would use the trial they were facing for His glory.

Our friend Daniel Doss used to be the worship pastor at our church in Tennessee. I loved it when he was on stage, because I knew that he could really lead us into a heart of worship. I also loved when he performed with his band because... well... he's awesome! Mostly, I loved getting to know him and his wife Emily... we were in our adoption processes at the same time... going in two very different directions... yet we'd eagerly update each other and pray for each other...

When Daniel and Emily moved to Indiana to plant a new church, we were sad to lose our friends, but everyone in Clarksville rejoiced when they finally got their baby boy after a long road of heartache. I have been constantly inspired by Daniel and Emily's faith, their openness about their journey, and their perseverance.

Next week, Daniel's song "Stained Glass Windows" is going to be released on the radio. This song talks about shattered dreams, hope, faith and love. Before you listen to the song, listen to Daniel and Emily's story in Daniel's words... It's a true happily ever after story. Then go listen to his song... you can buy his album on his website or on iTunes (you can even order a CD!) ;) Thank you, Daniel and Emily, for always being a shining light in our lives. :o)

Q&A #229

I think you said once that you don't cook. What do your kid's eat for dinner then? And if Frank cooks, what do you do when he's deployed ? Takeout?
Hmm, I believe I said that I do not LIKE cooking, not that I DON'T cook. Frank cooks sometimes, I cook sometimes, sometimes we just do a "choose your own meal from the pantry or freezer" night and I'll get it made. We eat a lot of meals from Schwan's. LOVE them... quick and easy, especially for school nights. On Thursdays it's dance/tae kwon do night and we get Chic-Fil-A, and we go out for lunch on Sundays. Not really sure what that post had to do with my cooking though. ;)


Ok, dumb question, but what is a para? I assume that's short for para-something. Too early in the morning for my brain or maybe it's a new term I'm not familiar with. :) 
Sorry! It's short for paraprofessional and some schools call them educational aides or just aides. :) Basically, someone is with Kennedy during all of her academic times (not lunch, recess or specials) to help keep her from getting distracted (which she does SO easily) and help her with anything she needs help with... this makes sure that her classroom teacher can focus on teaching and Kennedy still gets the extra help she needs to succeed in the inclusive classroom. Typically, kids who needs aides (or paras) have one who stick with them all day. Kennedy has 4 who rotate. I wasn't too sure about this at the beginning, but every one of the ladies who work with her are amazing and they're all so different. They each help Kennedy in different ways and she loves them all! 


How long before Frank leaves? Just wondering if you were going to be getting results back before he goes. 
Actually he won't be here for any of the results... and that's all I can really say about that. 


Not sure if you read Ella Grace with the Pretty Face but she has the same thyroid thing going on and was diagnosed with Graves. You might use Kacey as a resource on that little portion.
Kacey and I have been talking. She's been a huge help. Thank you! :o)


Megoblastic anemia (which causes high mcv) can also cause low white blood cells.Treatment is vitamin b and is pretty easy to fix. It's usually seen in patients with celiac but I am sure if Kelsey is having absorption problems that could be the cause. Prayers that it's nothing!
I've also heard hyperthyroidism can cause a high MCV, so that's encouraging to me! Her Vitamin B levels were normal, that's another thing they tested, so we will see what they say at Endo. She also has a GI appointment on Tuesday and she had mentioned a biopsy for celiac's at her last appointment, so we'll see what she decides to do. 


Where did you get all the awesome little Angry Birds out of curiosity?? We have allllllllll the plush toys (in 4 sizes...*sigh*), but I've never seen little plastic ones!
We actually found them on eBay. I did a quick look to see if there are more and didn't see any in the first 100 results or so, but that doesn't mean they aren't there. They're actually like a plaster... they're really hard, but they're all hand painted and so cool! 


You should get them the Angry Birds Knock on wood game. Then they can actually send the birds flying and knock things over. Its only like 15 bucks at Target.
I saw that when we were Christmas shopping, but I wasn't sure if they'd get the same thrill out of playing Angry Birds when it wasn't on their iPods... obviously I was mistaken! haha That might be a good Valentine's Day present! :)


When I was hyperthyroidism I had heart palpitations and lost weight is she having any of those issues?
Well, it's hard to say with her heart, because she has a heart defect anyway, so her heart never beats correctly. She has not lost weight, in fact, since her g-tube was put in in October, she has gained about 11 pounds. But I don't know if the G-tube would... override the weight loss that usually happens with hyperthyroidism?? I don't know... just wondering. Before her g-tube was in, she had a really hard time gaining weight, but she also didn't eat well... so it's hard to say all the way around. 


Hyperthyroid can cause weight loss, tremors, nervousness, fatigue and trouble sleeping. One of the most annoying things about thyroid issues is that they can often be overlooked or run concurrent with other things and it can be so hard to tell what is the thyroid and what is something else.
She has been having tremors. They actually asked about that when I called to make the appointment. And you're so right, because we were thinking the shaking was related to whatever neurological issues she has going on, but maybe not... She definitely has trouble sleeping which is really how this whole thing started. We just need to figure out what is what!


Also do not know if you had heard that Aaron Shust wife delivered a baby boy at 37 weeks in NICU diagnosed with Down Syndrome and AV defect waiting on surgery.
I did hear that!! We have been praying for Michael as he gets ready for surgery. You can see his sweet picture here and read his birth story. He's beautiful!

Quality of Life

That's a strange phrase for some to hear. "Quality of Life." Yet, it's one that has passed my lips several times in the last 3 or 4 years. Quality of Life. Who decides, exactly, what that means? Certainly not the Ukrainian hospital, who 5 years ago told two very scared parents that their newborn baby girl would have "no quality of life". Because of their words, those parents left that baby... alone. In a hospital. A month later, she was moved to an orphanage... and her parents never saw her again.

The director of the orphanage again said, "no quality of life" and on her 4th or 5th birthday, that baby would be moved out of her baby home and sent to an institution. It would be dark, and cold, and dirty. She would not receive medical care or much food or water. She would be left tied to her bed, not allowed to run outside, like most 5 year olds love to do. There... in that institution... she would then truly have had no "quality of life". 

Thankfully, God spoke to our hearts and told us, "Go get your baby. She needs you." And two years ago, we did just that. But there are small children in other countries all over the world who are suffering the fate of an institution, just because they have a physical or mental handicap. They are robbing these children of their "quality of life". 

Then there's Amelia Rivera. She has Wolf-Hirschhorn Syndrome. If she doesn't get a kidney transplant, she will die. Plain and simple. But unlike all the children I spoke of earlier, Amelia lives here, in the United States. She lives in a country where children with disabilities thrive. The most diverse country in the world. You see handicapped parking spots at every store. Almost every school has accommodations for children with Special Needs. There are programs and developmental doctors and therapies to help them thrive in every area of their lives. How lucky for Amelia that she was born here! Right? 

Wrong. 

You see, Amelia's doctor at the Children's Hospital of Philadelphia, has decided that Amelia Rivera does not qualify for a kidney transplant. This is not because she's too sick and wouldn't survive - she would. This is not because she doesn't have health insurance - she does. Her doctor's reason for denying Amelia this life saving surgery is because HE believes that Amelia has "no quality of life". 

Amelia Rivera

Imagine how her parents felt, sitting in a room at the hospital hearing a doctor tell them that their daughter shouldn't be alive. She's not worthy of "saving". She's better off dead. 

And when her parents said they would fight for their child, they said, "I have been warned about you. About how involved you and your family are with Amelia." 

Warned. About parents who are TOO involved with their child. Warned about parents who want their little girl to live. Warned about parents who want the same medical care for their child as any other child in the United States. 

Shame. On. Him. 

When doctors get to decide whether or not a child is "worth" a donated organ, when they can look a parent in the face and tell them to just let her die, we are NO better than Ukraine or Russia or Serbia or any of the other countries who lock children with SN away and let them die. Children's Hospital of Philadelphia should not be able to get away with this, and this is my plea to help the Rivera family in the only way I know how. 

There is a petition here that hundreds of parents have signed already. Will you please go sign and let CHOP know this is NOT ok? Will you go to CHOP's Facebook page, and let them know again that this is NOT ok. Ironically, their motto is "Hope Lives Here" apparently only if you're a typically developing child... who will have "quality of life". Let's be loud. Let's stand together for Amelia, and for all children in this country with special needs. And let CHOP know how much quality our kids really have. 

God bless you, Rivera family. Thank you for being amazing advocates for your daughter! I hope she has many, many more years here on this earth.