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What a day!

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Today started off so good, Bo was in such a great mood playing and laughing! It all came to a crashing halt when he got out of surgery! He ended up being in recovery for 2 1/2 hours trying to get his pain under control! They had to biopsy the right lung up high,which is the same side his port was removed, my poor baby has had 2 super painful surgeries a week apart! He has to have his chest tube until tomorrow, we’re hoping it comes out tomorrow morning! When we finally got to the PICU they have manages to put him on a pain med drip, which I’m hoping will make him sleep until tomorrow! I’m so glad this day is almost over I hope it’s. It a long night! Thanks again for all of your thoughts and prayers! Wee appreciate it so much!

C

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November 7, 2013 - 8:29 pm

nola watson - Praying he is able to rest tonight and that he is better very soon. Bless you all!

We will not be defeated!!!

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Today has been so frustrating!!!! So we have talked about if all goes well with his port sight and the packing we may get to go home tomorrow? Today they wanted to do a follow up CT scan of Bo’s chest and abdomen to compare to the one in June!?! He has been on 4 months of antibiotic therapy for his MAC, his Last bone marrow biopsy On Sept 26, so far is clear of the MAC, which is great means the meds are working! Today on the CT scan in his liver it showed the same a few granulomas but not inflamed, but his right lung has a few new nodules?!? What the heck!! What does this mean???? What this means is Thursday Bo has to have another lung biopsy. To say I’m disappointed is beyond how I feel. I’m trying to not let it feel like the entire wold is against us, I’m trying to believe that this is the best thing for Bo, I’m trying not to feel sorry for myself… But the reality is I’m sad,angry and disappointed. I miss my husband. Leksi, Johnny and Brookie. So does Bo, I’m pissed that my poor baby has to have this terrible procedure followed by a chest tube and 2 days in the PICU mostly sedated, I’m sad that he already has a gaping hole in his chest that is trying to heal! I WONT LET THIS DEFEAT US.. 2 steps forward 5 steps back, we are to close for me to lose my focus now! I know that it could be so much worse! I had to spend a good 20 min tonight by myself and pulled myself together, for my family for my son! I hate days like today, they suck! I know in my head it’s what needs to be done but in my heart I’m screaming NO for Bo’s sake! So this is what the plan is, it sucks big time, since they are “squeezing us in” Thursday he won’t have surgery until afternoon!!! Seriously after freaking noon?? Which means he will be NPO, nothing to eat or drink after 2 am! Yep 2 freaking am, how in the world am I supposed to tell my DIABETIC child that he can’t drink or eat!! He drinks more then most kids, it’s s side effect of his diabetes. This is one of the worst part for him when it comes to him having any procedure. It SUCKS! I feel so sorry for our nurse that day, because he isn’t a happy camper!! It will be around a 2 hour procedure, he will then be takin to the PICU to recover. Since he will have a chest tube( terribly painful, we hated the last one ugh) he will be mostly sedated the rest of the day and into the night Thursday. Tomorrow he will have his port repacked and hopefully it looks ok because if it doesn’t they will clean it good and pack it again in the OR Thursday! Clearly this is not what we wanted, we’re hoping and praying theses biopsies show the exact same thing as it did in June! Keep my sweet boy In your thoughts and prayers it’s going to be a long 2 days!

C

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November 6, 2013 - 10:17 am

Traci Pastine - Dear Carolyn, as a mother myself of two boys I would do just about anything for them. I grew up with your husband and I know if he could be there with you all he would. I admire you strength and efforts of you doing what you can for your little boy. Your family and supports are always there for you. Stay strong, and my family prays for you all every night. We are hoping that you and Bo will soon be able to put these memories behind you and move forward. You do have a strong little man. I believe he takes after his mom you are one strong lady. You are doing the right thing. I know at times it seems like everyone is against you but the truth is they are with you the whole time. Keep your head up, soon this will all be a memory that you and Bo will be able to talk about in the future. Spend all your time getting him better. Be strong for you Bo he needs you the most. I hope that your kiddos and husband will pay you a visit and help you stay strong.

Take care and sending all our love and prayers to you all.
Traci Pastine (Traci Butler)

Surgery…

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Bo went in at 7:30 to have his port removed. They are worried it has the Micro bacteria infection on the surface of the port! So the safest thing to do was take it out! Boo for another surgery but glad it’s over! He had a IJ line placed in his neck to get us through the hump, not the most ideal place but it will have to do for now, I keep telling myself it’s temporary! He is still very jaundice so we’re waiting on some lab work to see why? Today at 1:30 I will address all of the media about NIH and our amazing BE THE MATCH NIGHT THIS FRIDAY AT SHAWNEE MISSION NORTH FOOTBALL STADIUM, we hope you can make it by to get your cheek swabbed! I try so hard a Bo mom to keep my head up, stay positive but there are some days that are just really hard! Hearing he had to have his port removed was like a punch in the face, I hate that he has to have yet another procedure being a parent can be so hard, yet so rewarding! When we walked back to recovery and his eyes met mine I knew we made the right decision, if it’s filled with MAC then it very easily could have been making him sick! He is resting after getting some pain meds and I’m gearing up for some interviews, thanks for your continued prayers and support!

C

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4…

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My how times have changed in 4 years! 4 years ago we brought 2 very sick babies into this world! At a whopping 2lbs each and 13-14 inches long! Brookie was a feisty little thing spending very little time on a vent and Cpap she was on a nasal cannula for around 3 weeks but made amazing progress daily. Today she is a big 30lbs she has finally caught up to her cousin Brody (who is 6 months younger) in height. She is doing amazing, she talks our ears off and asks millions of questions a day! She is exactly like Leksi was, she can play by herself and carry on one heck of a conversation with her baby! She is smart, beautiful and oh does she have an imagination. I would have never thought 4 years ago that this would have been possible but here we are! Bo, came in to this world sick, not breathing and purple. He was on the vent and c pap for over a month and on a nasal cannula for close to 7 weeks, he also has made huge progress but he has a long ways to go. He is finally a whopping 23lbs and one of our biggest challenges is still his weight! Just like when he was in the NICU. He clearly is a little behind, simply since he has been so sick this year! 4 years ago when we started this journey it was a life change for all of us! Seeing Leksi and Johnny as big sister and brother is by far the best part. They have been amazing though all of this not just for Bo but for Brookie too. I have to admit it melts my heart seeing them all Interact, it has taught Leksi and Johnny so much! It seems like 4 years ago is a life time ago, yet it feels like yesterday, how is that possible how does time go by so fast!? My mom always told me wait until you have kids time goes by so fast! She was so right!

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Once again, with the power of social media, we are Macan It Happen!

Posted in:bo | children's mercy hospital | ku med | NIH

Last week Fox4 News aired a story about how Bo’s healthcare was affected by the government shutdown. Bo is in need of a blood test that will help doctors decide whether to start him on a drug called Rituxan. This drug could make Bo well enough to receive a bone marrow transplant which could give him a new, healthy immune system. This blood test is so specialized that it can only be done at NIH. NIH is a federally funded hospital and its lab is closed because of the shutdown.

 

KCTV5 and KMBC9 also covered the story but Fox4 Health Reporter Meryl Lin McKean really did her homework. She knew Bo’s story inside and out when she came to interview us. After the inverview she contacted Senator Jerry Moran who made some life-changing phone calls for our son.

On Friday, we received word that Bo would be allowed to have the blood test he needs.

This is a facebook post John made after we received word that Bo’s blood test would happen and I couldn’t have said it better myself.

Once again, we are truly overwhelmed with the love and support that we have received. The amount of people that shared our news story on their Facebook page in order to help get our message out was overwhelming. The amount of positive comments posted really blew us away. We are not the only family that this shutdown has affected and it was why we felt that it was important to speak out. When used properly, social media can be a powerful tool to get your message out.

It was a strange turn of events that took place on my birthday when we were in the hospital again last week. We received some information from Boston that we had been waiting on since our trip. Bo had to have two procedures done and while the procedures were going on, we received this new information from Boston. The information was a relief, but frightening at the same time. We immediately discussed a plan of action for what to do next with Bo’s team of doctors. One major part of the plan was to draw blood and then send it to NIH first thing Monday morning. It never crossed my mind that there was a potential shutdown that could happen. When we were told that we can’t send Bo’s blood and we had to wait until things get resolved before we can move forward with the plan that we just came up with… We were dumbfounded. Right when we thought we had a breakthrough, we got punched in the face!

I don’t have all the answers to life and nor do I try to understand it all. You have to pick and choose your battles in life, but when it comes to your child’s health… you will fight them all! You have to question everything and if you are not happy with the answers… you have to continue to ask others until you are. I used to get really frustrated with the amount of doctor appointments and specialists that we would go see for Bo. Nobody had any answers that made since. All that the appointments did was make me question our parenting abilities. I was starting to think that we were making things up and then the only thing that came to mind was… Munchausen syndrome… I felt like we always had one specialist saying one thing and another saying something different… and this can make a person think that they are crazy.

Our trip to Cincinnati last year was almost a breaking point for us, but it was Carolyn that never missed a beat and she continued to fight. When we were told that we needed to go to Boston this year, I thought it was a bad idea after everything that took place last year in Cincinnati. Why would we have to go all the way to Boston with a sick kid just to be told the same thing that we had already been told so many times??? Well, last week we were given some information that justified our trip to Boston. For once, we feel that we have a direction that we need to head towards in order to get Bo healthy. We still have a long road ahead of us and more battles to fight… but, we now feel that we have better information and we know what we are fighting. We no longer feel like we are in a Kung Fu movie fighting with our eyes closed. It is Carolyn’s motherly passion that is our family’s strongest weapon.

It amuses me that I find comfort in a quote that came from a fictitious movie character that I read daily…

The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That’s how winning is done! Now, if you know what you’re worth, then go out and get what you’re worth. But you gotta be willing to take the hits, and not pointing fingers saying you ain’t where you wanna be because of him, or her, or anybody. Cowards do that.

This message is spot on … Nothing in life is given to you and you have to go out and fight for things you believe in. You have to also continue to move forward no matter what hits you in the face. As a kid, life is suppose to be all sunshine and rainbows and we are trying our best to give Bo a chance to have a normal childhood.

At the end of the day, we would trade in all of the attention and things that we have received for a healthy child. We thank you once again for supporting us in our fight for Bo!

John

Today we headed to Children’s Mercy to have blood drawn and sent to NIH and Fox4 was there to continue telling our story.  

 

Thank you to KCTV5, KMBC9, Fox4 News, Meryl Lin McKean, Senator Jerry Moran and all of the doctors and nurses at KU Med and Children’s Mercy who work so hard to give our son what he needs. Our family is blessed by all that you’ve done.

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A Long Overdue Update (Sorry!)

Posted in:bo

Oh my word! Where do I begin? It has been a crazy summer and now school is back in session. How can that be…where did our summer go? Well, I can tell you 48 days of it was spent in the hospital.. UGH… Let’s do a recap.

Bo spent all of June, a few weeks of July and 10 days of August in the hospital. On August 7 we traveled to Boston to see a specialist there. He was amazing, sat with us for over 2 hours. We all had a ton of questions. Some are not yet answered until we get some results. So we know. Bo has a microbacterial infection in his liver, lungs, and his bone marrow. His port has been accessed since May 28 so he can get an antibiotic every 8 hours of his life. STILL, even at home, he is receiving that plus 4 other antibiotics and on August 10 we added another – Cipro. And that is when he had his first seizure.

Here is the thing, I can handle vomit, poop, blood, needles, open wounds, accessing ports, PICC lines, Art lines, central lines, finger sticks, bloody noses, bloody knees, watching them drain his skinny knees… BUT I CAN’T handle watching my son have a seizure!! It is so scary. It never gets easier either. This is new for us and all of them have been when he was spiking a fever. His CT, MRI, EEG and spinal tap were all normal. Thank God!

So now he is back to his original 4 antibiotics with a goal of getting rid of the Port antibiotic as soon as we get the okay from his doctor.

He has also started getting IVIG. IVIG (intravenous immunoglobulin) is a medicine used to boost the body’s immune system and make it better able to fight disease. It is made from donated blood fluids. He was supposed to get it every 4 weeks but it recently changed changed to every 3 weeks.

His levels have been so bad that we have decided to hold him from all of his therapies and preschool until his little body can catch a break. It breaks my heart to have to do that but I need to do what ever it takes to keep him healthy. One sad thing is that we have to postpone our DREAM Factory trip. I hate this for us, for my kids…but I can’t risk getting to Florida and Bo’s body not being able to handle it. We will be going, just not until February or April.

Now, let’s talk about Shakin’ For Macan… I have no words, other then AMAZING!!! Truly, truly amazing, Heather, Lisa and Kellie did the most amazing job ever. It was beyond my expectations. It was simply amazing. I have so many people to thank that it would be to hard to name all of them and I would feel terrible if I forgot someone. That night was one of the best nights of our lives. It was truly unbeliveable to see so many of our family and friends and people I didn’t even know come out to help us celebrate Bo.

I have said this before – I worried about no one coming and obviously that didn’t happen. Not even close actually. The event sold out and we had to tell people they couldn’t come! (SORRY ABOUT THAT.) I can’t thank you guys enough for all of the donations, the AMAZING FOOD (thank you Jon Russells) for that! It is so overwhelming to think it was all for us, for our family. People do still amaze me with their kindness. This world is filled with amazing people. Not sure if you guys follow us on facebook, but Bo does have a facebook page. A few weeks ago my husband wrote on it and I wanted to put that on here so everyone could see it. Many times he stands back and dosen’t say much, so when he did say something it was so beautiful and I know it came from the bottom of his heart. He, too, is so thankful for all that people have done for us.

 

Below is the post that was written by John, or as Bo often calls him, Babe.

I have so much to say, but I don’t know how to say it… I have some many people to thank, but I don’t know how to thank them…

Each and every person that has that has reached out to help us in one way or another have their own lives, families, problems and
life obstacles to overcome… but yet they still take the time from their family and lives to help us out… We know that the world does
not revolve around our family and we feel guilty for people having to always do things for us or help us out. How can we possibly thank everyone? Where do I even start?

The amount of people that has been dropping things off at our house… the kids that have been doing their own fund raising… The people who are organizing this big fundraiser… the people that are helping out at the fundraiser… the people that are coming to the fundraiser… the people that are helping… the people that bring us food when Bo is in the hospital… The people that just post a simple supporting comment… We are truly overwhelmed.

Last year I was blown away with the support that we received when we found out we had to go to Cincinnati. This year, we found out that we needed to go to Boston and I received texts and e-mails from people before I even knew we were flying that they want to help pay for our tickets. I received an e-mail from a friend
with confirmation that our hotel was booked even before we had plane tickets… Someone close to us sent us a check that made our jaws drop… I can go on and on and on… I can’t possibly thank everyone the way they need to be thanked…

As a family, we fight each and every day for Bo and when I say family, I mean everyone that is in our life. With all the love and support that we have, it helps our fight. With all the help and support, it lessens our load so that we can try to focus on what is important.

If it was not for my Dad being retired or my Mom being around we could not make it. If it was not for Carolyn’s parents, sisters and yes…even her brother… We would not make it. I am very thankful that I have a really strong wife, but she is even a stronger mother to our kids. It kills her to have to spend so much time away from our other three kids or not be able to give them the attention that is needed. Carolyn gets her strength from her family. Who ever said that in-laws are a pain in the butt…well, they married into the wrong family! In all seriousness, each and every sister is there when we need help with getting our kids to school, giving them rides to activities or watching them when needed.

In my day to day life, I like to tell myself that nobody cares if you are sick or hurt, so suck it up, make no excuses and keep moving forward…well, over the past 4 years, I found out that people do care and they are there to pick you up when you do get knocked down!

As a family, we are scared of the unknown with Bo. With the day to day support that we have, it helps our fight. When I think I am having a bad day or feeling sorry for myself, I only need to think about the hell that Bo has gone through and is still going through. As a family, we could not make it without the amount of support that we have.

If you are reading this, I hope you understand how much your love and support means to us. We will never be able to repay you, but we will try and we always make sure that we give our support to others in life that aren’t as lucky as we are.

We thank you!

John

——–

I couldn’t have said it better myself!! Thank you SO much.

C

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Back at KU, Hoping for a Short Stay

Posted in:bo | ku med

Bo had a tough weekend…He has a fever every night and his legs were bothering him. He ended up with a 102 fever yesterday but they already had an appointment with home health this morning so they waited it out. The nurse thought his infection had moved into both of his knees so needless to say they have been admitted. He has a procedure at 2 to get some of the fluid off his knees to see if its bacteria.

We are hoping this will be for just a day or 2 but we won’t know anything until we get the results.

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I Won’t Let Go

Posted in:bo | friends

It’s been a shitty week.

About a year and a half a go we met a little boy, Eli who was the same age as Bo and has a complex medical history like Bo. He has mitochondrial disease and spent as much time as we did (do) in the hospital. I got to know his mommy, Heather, and we could chat about Medical Stuff. It’s nice to have someone I can talk to about everything, without explaining all the details as I go, and who understands what it’s like to parent a child with a serious illness. Eli and Bo have all the same doctors. Almost every single one of them refer to Eli and Bo as “the two boys who keep their brains busy” as they navigate the next steps in their medical care.

Eli passed away on Sunday at KU Med. He was three years old.

76-Tomkins Nov 12

Elias Richard “Eli” Tomkins December 1, 2009- April 28, 2013

I can’t tell you how much Eli’s death has messed with my heart and mind. How and why did this happen? It’s not supposed to be like this!

I think part of me is so freaked out because we’re in an eerily similar situation as Eli: we don’t know why Bo has what he has or exactly how to treat it. Obviously, we treat individual issues as they come but there’s no actual treatment for IPEX. There’s no actual cure.

I can’t imagine losing a child- not Bo, not Brooklynn, not Johnny, not Leksi. My brain can’t process those scenarios. I’m trying not to let scary thoughts get the best of me but it’s hard not to wonder what’s next for us? Where do we go from here? How much longer can Bo’s little body handle all it has to endure?

Eli was a  WARRIOR. He was a fighter and he battled things no child should ever have to fight. It makes me so angry. No parent should have to plan their child’s funeral! I was meant to be Bo Mommy and I will always be grateful that I get to be Bo’s mommy…but it’s damn scary.

There’s a song by Rascal Flatts I Won’t Let Go that I always go back to. Read these words. This is how I feel about being a parent to a sick kid!

“I Won’t Let Go”

It’s like a storm
That cuts a path
It breaks your will
It feels like thatYou think you’re lost
But you’re not lost on your own
you’re not aloneI will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let goIt hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rainsI will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tightAnd I won’t let you fall
Don’t be afraid to fall
I’m right here to catch you
I won’t let you down
It won’t get you down
you’re gonna make it
Yeah I know you can make itCause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go
Oh I’m gonna hold you
And I won’t let go
Won’t let you go
No I won’t

It’s sad.

It sucks.

I hate it.

I am sad and mad and angry.

I don’t want Eli’s family to suffer this loss. It is so very frustrating and heartbreaking!!!

I couldn’t sleep last night and I wasn’t sure how to even blog about this. But I want everyone to know that Eli was such a trooper and so was his family. Having a child with a serious illness effects everyone. Just like our family, I feel terrible when Bo is sick- not just for Bo but for my other kids too! It scares them when we have to go to the hospital but our kids are expected to act like everything is normal. It can’t be easy for them. It’s not easy for them. Thank God we have a great family, friends and community. It so important to have these people in our life. The unconditional support helps more than people realize!

Please pray for Eli and his family. They will say goodbye their final goodbye at Eli’s funeral tomorrow.

Hug your loved ones today. you just never know!

C

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May 3, 2013 - 3:22 pm

David Dodd - Your blog was spot on. The pain is real and doesn’t seem to go away. The book “Heaven is for Real” helps.

May 3, 2013 - 3:49 pm

Pamela - Heaven is a wonderland
Where angels dance and play
And laughter and happiness
Are the music of the day

Joy fills the clouds
Upon which angels roam
Everyone loves everyone
No one ever feels alone

Heaven is mystical, magical
And beautiful too
Where angels old and new
Are watching over me and you

Carolyn- I don’t know who wrote this. My heart breaks for you your loved ones. Love to you, Pam

May 3, 2013 - 5:45 pm

Tammy Rettig - My prayers are with you and Eli’s family. So sad to read this and not feel the pain.

May 3, 2013 - 6:25 pm

Kaye Frisbie - We may never know the answers to our “why” questions in this lifetime, but hold onto the faith that there is no pain in Heaven and the belief we will all reunite with our loved ones who have passed on before us! Prayers for Eli and his family and prayers for you and yours!

May 3, 2013 - 8:37 pm

Debbie Wolfe - I will pray for you all.It doesn’t matter how old a child is when you loose one it is so unreal. My brother died at 19 and my father never got over it.Keep the faith and know you have friends and family that pray for you and love you. You are not alone in your journey God is always with you . Keep the faith and I will continue to pray for Bo & all of you.

Good grief!

Posted in:bo | ku med

For the past 7 weeks Bo has, for the most part stayed, healthy! Two weeks ago that all changed. He and Brooklynn both had a cough which I thought was surely from the crap-ass weather. Cold hot, cold then hot, just pick a season- seriously! We saw the doctor two times in a week, I accessed him [his port] at home and started him on some antibiotics for a sinus infection and an ear infection. All is well? Nope, five days later *BOOM* it hit him hard. He had 104 temperature, 90% o2 stats, and a heart rate of 200, and landed us in the hospital!

We ran a ton of tests and he ended up having pneumonia. It took three antibiotics to help. He also had something new! His hemoglobin, platelets, white count and a few more were all low. Really low! His hemoglobin was 7, platelets 99 and white count was 2. Yep, when he goes, he goes big! He had an iron infusion and spiked a fever, not sure if this was bad timing for the fever or due to the infusion. He will continue to get these weekly until we figure out why his body is working in the opposite direction?!? Is this the IPEX? We don’t know! We have a lot of appointments coming up to figure this out. If all the tests come back okay, they will have to check his bone marrow to see if (or why) he isn’t producing white cells. That won’t be fun! At the end of this high dose of antibiotics he will have a bronchoscopy to see what’s going on in his lungs. Hopefully we will have some answers soon!

We have started a Super Bo Facebook Page. It’s easier to update on it when Bo is in the hospital. Find us and like it!

I have to say a few other things too. We are so blessed and lucky to have the people we have in our lives! I have no idea where we would be with out my parents, my in-laws,my sisters and my two sisters- in-law! They keep my family together. We work as a team! While we were in the hospital last week, John was out-of-town working. My three other children were taken care of by parents and in-laws!! They will never know how much I- we- appreciate them! Thank you!

To my amazing friends, thank you for the visits, the talks, my lunch shakes, everything!! I am so lucky to have amazing friends! Our community is unbelievable. Our teachers at our school keep my 2 older children safe and sound and make sure they are doing okay! They ask my kids and my niece how Bo is doing. It’s amazing all the way around! It makes my life so much easier. You guys will never know how very grateful we are!

C

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April 14, 2013 - 10:07 pm

Kelli carr - Thinking of you guys and sending prayers!

April 14, 2013 - 10:31 pm

Traci Pastine - So sorry to hear about this! My heart breaks to know that this little guy is having to endure all this pain. I will be praying for him and you all. Bless your hearts to have to go through this. I could not even imagine. So you are all in our prayers. Take care and give that little guy a hug from me.

April 15, 2013 - 6:03 am

kristen - Hope No gets better fast and you have another long run of health. Your such an amazing and strong mom.

April 15, 2013 - 7:24 pm

Jackie Sharp - What an amazing little guy!! May you continue to draw your strength from our heavenly Father. My prayers are with Bo as well as your family!

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