Random Pictures

This is what I wake up to every morning...



Ha Ha...I just noticed his tshirt is on backwards. He is so hilarious and by the way this hair is very tame compared to the crazy hair he usually wakes up with. His routine of late has consisted of getting up when Cooper and Jacob get up for school and going straight into mine and Chad's room and crawling back in our bed and asking me to turn cartoons on for him. I cannot tell y'all how jealous I am of him when I see him all snuggled in our bed while I am usually running crazy trying to get myself and his sister ready for the day.

This is the sweetest picture of my sister and SK taken over Spring Break.



Also taken over Spring Break...we dressed all the girl cousins up in matching sundresses and attempted the impossible...a group picture. Hey, nobody had to know that it was probably in the 50's outside, you have to take advantage of your opportunities when you have them, right?



We are fixing to start end of season baseball tournaments...it's kept us busy for about a month and a half now, but it's a fun busy. We'll have a couple of more weeks of cheering for our Astros, Rangers and Pirates.

Our girl is still not 100%, in fact I had to take her back to the doctor just this week for fever and vomiting. She is such a mystery to us all, no one knows exactly what is causing all this. She bounces back well though and is still our happy smiley girl 99% of the time.

This is how we find SK's stuffed animals from time to time. It's not me or Chad that does it either...it's those sweet brothers. They know where SK likes to sit and that she likes to hold one of her babies while she sits there too.





Oops...how did that get in there? Well, I did say it was random pictures. Guess I'm having a hard time re-entering reality and letting this one go.

Thanks for checking in on us. Have a great weekend!

Summer Styles

Oh we are sooo ready for summer around here, I know you all are too. It's been a long cold weird winter here. Anyway with warmer temps come new clothes for SK...well new to her b/c her mama loves a good consignment store/sale.

This summer will be the summer of the headband. They are so cute and the possibilities are endless. I ordered her some different styles and colors off Etsy and didn't feel bad about it b/c the prices were so good.

Here's just one example of the new look SK will be rockin' for summer...



This one is so funny to me b/c it looks like SK is sporting a baby "bump it," sooo funny...



The big bow...it cracks me up...we may have to grow into this one sister.



We will also be mixing it up with the side braid from time to time so be on the lookout for that too.



Don't worry, all your classic favorites will be in the mix as well including but not limited to the whale spout, pig tails, and the plain but pretty natural look.

Oh I can't wait...we are dreaming of the days of sundresses and headbands, shorts and tshirts and bathing suits and bare feet.

Bon Jovi Concert and Minivans

Alright I know you are all dying to know how the concert went...or is it just me wanting to relive how great it was...it's probably just me. It was fantastic.

The boys totally delivered.



They sang everything that all of us die hard Bon Jovi fans truly want to hear. Jon knows his audience there is no doubt about that.



He took us all the way back to 1984 with "Runaway," then back to the present with a little bit of his new stuff and didn't leave out a thing in between. "You Give Love a Bad Name" was the second song he did and let me tell you that place about exploded.


(Note: you may have to actually click on the pictures to see them in all their blown up glory...or again maybe that's just me)

I loved that it was not beneath him to sing all of his big hits b/c you know the song "Bad Medicine" certainly was not the pinnacle of his writing career but he sang it nonetheless and we all got down and wallowed in the memory of it with him...it was great!



It was so fun and as you can see from the picture above he gave it everything he had. He's still got "it" even after all these years. I must say, the years have certainly been kind to him.

They ended their encore with "Wanted Dead or Alive" and "Livin' on a Prayer," Awesome!

The Bon Jovi audience has definitely changed over the years. I saw some people dressed with a little bit too much throw back to the 80's. I wanted to say to them, "Jon is not still clinging to the 80's look, if he has moved on then maybe you should too," but I will say it did make for some good "people watching."

I am trying to remember some things surrounding my first Bon Jovi concert...I was probably 13 or 14. The things that consumed my mind then were things like acid washed jeans and miniskirts, laying out and how incredibly big I could make my hair. Well many years later I found myself driving to my second Bon Jovi concert in a minivan...how 'bout that! Thanks to all my sweet Facebook friends for the supportive/encouraging comments like "Face it, cool has left the building" and " Are you are still going to think you're cool when Bon Jovi is playing at your nursing home?" Those were just two of my favorites. The best came from Chad on our way to Nashville Wednesday morning. "Hey, did I tell you what my doctor said about my cholesterol? It was pretty interesting." We really have come a long way baby, you just cannot make this stuff up. Wasn't it bad enough that we were going to Bon Jovi in our minivan? Did we really need to delve into our medical conditions/aliments as well...we both busted out laughing.



A huge "thank you" to our moms for making this trip possible. I appreciate their willingness to take our girl on. I know there was some apprehension and nerves but they never let that get the best of them. They did a fantastic job. Thank you both.

We had the best time, we laughed our heads of at ourselves and at others. We were just a couple again. For 32 hours no one called us "daddy" or "mama," we were just Chad and Amye. It was weird and fun and so unlike us in "real life." Thanks baby...it was the concert of a lifetime for me, I had a ball.

First Crush vs First Love

My husband surprised me on Valentine's Day with tickets to see Bon Jovi in concert. Well, the concert is this week and I am going to be spending the night away from all of my children, yes you heard me right...all of them. My mom and Chad's mom are giving us the best gift...the gift of some time to ourselves. I am so excited. Of course it goes without saying that Chad is henceforth absolved of all future gift holidays for many years to come. He managed to completely surprise me, I absolutely could not believe it.

You see Jon Bon Jovi and I have had quite a relationship. A relationship that has spanned upwards of 20 years...ouch, I hate admitting that. I have only see him in concert once and it was in 1986 just after "You Give Love a Bad Name" had come out. Bon Jovi was the opening act for 38 Special and my friend and I of course just went to see Bon Jovi. In fact, we left when 38 Special took the stage. I remember my friend Mike was appalled my this, he could not believe that we had left. I'm sure it was best that we never spoke of it again if we were to remain friends.

Well now, after 24 years we are finally going to be reunited, I'm sure I have thought about him more over the years than he has thought about me...or am I getting the real Jon confused with the "life size" poster Jon that I had in my room...sorry I digress. I think it was his constant touring, he was never around and time and distance just came between us, although I never gave up on him completely. In any case, I will be introducing my first crush to my first love and as much as I thought I loved Jon Bon Jovi, it doesn't hold a candle to the life long love and devotion I share with my man. He can try and woo me with his songs but he will never do for my heart what the guy who will be standing next to me does for my heart everyday.

Home always makes it better

Alright, we did end up back in the hospital with Sophie Kate. So just to recap we were inpatient for 2 days, home for 2 days and then inpatient for 3 days. Don't ask me what days those were exactly b/c I can't tell you. My days are so messed up that I have to look at my cell phone just to know what day it is, but we are home now and I hope home for a long time.

SK is doing better, we have had to slow her feeds down a lot but so far so good. She has been keeping things moving south instead of north for a couple of days now. She still has a bad cough which sounds like she is trying to hack up a lung but no fever anymore. I think her stomach just can't handle all the "gunk" draining into it along with her food too, so feeding her slowly is helping with that.

Virus is still being thrown our way, which is fine, I'm mean she is certainly susceptible to normal kid sickness too, it just stinks that we have to go inpatient to get over it. I am not convinced that we don't have some allergy stuff thrown in there too, especially with all the pollen we have here and all the snottiness she has. So we have been trying some Benadryl and Claritin as well.

Her sweet smiles are starting to emerge here and there again. It's a beautiful thing b/c they have been gone from us for almost a week. It's agonizing seeing her hurt. I want so much to take it from her and put it on me. Helpless doesn't even begin to describe it. My ache for her and her pain is ever present with a different ache for missing my boys. Their schedule is messed up, they wake up one morning to find their dad and their sister are back in the hospital...it's just hard all the way around.

Chad and I survive on little to no sleep during these times b/c if you're the one up at the hospital they won't let you sleep and if you're the one at home then you're thoughts, worry and concern won't let you sleep. It makes me appreciate the last year so much and makes me treasure the days of being home when my boys get off the bus that much more. There is no place that I would rather be more than here with my family. The 6 of us, with our God leading us and holding us, can get through anything if we can just be together. I praise Him for the comfort that is our home.

Psalm 119:50 "My comfort in my suffering is this: Your promise preserves my life."

Shutting Down

This time around in the hospital with Sophie Kate took a lot more out of me than I had expected. I guess it was b/c we had been outpatient for so long, our last inpatient stay was Feb. 2009, isn't that amazing? I don't like to do a lot of walking around when we are inpatient b/c truthfully I don't like to see what may be outside our tiny room, it literally breaks my heart to see the faces of the other children and parents, b/c I too have so deeply felt so much of what they are feeling.

During my one and only trip to the cafeteria during this stay, I was riding the elevator with two sets of parents whose children had been in the Pediatric Intensive Care Unit (PICU) and were now in regular rooms. I heard them talking together...they were so thankful that their children were out of the PICU, you could just hear it in their voices and see it in their faces. One thing that struck me was when they were talking about actually having a pull out chair to sleep on; you see, when your child is in the PICU you can't sleep in the room with them. The parents claim spots out in the waiting room and bunk with all the other parents of PICU children in uncomfortable chairs probably pushed together into make shift beds.

I found myself quickly humbled...while I had been walking around feeling sorry for myself once again and being a baby that we were back on the 4th floor (which I hate), here these parents were not even able to sleep at the bedside of their child. I can't stand myself at times.

We haven"t been inpatient since SK started having seizures, so she got a nice big sign on her door that said "SEIZURE PRECAUTION" in huge black letters. Another reason I didn't leave the room much, I hated seeing that sign on her door. Seriously y'all it might as well have been a flashing neon sign to all those who walked by, "seizure alert, seizure alert,' in case you didn't know my little girl has seizures. She also had padding around the sides of her bed so that she wouldn't be able to hurt herself during a seizure. These people totally freak when you say seizure and I know I know rightly so. I don't mean to sound unappreciative, but give me a break, when are we going to treat people like individuals instead of one size fits all. There, I'm done.

Everyone still expects me to tell them Sophie Kate's story no less than like 4 times per hospital admission. Seriously, can all the medical people not get together and compare notes. She's just a patient to them, they don't get that I literally have have to shut down a part of myself to do that. I use big scary words like hypoxic ischemic encephalopathy and fundoplication and seizure as well as letters like CP, GERD and CVI. I find myself talking to doctors like I always have...relaying information and exchanging information about the patient we are taking care of. So I shut down another part of myself, b/c unlike for them, this is the most important patient of my life and I can't talk about my girl and keep it all together 24 hours a day, so I go into what I call "complete medical mode" in order to survive it.

Back at home, it is just me and my girl again, but here we are surrounded by our boys and that is exactly where we like to be. She rests and breathes easily asleep on my chest, it's a comfort for her and for me. I wish I could provide this kind of comfort for her all the time and spare her all the pain she has already endured and will continue to endure.

Sophie Kate did really well both Friday and Saturday, Sunday has been a different story. She is not feeling well, the fever has returned and she has vomited a couple of times, not good. They did find a small problem with the surgery she had over a year ago (the second fundoplication). There is a small hernia and we will certainly be talking to her surgeon about that soon. She woke up extremely snotty as well, so it's hard to tell if she is getting sick (coughing, vomiting) from all the "snottiness" or if it's b/c her reflux is back, which could happen with this small hernia thing that could grow into a bigger hernia thing.

Depending on how she does, we will be talking to/seeing some of her doctors this week. Please keep SK in your prayers and please pray that we will get clear direction on this, so that we will know which way to go in treating her and getting her back to feeling better.

Thanks for checking in on us.

Safe at Home

Sophie Kate and I came home Thursday night. No more fever, she's tolerating her food well and to me most importantly her surgery from over a year ago is still intact even through all the vomiting and retching, Hallelujah! She's not 100% but as I tried to convince them yesterday in my hard push to come home, nobody else has to be completely recovered and back to their old self to be discharged from the hospital, but it's like that's what they want for SK. Don't get me wrong, I appreciate their diligence but I know this girl and yes we do have to be inpatient from time to time and yes the docs do help her get better, but she has always done so much better once we get her home and get her back in her own environment.

There is only a certain level of healing that takes place in the hospital. I have seen it over and over again w/SK, there is a difference in her once we get home. This is our safe haven. She doesn't get fully well until we get inside these four walls and truth be told neither do I. There is nothing magical that happens here but as I said before it is our family's safe haven. We are safe to express our emotions here. We are safe to be angry, safe to let out frustration (although not on each other), safe to question (in a respectful way) and safe to bawl our eyes out and there is a level of healing in that.

I found myself very frustrated (to put it nicely) at the hospital waiting to be discharged b/c it was not done in any semblance of a timely manner. God was teaching me a hard lesson in patience, b/c once I get the ok to be discharged I am ready to walk out the door and believe me it never happens that way especially with my girl, she's constantly throwing kinks into that. I found myself driving way too fast down the interstate once we hit the open road in my quest to get inside these four walls. We have been through a lot here and we can handle a lot here, we just have to get here. Once again it has nothing to do with the actual location but it is the people here and the love here and God being at the center of it all that make this place such a comfort to my soul.

Sophie Kate will still be in recovery mode over the next few days her feeds are not yet up to what they need to be, but we are here and we are safe to feel again.

I cannot thank you all enough for the love and prayers for our girl.

Inpatient

I would have never dreamed by the way our Wednesday morning started off that we would have ended up with another admission to Children's Hospital by the end of that day, but here we sit...inpatient again. At this point nobody really knows what Sophie Kate has, we know what she doesn't have. She doesn't have pneumonia, the flu or viral meningitis. Her blood work looks good and her electrolytes are in balance, yet she continues to spike a fever and vomit/retch. The later of which is a really really bad thing since she has a fundoplication through which she is not supposed to be able to vomit, but I can't let myself go there just yet. She has an IV and she is getting meds, but she is completely off her gtube feeds for the time being.

Our early morning started off normal but by about 10:00 I noticed SK getting sleepy. She slept through part of her first therapy, she slept through almost all of her second therapy, which was the Vitalstim therapy that we have recently started, by this point my warning signals were going off. She then slept on and off the whole way home and then once we got home she proceeded to lay on the couch and sleep some more...all of this was very unusual coming from a girl that takes one 20 minute nap a day.

I was on high alert by this time...this was not my SK, she was lethargic and in and out of fitful sleep. About 20 minutes after her second feeding of the day she started vomiting and the decision was made to take her downtown. Misery then ensued, we spent 8 hours in the ER...she had a fever of 102.6 and continued to vomit/retch. All kinds of tests were run and everything came back negative, clear and good while SK continued to look absolutely miserable.

So I was in the middle of my hard sell in convincing the ER docs to let us go home and I asked, "Can't we just have "normal kid" virus, can't it just be that?" The answer to my question was yes, she can just have a "normal kid" virus. So I said great, people handle that at home all the time and SK has always done better at home. So they agreed that if she could hold down some Pedialyte through her gtube they would let us go home. We didn't even get that far, she put on quite a show right there in front of the docs (and I will spare you all the gory details) so I was vetoed and the decision was made for us that we were staying.

It has just been reiterated to me over and over the past 24 hours how quickly things can change with her. Yes of course SK can get "normal kid" stuff like viruses, the thing is though we have to go inpatient to get over them. So now when I ask the question "OK, do we think this is just a virus?" I am getting the response "We sure hope so." That's great, thanks for the firm and confident response. It doesn't make me crazy scared at all, oh no, now I feel all warm and fuzzy inside.

So here I sit with my girl once again in a place that is way too familiar to us. It's been so hard to come back, we had been gone so long. The plan is to continue IV fluids and let her tummy rest for a while, then start back on some slow feeds with Pedialyte some time Thursday morning. Her fever continues to come back when the Motrin wears off but at least at this point she won't be getting dehydrated.

That's our story for now and I will be continuing my big push to get us out of here to whoever will listen (I know that shocks those of you who know me). I thought I was convincing people in the ER up until the admitting doc came in and then I knew that I had been over ruled and defeated. Seriously I was telling Chad at 9:30 at night that we were not staying we were coming home (again, shocker I know), maybe I was the only one that was thinking we were coming home all along.

Thanks for checking in on us, please pray for our girl. I'll update when I can.

Easter Weekend

We could not have asked for a more beautiful Easter weekend here in "the Ham." My heart is so full. I spent the better part of my Sunday afternoon listening to the sounds of my children playing. Their laughter, their squeals from too much fun that just cannot be contained and their faces wide with their sweet smiles...it's a beautiful thing.

We have had our share of Easter egg hunts this weekend. I am so glad that they all still love doing that and by they I really just mean Cooper. He's not above it and he gets into it just like the rest of them and then sometimes he even helps us hide the eggs for the other two boys. Nevertheless, we were hiding and hunting and hiding and hunting.







I'll just tell you that of all the cute girl clothes, there is nothing like a little girl in a smocked dress with bare feet...nothing like it, I could just eat her and her sweet little baby feet up.





Sophie Kate with her Easter basket, she got some bathing suits and a bubble blower. Can you tell that we are really ready for summer?





The brothers...



After church on Sunday, we had lunch with Chad's parents and did some Easter egg hunting. This picture was taken at their house, I absolutely love it.



We are loving these longer days. My favorite part is late afternoon when it's starting to cool down again but the sun has not yet set. On beautiful days like we had this weekend, I get to sit outside on the swing with my girl and we watch our boys play. It is one of my very favorite things...holding that little girl in her smocked cotton dress and kissing those sweet little feet, while we watch our boys be boys.

John 20:29 "Then Jesus told him, "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed."

Blessed

Sophie Kate started Vital Stim therapy this week. This is the therapy that we had been trying to get SK into since last fall. We will go 3 days a week for 6 weeks...yes, you heard me right...3 days a week downtown at Children's for 6 weeks. It is a concentrated intensive type of therapy, each session lasts for one hour. They are providing electrical stimulation to the muscles involved with chewing and swallowing, kinda of like an electrical stim machine that is used to rehab injured knees. The muscles of the cheeks and throat are contracted in an effort to strengthen everything around there so that we can improve her swallow.

We have only been two times so far but she did really well this past Wednesday. She swallowed around 10-15 times which is a lot of work for her. The therapy is done by a speech therapist who also works to stimulate SK's cheeks, mouth, lips and tongue in order to get her ready for eating again. If you are interested in reading more about Vitalstim therapy visit www.vitalstim.com.

This journey with our girl has been an up and down roller coaster of feelings and emotions and once again I find myself allowing the hope to come back in and it is a scary thing. I had made myself ok with SK being 100% tube fed, I have convinced myself that this is just the way it is going to be. Then I saw her swallowing so well the other day and actually closing her lips around the spoon to get the ice chips into her mouth and my tears fell once again.

She is growing, she is healthy, she is not just living she is thriving and if it were not for the gtube, well then, we would not even have our girl with us. Still, the hope is growing in my heart and head again...is it possible? Will she be able to eat orally again? Will she really be on the gtube for the rest of her life? All these questions, all this uncertainty...it's scary...it can be painful to hope again. We are in such a good place with SK right now. I don't want to do anything to upset the good thing we have going, but how can I not do everything possible for her?

I want to give her every opportunity, so we will go down another new path. I don't know where it will lead us, I don't know what the outcome will be, but we will be blessed and we are blessed no matter what the outcome is. The perspective that I have tried to keep from the beginning (and believe me it hasn't come easy) is that my faith and my hope is not in therapies, doctors, medicines or tests. My faith and my hope is in the One True God, Jehovah! Therefore, no matter what comes our way, we will cling to our hope in Jesus Christ and that kind of hope cannot be taken away from us by difficult diagnoses or negative test results. Hallelujah!

As Good Friday approaches we are keenly aware (as we should always be) that the battle has already been fought and won. The price for our sin has been paid, through the death of Jesus on the cross and by accepting Christ as our Savior we have been guaranteed life eternal with our Creator in heaven. There is nothing on earth that can take that away from us and based on that alone we have been shown that we are loved beyond words and that we are blessed beyond measure.

Isaiah 53:5 "But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed."

Hope you all have a wonderful and worshipful Resurrection weekend!