Sunday, August 30, 2009

The Most Awesomeness of Distractions

Ahhh...the sights and sounds of football are returning to the area. The boy's flag football games have started, the high school games have started which means that college and NFL games are soon to follow. The one thing that the start of September signals is the beginning of college football season, it's been a long 9 months and we are sooo ready.

These flag football games are so fun, we have a ball doing this...

Sk just likes to sit around and look cute...

Last week definitely took it's toll both physically and emotionally. We have a surgery date set for Jacob in October. The CT scan on Thursday showed the doctor exactly what he needed to know about this cyst that is in Jacob's right ear. It is very involved with the bones and structures of the ear. There are going to be two surgeries: the first one to remove the cyst and any surrounding structures and then about 6 months later a second surgery to rebuild the bones of the inner ear. Yes, I can hardly believe that all this is happening to my little boy. I have NEVER heard of anything like this before.

His hearing will not be good in between the surgeries but should be better after the second surgery. His left ear is fine and his hearing is great in that ear. His attitude is so good about everything, Jacob just doesn't have a bad day, it's not in his nature. He has the sweetest most kind heart and it breaks mine to know he will be in pain.

We are in the process of exchanging one of SK's medicines for another. It's not the seizure med, it's the meds she gets for her muscle tightness. The process is not going well and I am beginning to second guess myself on this decision. She's irritable, not comfortable and not sleeping so unless things get better over the next 3 days I may find myself going back to how things were before. I was wanting to try her off that particular medicine b/c it has been known to cause seizures. Please pray for this process, I desperately want to do the right thing for her.

Now back to the most awesomeness of It brings with it cooler temps, get togethers with friends and family, tailgating food and fantasy football match ups every Sunday. Now that the boys are into it, it just makes it that much more fun.

I know there is always something with us. I'm sick of it, I know you all must be. I want to be bored so bad. Thanks for sticking with us on this journey.

Tuesday, August 25, 2009

The Long Version

My baby girl is sleeping so sweetly right now, it's her first good nap of the day. Lots of different people have been very interested in her today and she is exhausted, as is her mama.

Lots to fill you all in on today. The short version is that Sophie Kate is having what is called partial seizures. The long version is that her neurologist is actually relieved that that is the only type of seizure she is having. Lots of SK's doctors have told me different versions of "well it's not as bad as I thought it was going to be" and "she's not as bad as she sounds." Yes, I know those do not necessarily sound like stellar reviews, but I will take it, that is what happened again today.

The doctor told us that her EEG showed NO seizure activity (stick w/me b/c here's where it gets complicated). From what I understand and believe me that is very limited right now, other types of seizures show up very plainly on an EEG and it is not in a good way.

Since SK had NO seizure activity (Praise God) and based on my description of what her "episodes" look like, he said that they are partial seizures. Partial seizures are the easiest type to treat according to our neurologist. The other type of seizure that he thought she might be having is a tonic seizure and it is much more complex and difficult to control. So I guess what I am trying to say in this "long version" explanation is that if she is going to be having seizures this is the best type to have besides having none at all. Does any of this make sense to anyone, b/c it barely does to me?

SK continues to have about 1-2 seizures a week, so we now have options to medicate or not to medicate. We have been given all the information on this subject we have also been given the prescription so it is now up to us whether or not to get it filled and start giving it to SK. We have been told by her doctor that giving it or choosing not to give it are both reasonable options for us right now. So we will pray for God's wisdom and direction, do some of our own research, and then pray some more to determine the best course of action for our baby girl.

It's been quite a day full of lots of stuff I wish I didn't have to deal with, but all in all I am at peace with what has happened today. I am not freaking out, except for when I went to 3rd grade parent chat night. Evidently partial seizures I can handle but 3rd grade reading and writing expectations I cannot.

Please continue to pray for our family, we have Jacob's CT scan and a meeting with his surgeon coming up on Thursday. It's a lot to handle when I think of it all at one time but God is keeping us in the moment and is carrying us through this in only the way that He can. Thanks for checking in on us.

Thursday, August 20, 2009

Some Light Reading

I have decided to detour away from some of the depressing topics we have been covering lately. I am tired of thinking about and discussing EEG's, seizures, CT scans and surgeries. We are in for a beautiful weekend here which also brings with it the start of Cooper and Jacob's flag football games. So how 'bout only topics for light reading today?

We got some statistics on SK the other day when we took her to the neurologist. She weighs 27 pounds and is 34 inches long. As if we all didn't know already that she was growing like a weed, it has now been confirmed for us. I keep saying that I am going to go back and look at Cooper's baby book to see where she compares to him. I am really thinking she's got him beat in the height department. It would take a lot to beat him in the weight category 'cause he was a big time chunker and Miss Sassy is most definitely not that, but she sure is a long-legged princess.

Now forgive me while I delve into even further frivolity, which would be the subject of SK's wardrobe. I have received the outfit that will be the centerpiece of her fall collection and I want to share it with y'all, b/c even though this does not matter not one bit on this earth, there is a tiny part of my being that gets totally excited over her sweet little clothes. It's a guilty pleasure of mine.

I have recently discovered "Etsy." It's an online store that sells lots of things, but the only thing I am interested in are the handmade baby clothes. I'm sure some of you are laughing that it took me so long, it's probably been around a while, hasn't it? Nevertheless, I know better now so I will do better. So here it is the outfit to end all outfits...

The only thing that will make this little dress and hat cuter to me is when I see my little Sophie in it, darling!

Lastly, with all the gamers I have in my house, it is no wonder that eventually little Grey would be powerless against the vortex that is sucking him in to the world of video games. He succumbed to it's power last night. There they sat, the three of them...Cooper and Jacob playing their DS's and Grey playing our old leapster which he very affectionately calls his "big fat DS." Please do not call it his leapster he will have no idea what you are talking about it is the "big fat DS" end of story.

So there you have it, no "deep thoughts" today, it's Friday and God already has next week taken care of no matter how much I worry about it. He holds our future in His hands and in His hands is a very comfortable place to be. Have a great weekend!

Wednesday, August 19, 2009

Update on SK

We did see Sophie Kate's neurologist today. You really never know what to expect going into some of these appointments, but from what I told him he seems to think that the episodes SK has been having are seizures. However, since it has been a year since her last EEG, he does want her to have another one done. We didn't get a lot of information today b/c her doctor will be able to tell so much more from the results of the EEG. He set us up for a video EEG on Tuesday morning. Afterwards he will discuss the results with me and then our options (meds, no meds, etc). I personally want her on as little medication as possible, so we will see what kind of options we have come Tuesday. Thanks for checking in on us.

Tuesday, August 18, 2009

When I Feel All Alone

Well, tomorrow is the day. We will take our little girl to see her neurologist again as we walk in and through yet another chapter in this earthly journey with our sweet Sophie.

The message our Pastor shared on Sunday was about blooming where we are planted, living for God in the circumstances we are in. As I thought about all the people around me and felt myself going into major pity party mode, I wanted to scream (not even knowing any of their circumstances)"yeah, easy for y'all to do go ahead and bloom where you are planted with your perfect families and your perfect children."

As I have had more time to think and pray on this and have tried to pull myself out of the pity party/victim hole that I find myself in way too often, I have thought that this really is how Satan would like us to see ourselves. He likes for me to be isolated, for me to feel alone, for me to feel like I am the only one and even more so for me to feel like God doesn't care for and love me anymore, b/c then he accomplishes his ultimate goal which is to take away my witness for my Savior.

When I am consumed with how unfair I think my situation is, when I am sad b/c of all the things I feel like I am going to miss out on with Sophie Kate, when I feel sorry for myself b/c of my circumstances there really is only one common thread running through the whole thing...I, I, I, me, me, me.

Oh, I am not going to try to fool y'all into thinking that I am this healthy/positive in my thinking all the time. It is only through God's wisdom and strength that I am able to have these moments of clarity from time to time. Sadly, I do find myself thinking a lot about how I have it so bad around here and how everyone else "appears" to be "living the dream." And friends I use "appears" in a very loose sense of the word b/c I am truly only looking in from the outside another quality that I am not proud of, but when I am being honest it is the truth.

Lord, forgive me. Brothers and sisters in Christ forgive me, I know that I am not the only one suffering. Thank you for sticking with us in this journey. Your prayers spoken on our behalf do not go unheard to the Father and do not go unappreciated by our family.

Thursday, August 13, 2009

Keeping our Heads Above Water

There is so much going on in our family right now and I would give anything if it only had to do with the business of going back to school.

We continue to helplessly watch our baby girl have seizures. It's unbelievably difficult to watch her go through that, each and every one just tears at my heart. Chad and I will be taking her to see her neurologist on Wednesday. Please, please please pray for this appointment. Getting the right medicine (if that's what we decide to do) or combination of medicines can be quite a process in trying to control seizures. The brain damage SK sustained at birth definitely complicates the situation possibly making the seizures harder to control. At this point from my description to the doctors of what the seizures look like, they do not feel that she is in any danger of suffering further damage to her precious little brain.

Her Creator was certainly not surprised or caught off guard by these seizures. Pray that He will shower us and her doctors with His wisdom so that we will make the best decision possible for our girl.

As if that wasn't enough, when it rains it pours....Jacob had tubes put in his ears a week ago and in doing so they found a cyst growing in his right ear. The cyst must be surgically removed and there is certainly concern for his hearing in that ear. We are in for quite a process with this too, depending on how big the cyst is and how involved it is with the bones of the ear, there may be more than one surgery in Jacob's future. It will all start off with a CT scan at the end of this month, we don't have a surgery date set yet.

All of that while I am desperately trying to maintain some sort of normalcy for everyone. The problem is that we don't do normal very well, so I really don't know what I am trying to maintain around here. I guess we are just trying to keep our heads above water. We are overwhelmed and certainly feeling like our family is under attack, yet we are grasping and holding tight to the One who has never let us go. Thank you for keeping our family in your prayers.

Monday, August 10, 2009

My Old Friend

Why does the bad always seem to outweigh the good? Why do the lows of the bad news always seem, well, lower than the highs of the good news?

I'll get right to it...two therapists that saw Sophie Kate on Monday saw her having a seizure. I guess I have been in absolute denial since April/May of this year or I have been trying to pretend that I wasn't seeing clearly, when I should have opened my stinkin' eyes and seen clear as day, SK is having seizures.

She's had I guess 8-10 "episodes" as I would have called them since April/May. I have been trying to describe them to her therapists but no one has seen them but me and Chad and we just didn't know. Monday when we were going to pick up her splints, which I was totally excited about, she had one of these "episodes" in front of two therapists and they both told me that this was a seizure.

And instantly, there it was old friend waiting to envelope me in the deep blackness, waiting to take all my joy and happiness away once again. Waiting to drown out all the strides we've made this summer, waiting to overshadow and eclipse all that my little girl is striving for.

Of course, I let my old friend back in as if with open arms. We have spent so much time together over the past 21 months. We know each other so well. It's a silent kind of pain. I never knew that pain could be silent until Sophie Kate was born. Pain hurts doesn't it? When you are injured badly aren't you supposed to scream?? Then what does it mean when there is no sound?

My silent tears pour into some kind of bottomless vastness that never ever fills up, tears just roll but still there is no sound. It must be the silent pain that no heart should ever have to endure. The kind of pain we have no control over, pain that cannot be fixed with medicine or bandages.

The pain that a parent endures as they watch their child suffer. Her cry is so different after she comes out of a seizure. It's a scared cry, my baby girl is scared, she doesn't know what has just happened to her. All I can do is hold her, I can't make it stop. Oh, I'm sure whatever new medicine they throw at us will make them stop, but that medicine will also run the risk of making my girl's sweet smiles disappear too. How could I not have known what was happening to her??

Did we have too many good months, fill our quota of positive steps forward? So she really is going to be just like "they" said she was going to be. When I watch her sleeping she looks totally normal. She doesn't look like anything is wrong with her at all, it's heartbreaking....and here comes the tears and the everpresent silent pain.

You all think I am so strong, that I am dealing with all this and handling it all so well (or maybe you don't), but that is the "fake me." The "fake me" is who you see when I leave this house, it's who you talk to when I answer the phone.....this is where I really dwell and very few can handle it, deal with it, want to see it or want to be around it.

Not Me Monday

I am so NOT up way earlier than I should be today after a totally fun movie night with all my boys in which they did NOT stay up until after 11pm. I am still trying to convince myself that we do NOT only have 2 more days until school starts, but unfortunately myself cannot argue with the school calendar. Sadly, it is a reality that school starts this Wednesday around here.

Thank goodness we are NOT going to be in a complete state of shock when that alarm clock goes off at "I don't want to even think about it" am. Thank goodness that we have NOT been staying up too late and that we are NOT going to be having any problem with going to bed early Tuesday night, since we have been preparing for our back to school routine for some time now, yeah right!

My oldest and my youngest sons are definitely NOT going back to school with hair that is WAY too long, sorry grandparents. I did NOT splurge on a Star Wars-The Clone Wars lunch box for my 3 year old Star Wars fanatic just b/c I knew the look on his face would be priceless. Thank you G-man, you did not disappoint.

I guess I should also be relieved since Grey, SK and I are NOT going to miss our big brothers like CRAZY!! At least I will NOT be sad about the loss of our lazy mornings and carefree days, sniff sniff. Also, good thing I am NOT dreading homework too, huh? Am I convincing anyone yet, b/c I am NOT convincing myself.

Oh and lastly Cooper and I were NOT already sent to the office. That's right, you heard me, I just want to state for the record that Cooper and I were NOT sent to the office on "Meet the Teacher" day. We are bus newbies this year and Cooper's mama didn't know his bus number. Turns out that's information that the child and his teacher actually need to know, who knew?

Friday, August 7, 2009

Sophie Kate's Biggest Brother

Our girl in her stander...

I love how happy she is...

These next few pictures are extra special to me. I feel like I have to give a little background first. Of all three of the boys, Cooper has been the most standoffish (if that's a word) when it comes to Sophie Kate. I don't know if it's b/c he knows more about what's going on than her other brothers do, or if it's that he's a little scared, or just being overly cautious. I don't really know, probably a combination of all three. Nevertheless, he has the least to do with her of all 3 boys. We try to encourage him and certainly answer all of his questions when he has them, but he kind of does his thing and lets SK do her thing. Until now...

This was completely spontaneous on his part. It gave me goosebumps all over, such a sweet moment between my oldest and my youngest. Cooper was reading "Brown Bear" to his sister. I am so thankful that he has found a way to interact and connect with her. His heart is so tender and I know full well how difficult it is to take this all in. He's such a great big brother.

We continue to work with SK each day in her stander and in her gait trainer. Hopefully each day she is gaining more and more strength. She is definitely getting tired from all the activity, so that must mean something. She's back to 3 naps a day and I use that term very loosely when it comes to Sophie. It's more like hold me for 15-20 minutes while I watch a little TV with my eyes closed, then I'll be good to go. She's gotta make sure that the world continues to revolve around her over here. Mission accomplished Sophie, you got us!!

Monday, August 3, 2009

Here Comes the Sun

Here Comes the Sun...those words have more than one meaning to our family right now. I thought I would gather together some of the fun photos from our summer as it sadly draws to an end. Also though, the Son continues to shine down upon our family as we are certainly experiencing some of our best times together, at least the best time in the past 21 months. We are not taking our smiles for granted...