Sunday, September 27, 2009

The Screen Door

We are enjoying some less humid days here and it's a beautiful thing. I can't say we are officially done with the summer-like temps just yet b/c we have been known to experience a very warm Halloween every now and then, but just feeling some cooler and more importantly less humid temps is enough for me to break out my fall decorations. All shades of oranges, yellows and browns greet our guests now and I couldn't be happier that true fall weather may be headed our way soon.

Also this weekend we fixed the screen door that had long fallen off our back door. Can I tell y'all how much I love the sound of a screen door when it closes? Well even when it opens too...there's that creaking of the hinges and then the sound of...well, I guess it is wood on wood as it closes. It doesn't really close nicely it just kinda bangs shut. I don't really know what makes it sound like that but you all know what I mean, it is a very distinctive sound...the sound of a screen door closing.

I don't know if maybe it reminds me of a simpler time, you know the kind you see in movies, where people sit out on their front porches, drink sweet tea or lemonade and actually talk to their neighbors. Did that ever really happen? As you can see, screen doors bring some pretty specific things to my mind. The screen door is most certainly a simple pleasure in life. It doesn't have to be plugged in, it doesn't use batteries, it doesn't have to be programmed, it doesn't have to be checked continuously throughout the day like we feel that our email, cell phones and facebook pages do, and it doesn't shout incessantly at me like the TV does during the commercial breaks of our football games. It just is what it is...a screen door.

I love to hear the sound of the screen door closing behind children (3 boys in particular) as they run outside to play. I can hear my children laughing and playing out back through the screen door. I like that the screen door lets the cooler air come into the house but doesn't let the bugs come in too. How have we gone so long with our broken screen door? Can you tell how glad I am that my guy fixed it this weekend?

Friday, September 25, 2009

On This Day

On this day a husband and a wife became parents...On this day a family of 2 became a family of 3...On this day 4 parents became grandparents and brothers and sisters became aunts and uncles. On this day, nine years ago God blessed us with the birth of our firstborn, William Cooper McManic.

There have been many firsts that have followed since that day and we are so thrilled to have experienced all of them with you. God has grown you into quite the young man even in spite of your inadequate parents. You're a role model and you don't even know it. You are a role model to Jacob and Grey and a sweet nurturing protector to your little sister. They are so blessed to have you.

You have grown into a young man before our very eyes. Our tender hearted, sensitive, sports loving, outdoors craving, star wars watching, food devouring, daddy helping, mama loving, video game playing, school attending, flag football practicing, God following, 100% boy is nine years old today.

We are most proud of your decision in April of 2008 to ask Jesus into your heart and your desire to live for and follow Christ. We pray that through these difficult school years ahead of you that you will stand boldly on your faith in Christ that your morals and character will be an example to those around you and that you will continuously live a life that seeks God's own heart.

You are precious to us and we are over the moon crazy about you! Happy Birthday Cooper!!

Monday, September 21, 2009

A Day in the Life

A typical day for our girl begins some time between 7:30 and 8:00, she is awake before then but I get the 2 oldest off to school before I get her out of her bed. She is usually awake around 7:00 but she is so happy in the morning that there is no fussing about wanting to get up.

She gets a clean diaper and then gets her morning round of meds along with some water (all through her feeding tube) to start her day, it's the breakfast of champions. She then gets dressed and gets her hair fixed, those are important steps I didn't want to leave them out.

At 9:00 we drop the G-man off at school and from then on out our schedule varies from day to day. Wednesday is our all day therapy day, we start out at 9:30 with Wet Tots at Lakeshore Foundation and then we go see SK's outpatient occupational therapist at 11:45. We don't usually get home from that day until around 2:30 where we head straight over to a friends house and pick up Grey. Every other Friday we see SK's outpatient physical therapist. Then one other day a week we have a physical therapist, an occupational therapist and a speech therapist that come to our house for therapy on a rotating basis. We also average about two doctor visits a month and we spread those out among the 6 doctors that Sophie Kate sees. We also see therapists and go to different clinics on a less regular schedule through CRS (children's rehabilitation services) as well as participate in Kindermusik on a 6 week rotating schedule. So on any given week, SK and I have anywhere from 2 to 0 days where we get to stay home.

When we do get a day home SK still does not get a day off. She spends time in her stander, spends time on her tummy rolling onto her back, yes it is still one of her favorite tricks. We also work on sitting unassisted (we're still not there yet), playing with light up and musical toys that Sophie can activate herself and usually squeeze in about two 15-30 minute naps.

I try to schedule all of SK's appointments for when the boys are in school, so we usually go and pick up Grey at 1:00 and then go and meet the bus when Cooper and Jacob come home. Sk then likes to throw an absolute fit around 6:00 and usually proceeds to do that for an hour to an hour and a half after which she turns back into her normal, happy, smiley self.

Sophie Kate gets fed all of her food and meds through her feeding tube. Her first feeding is at 9:00am plus meds then she is fed at 12:00, 3:00 plus meds, and 6:00 plus meds and then in between some of those feedings she has to have her water and vitamins. Around 8:30 or 9:00 SK is put in her bed for the night, her food is started and her last med of the day is given. SK is continuously fed a small amount of her food from 9:00pm until 7:00am. During the day SK's stomach cannot handle all of the calories that she requires so feeding a small amount continuously through the night helps us get her much needed calories and fluids in.

I keep a running log all day, everyday, 24 hours a day of what she gets fed and how much water and meds she gets so that I can keep up with everything she is supposed to have in a 24 hour period.

I have to clarify that on the days we are actually at home, SK is usually not dressed with her hair fixed that early in the morning. We have a much more laid back approach on those days. Take today for example, she is still in her little gown with some really big hair that is in desperate need of some taming. Aren't baby pj's so sweet? There's nothing like a warm cuddly baby all snug and cozy in their pjs. Now we are going to continue that trend and get all warm and cozy on the couch and take a nap together b/c guess just happens to be one of our days home this week.

Thursday, September 17, 2009

Our Date in One Day Surgery

He's baaaack!! Now someone please tell me how I am supposed to keep a 7 year old boy from running, jumping, biking, footballing, baseballing and all other things that are 100% boy. Oh, yeah and I have to keep him from doing all those things for THREE WEEKS!!

Jacob really is feeling so much better, his ear still bothers him from time to time and he still has gross stuff draining from it, but I can really tell that the hard part begins now. Trying to keep a 7 year old boy calm, do I get to sedate him for the next 3 weeks?

Now that we have been able to distance ourselves some from the emotions and stress that came with this past Tuesday, I can find a bit of humor in it. Chad and I couldn't help but laugh at ourselves when we realized the quantity of alone time the two of us have spent in One Day Surgery at Children's Hospital.

We commemorated part of our time together with a splendid lunch from the hospital cafeteria(ewww gross) and Chad made it even more special as he arranged our spread on the totally romantic and not icky at all hospital over the bed table, you know the one on wheels, nothing but the best for his girl. We also spent part of our time together, well let me correct that and just say that we were in the same room together...Chad was on his Blackberry and I was on the laptop, believe me people we are seasoned pros at this, I don't go many places w/o the laptop.

Now some of you may get a kick out of this and the rest of you will end up thinking less of me....but I am willing to risk it so here it is anyway. Speaking of the laptop, Children's Hospital has now banned facebook from their hospital server, it was also being extremely slow while I was trying to get on some other websites I visit too. But do you know what I had no problem getting onto? Well, actually Jacob had no problem getting onto it so then I just followed suit b/c I got tired of waiting for all the other sites to download. I promise you dial up would have been I had to settle for Webkinz World. That's right people I spent part of the time playing games and of course earning kinz cash for my kids on Webkinz World. I know y'all are all so disappointed in me aren't you, but some of those games really are fun and the surgery did last for 4 hours and 45 minutes. Sometimes a girl just needs a few minutes of mindless, harmless entertainment, you know? Don't judge me.

Oh I did manage to get on Facebook some that day too thanks to Chad's Blackberry, but it's just not the same to me as being on the laptop. I know I know, I am so yesterday, but I am just not used to FB via cell phone.

Thank you all for praying for us, cooking for us, calling us, visiting us and just all around loving on us this week, it has meant so much to Jacob and to our whole family.

Tuesday, September 15, 2009

Jacob's Surgery

My little boy is tucked all snugly into my bed. Daddy has volunteered to be on the couch tonight so that my little guy can be next to his mama, today has been quite a day for him. Four hours and 45 minutes of surgery time plus 45 minutes of recovery time will almost send a person over the edge.

We arrived at the hospital at 8:15, were in our room at 9:05 and Jacob was taken back for surgery at 10:45. At 3:30, Jacob was in recovery and the doctor came out to talk to us. He said the surgery went good, the reason it took so long was b/c the cyst in Jacob's right ear "was everywhere." It was just a very long process to remove everything. At 4:15 Jacob was brought back to us with a lot of packing over his right ear and a thing that goes completely around his head to keep the bandage in place.

We finally got to leave about 6:00, Jacob has had and is still having problems with nausea and all the gross stuff that comes along with that. I feel terrible for him, he can't even sit upright w/o getting sick. The only thing he can do is to lay on his "good ear" on the couch, he can't even change positions b/c he can't lay on his "bad ear." The look on his face says it all. It breaks my heart b/c those of you who know him know what a happy-go-lucky kid he is, he's hurting so bad. Thank goodness I know what to do about that, he will be getting his pain medicine (and I mean the good stuff) around the clock.

The best part about today was that we got to come home. We can handle a lot here, there was no way I was staying there tonight unless things were really bad. SK has always done better once we bring her home. Well, we are all home tonight, exhausted but home nonetheless and home will make it all better in time.

Thank you all for your prayers today.

Sunday, September 13, 2009

Girlie Girl

I was never a girlie girl growing up, I know I know it's a shock to those of you who know me, ha ha. You've always pictured me taking dance and being a cheerleader haven't you? I hate to burst your bubble, but I was a total tomboy...again shocker I know. So how is it that I am totally over the moon about all things sweet, sassy and girlie? If it's froo froo, frilly, or monogrammed I, I mean SK just has to have it.

Take a look at my girl...

Yes, she is totally wearing a tutu and wore it all day long Saturday just b/c she can. I would have died first if I had been her, am I doing her a disservice here b/c I think she is unbelievably darling. Her outfits have nothing to do w/how precious she is to me though? All this outfit talk is just a guilty pleasure of mine. She is so precious to me b/c God has entrusted me with her care while here on this earth. It is still hard to see all this as a blessing but nevertheless with God's wisdom and strength I will care for her to the absolute best of my ability until the day I or she is called home.

Her smile every morning or when I have been gone from her for a few hours is so sweet, it is the best part about waking up to me. Please forgive me, my boys just don't wake up smiling, they make me smile every other minute of the day when I most need it, but mornings are not their strong suit.

Sophie Kate knows me, how special am I that she knows me and her daddy and her brothers. In fact, she knows a lot more than I give her credit for...she knows her name, she knows when someone is talking to her, she knows when she's outside b/c it's when she's most happy, she knows when she's standing (with assistance of course), please God let her know she's loved.

Her smile is absolutely infectious...

Jacob's surgery is scheduled for Tuesday, please pray for him. He is completely unfazed by all this stuff, he is not worried one bit, so I am going to take my cues from him. I'll tell ya, I hope life never falls hard enough on him to take away who he is. God's got something great planned for this boy.

We are to be at the hospital at 8am, not sure exactly what time his surgery is scheduled for but I will update the website with information when I can. Thanks, guys

Friday, September 11, 2009

A Day Out

Why is that that I spent hours away from my kids and all the stuff I came home with was still for them? I guess it's b/c I just can't stay away from all the cute little clothes that are out there for SK. I had a mom's day out today thanks to my sweet friends. Now I definitely made time to have lunch with a friend, but I also did some shopping for the kids too. It really would not have mattered what I did, the only requirement was that it was a grown-ups only day.

I actually got out of my car at the different places I went today and walked straight to the door. I didn't have to get anyone unbuckled or in a stroller or have to keep anyone else from getting run over, what a concept...get out of the car and walk to the door. I felt like I was leaving something behind all day long. Oh, I certainly don't wish it was like that all the time, but it's always a treat for me to be out and about by myself from time to time.

A friend of mine stayed at my house and kept Sophie Kate and get this, she brought her violin and played it for SK. Is that not the sweetest thing? I'm sure it was a very sweet moment for them, SK has never heard the violin before and she loves music so much. To know y'all love her even when you don't have to means the world to me, that little girl has no idea how loved she is, what a blessing.

On a different note, Jacob's ear surgery has been moved up to Tuesday of next week so please be in prayer for him that day. Also, we have been having a rough time with Sophie this week in the evening and nighttime again. I don't know if we are still dealing with medication issues or what, but the nonstop crying from 6 or 6:30 until 10 or 11 is getting old, we are all frazzled and on edge b/c of it. She is an absolute angel from the time she wakes up until about 6 or 6:30pm from then on out nothing will console her, even if she is exhausted she will fight it to the bitter end. There is nothing I can do for her during this time, it kills me. Thank you for being diligent in bringing this before the throne of our Father.

On an even lighter note, my friend and I bought Trussville's Learning Express out of their last 3 bags of animals bracelets (all the rage here in the Birmingham area). So I get to be mother of the year when my kids get off the bus this afternoon, that's right way too much money for a bag of rubber bands that my children probably won't even care about in another week or two, if they hold out that long, but for a few moments they will think I am the best mama EVER!! Hope ya'll have a great weekend!!

Monday, September 7, 2009

In Good Times and Bad

Hooray for the three day weekend! Not having to get up and go anywhere was just the best, wasn't it? I hope it was for your family as well. We spent the weekend at my parent's house. My two oldest spent the night at their cousin's house Sunday night, Chad and the G-man bunked together, so when I woke up Monday morning I went and got the little princess and we spent a lazy morning together. She has been in a much better mood lately so we had some catching up and bonding to do and she was all smiles.

Hallelujah, we are 2 weeks and 2 days seizure free. I spoke to one of her doctors on Friday when we were trying to work out all of this new medication stuff. I had told y'all earlier that one of the medicines she was taking had a side effect of seizures and about the time we doubled her dose of that medicine (Baclofen) was about the time her seizures started so I was the one who was pushing for switching to a new med just to see if that might be the cause of her seizures. Well, when I talked to him on Friday I told him that we had been 1 week and 5 days seizure free to which he replied to me that he still wasn't convinced that her Baclofen was the cause of her seizures. You know what, I got to thinking over the weekend especially now that we are 2 weeks and 2 days w/o a seizure that maybe he's right...stay with me here. Maybe he's right, maybe taking her off the Baclofen isn't the cause for her being seizure-free, maybe we need to be giving credit were credit and praise is due. Well, really there is no maybe about it.

The Great Physician is at work here and with Him anything is possible. We have been praying for healing and for the ceasing of SK's seizures. We have been praying for God's wisdom and this has been proven to us over and over again...sometimes God chooses to work an absolute miracle, and He can do that at any moment, and then sometimes God chooses to work through us (His sons and daughters) and through modern medicine...whatever the route He decides to go it is ALL HIM and we are giving God 100% of the praise and glory for 2 weeks and 2 days w/o seizures. But please know this friends, if SK's seizures start back up 1 minute after I write these words, we will still be glorifying and praising God, not for the seizures, but for His love and faithfulness to us. For His promise never to leave us or forsake us, for the assurance we have as children of God that nothing can take us out of His mighty hands, that He will see us through and cause us to preserve in whatever life brings. We don't just praise and glorify Him for what He can do for us and give us, we praise, glorify and worship Him for who He is and we have found with everything we have been through, He never changes. He is the same loving God in the good times and He is the same loving God in the incredibly tough times.

I know I went way off on a tangent there but it is so important to me that I do not misconstrue words here...our sovereign Lord has chosen to answer some of our requests with a yes, He has answered some of our requests with a no, and he has answered some of our requests with a not right now. I don't understand it all and even harder for me to come to grips with is that it may not ever be for me to understand while on this earth , but one thing is for certain...God and God alone will be praised, worshipped and glorified in this house no matter what the circumstances. He has proven Himself faithful to us when He never had anything to prove.

We are still working through the dosages that SK needs with her new med so please continue to pray that each day gets better and better for her and that God continues to rain down his wisdom on us. We are so thankful for all your prayers.

Thursday, September 3, 2009

If Sophie ain't Happy ain't Nobody Happy

Alright, is everyone ready for college football kickoff weekend?!? We are totally pumped, in fact, so much more so b/c we are watching a game right now, yes Thursday night college football. You think you have to wait until Saturday and then Oh, what's this? A little gift from the football gods. Once all the seasons are underway, the only two days of the week that we will be w/o football are Tuesday and Wednesday, like I said in the last post, the most awesomeness of distractions.

Back to reality, but just for a little bit b/c it's really all I can take. I have had it up to here (you can't see me but my hand is way up high in the air) with reality. This has been an extremely difficult week for Miss Sassy. Unfortunately, she has not been feeling sassy in any way. The changing of medications is going horribly for SK. The only reason we are continuing on this path is b/c since we stopped her Baclofen (med given for muscle tightness) she hasn't had a seizure. We have been a week and 4 days seizure free and any other time you all would hear me screaming like a crazy person from my rooftop, but the other med we have started SK on to take the place of her Baclofen is not doing the trick.

She is absolutely miserable, crying constantly until 1:30 or 2:00am, unable to relax enough to sleep or even take a nap during the day. It is breaking my heart to see her this way, my happy smiley girl is gone and I feel terrible for putting her through this. So now we are faced with this most difficult question...go back on the medicine that made her our happy girl, but brought seizures along with it or stick it out with this new medicine with her miserable??

I am talking to doctors and pharmacists about this so we are trying to figure this thing out, but we need some serious wisdom from the Great Physician here. This constant crying is wearing on the whole family, sometimes we are not saying nice things to each other. I want my happy smiley girl back from this summer b/c if Sophie ain't happy ain't nobody happy in this house, it ain't right but that's just the way it is.

I am hoping for a better weekend compared to the week we've had, time for just hanging out, doing nothing, and not having to worry about homework, if Cooper manages to get through 3rd grade w/o me giving him an ulcer it will be a miracle. I really hate to say we need a break already b/c this is not how I pictured the school year to start (with so many issues, surgeries, etc). If we are needing a break this bad already I cringe to think the shape we are going to be in come Christmas, but nevertheless I am going to say it "We need a break."

I am looking forward to a 3 day weekend, please pray that SK is too. Thanks for checking in on us.