So I've been a bit busy...

SuperTonka is home!! He came home August 3rd... Since then I've had a fulltime job working on getting his Drs appointments scheduled and happening, getting his therapies started, his food that he needs, etc... there's a reason new mommies, especially of super special kids look tired... it's not always that the child care is a lot, it's that the dealing with Drs, insurance, and paperwork is OVERWHELMING!  

Yesterday's snuggles after the audiologist appointment :-)

I've been reminded this week how much I appreciate all these appointments and paperwork and phone calls.  I have my son, he's here at home with me and doing all the things a newborn should be doing (eating, sleeping, pooping and crying!)  As a mom who has lost a child, I feel even more blessed that Alexander is home and doing better than I had expected.  We learned yesterday that not only is Alexander believed to be blind, that followup appointment is the first week of November, but he also has some sort of hearing loss.  We aren't currently sure of the extent of that loss and it's treatment, I"m waiting on a call back to schedule that appointment.

This week, I was reminded to be especially thankful, and to love on my kids even when they irritate me beyond all belief.  One of the football players at the High School passed away at football camp.  Everyone reacted as they should have with medical care and treatment, but sometimes, medical interventions just don't work.  I never had the pleasure to meet this young man, and I really wish that I would have.  His parents, friends, teammates, coaches and church family have nothing but GREAT things to say about him, and seem to be finding peace in knowing that he has entered the presence of the Lord.  

That being said... we sang a song at church on Sunday that has stuck with me throughout this week... one line in particular. The song is "Blessed be your Name" by Matt Redman... the one line that has been haunting my thoughts this week is this; "On the road marked with suffering, Though there's pain in the offering, Blessed be Your name." What a reminder. That God already knows what we're going through, He's just waiting for us to praise Him anyway.  When we don't want to, when we can't always tell that He's near, when the rest of the world thinks we should be falling apart and inconsolable and at the end of our ropes, God is there.  He's waiting, for us to praise Him, even when it's hard.   Even when we have to CHOOSE to praise Him, when all we want to do is question Him and His purposes.

I'll admit it, I'm not perfect.  There's moments, especially in the last few weeks that I want to question God's purpose and plan.  Why should any child be born with an incurable disease? Why isn't there more funding for research for that disease? Why are the possible complications of the disease so heart wrenching?  Why does Alexander seem to have so many issues on top of the Hydrocephalus?  Why did God chose US, weak, unknowing, generally overwhelmable US to bless with such a special child?!  It really has had to be a conscious CHOICE to continue to praise. 

Please, pray for us.  Pray that we will continue to see the good in all things and continue to praise.  That we will follow God's will and claim His promise that ALL things will work together for good for those who are called according to His purpose. (Romans 8:28) 

Home

The word home... four little letters, not a big word but it means so much.

Miriam Webster says that a home is where a person lives. Really, it's so much more than that. Home is where you live, where you feel the most comfortable, where everything is safe and well known, where daily life can happen without wondering if you're disturbing anyone else, where you can wash dishes in your underwear... if you so desire. 😉

Yesterday we headed "home" for football, cheerleading, and praise team practice. It sounds like a long trip, but really, all those practices happen at the same time! It's a blessed thing to be able to stay here at the Ronald McDonald house near Alexander, but still be close enough to home that we can let the kids have some semblance of normalcy in the midst of all the hospital craziness! It definitely isn't easy, or cheap, driving a big ol' Suburban back and forth, but the smiles on their faces, seeing friends, and participating in something other than medical speech is totally worth it! And for me, going to praise team rehearsal is another worship service during the week. It was so nice yesterday just to relax and sing and praise and not think about medical crap and beeping monitors.

I also have a new fulltime job. I have been and will be spending LOTS of time on the phone and computer making sure that Alexander has the best doctors, all the therapies he will need with the best therapists, and anything else he needs! It's kinda crazy thinking that we might get a dog back inside the house. Daddy had stated NO MORE DOGS, but I'm thinking that a service/therapy dog may be in order. It'll be easier taking care of a dog that goes everywhere with us ;-).

Alexander is HERE!!!

So, it's been a busy 3 weeks. Alexander decided that he did not want to wait until his scheduled csection date on 7/7 and he arrived on 7/2 when my water bike and we rushed to the hospital to deliver him in the best place possible for him and for me!

Since then, we've moved into the Ronald McDonald House which is such a blessing.  We ate able to stay about a block from Alexander and not have to live in the hospital eating only cafeteria food 😉.  We've made great friends here, they are also living here at the RMH, and their daughter is Alexander's next door neighbor in the NICU.  It's such an amazing thing to have a friend here that understands what we're going through. But, I know, that's not really what you want to know about!

Alexander was born on Wednesday, July 2, 2014 at 3:47pm.  He had brain surgery on July 3rd at
2:30ish pm to place a shunt that will drain excess cerebrospinal fluid from his brain to his belly so that his body can process it and get rid of it.  Over the last 3 weeks, his head circumference has gone down 4cm, but now is on the rise again, and yes, we had questions for the neuron team, but currently, they are not answered... I'm sure though that they will answer quickly as most everyone in this hospital is WAY on the ball and the definite best of the best.  Yesterday, Alexander had a 3-in-1 surgery.  He had. g-tube placed so that he has a more permanent feeding option whole he learns to suck and swallow and his gag reflex develops.  While the surgeon was in there, he also performed a Nissen fundoplication which will stop Alexander's reflux issues that were discovered by an Upper GI.  The third surgery was a simple circumcision.  I know I know, so many people are of the opinion that circumcision is mutilation and not necessary, for Alexander especially I believe that it was very necessary.  As he grows we do not know what his limitations will be, and if by doing a simple procedure we can take away what could turn into a hygiene issue later with his development, we'll give him the best shot we can!

So now we sit and wait, for hopefully not much longer.  Once Alexander is back off the ventilator (they leave little baby's on a bit longer so they can keep them drugged up with pain meds without compromising their respiratory systems) and off the morphine, and he tolerates his full feeds by the g-tube, he'll come home!  Trust me when I say, I CANNOT WAIT!!!

Ahhh... My life has A Plan!

Yes, yes I know, my life usually has a plan, even if the plan is to not have a plan :-).

I know, that was confusing for no reason... lol

We had appointments for Alexander today :-).  The fluid in his brain has continued to accumulate, but the good news is that his head has also continued to expand which does allow for brain development, assuming that's what God allows.  So, assu,ing that there are no proverbial bumps in the road... Alexander will officially join us "on the outside" on July 7th, surgery is scheduled for 11am! Yikes! Yay! And oh my wow, thats onky 2 weeks away!!

Summer Time!

I don't know what "summer" means at your house.... but at our house, it means we spend LOTS of family time together!!  It's great fun, even when we're simply cleaning the house together and tackling the big projects that don't get done unless hubby is home ;-)/  It also means mommy doesn't spend nearly as much time online!  I tend to not get on the computer unless I HAVE to, or if hubby needs me to do something for him online or for his work stuff!  So, it may mean longer between updates, but please trust that no news is good news!

Last week (Tuesday even) we had an OB appt and a meeting with the Neonatologist.  OB says everything looks great :-).  AKA it was one of those really boring end of pregnancy appointments where he measured fundal height and checked on Alexander's heartbeat.  He also became my favorite OB ever by listening to me cough once and prescribing an antibiotic to help me kick whatever was trying to bring me down!  The neonatologist consultation was much more exciting!  The general outcome of that conversation was that what Alexander has looks to be treatable, relatively easily, and NOT on an emergency basis!  So, we'll be able to move slowly and have a baby (scheduled c-section thanks to eeh size of his head) who will go directly to the NICU to start IVs and antibiotics as a precaution, but then we'll be able to slow down a little bit and assess and gather information to make informed decisions rather than jumping into surgeries RIGHT AWAY.  Doesn't mean that his surgery won't be within the first day or so, just that it will likely not be within hours of birth!  And, they want me to stay pregnant as long as possible so that Alexander will have as few "preemie" complications as possible... but the big meeting of the minds is tomorrow (the 17th) and they'll likely discuss then when we will deliver!  So, we could know a section date as early as when they're out of their meeting tomorrow, or as late as our next perinatologist appt and OB appt which is next Monday, the 23rd!!  EEKK!!  So, this week hubby is back to work, summer football practice started this morning!  and we have the "boy" room to get ready (it hasn't been painted since my little brother painted it 15 years ago or so... and you can definitely tell it was painted by a 10(?) year old...), and I should probably really start thinking about getting a hospital bag together. and we're having a YARD SALE this weekend, trying to boost the bottom line of our budget by a bit, since hubby doesn't get another paycheck til the end of JULY!

In other news, while I'm very thankful for medical insurance, it's really stressing me out right now.  I just got a bunch of paperwork in the mail to shift through about picking new plans and dates and EEKK!!  I have a BUNCH of doctors that are going to want to get paid, not deal with insurances fighting over who's supposed to pay... and you know they will argue about it... so, I must be off so that I can research and make an informed decision, and try to pick the best plan for ALL of us...   Thanks ACA. I REALLY appreciate it... NOT!!!

Phone Calls

Anyone who has known me for any period of time knows that I hate talking on the phone... I despise it.  Half the time I can't hear what someone is saying, usually because one of the bunch is yelling, sometimes because I just can't hear, sometimes because well, I'll admit it, I tend to multitask a LOT and I get distracted by the things that are in front of me rather than the voice on the other end of the phone.  Most phone calls, I let them go to voice mail, because I have no clue who it is that might be calling me.  Recently though, I've learned to jump and answer when the phone rings!  Remember when we all had corded phones and no Caller ID and always jumped and ran to the phone to see who might be on the other end?!  Yup, I"m turning into that girl again!  I remember when I was little it was usually my grandmother or my best friend down the street calling.  Now, I jump and run because it might be a Doctor's office!  I thought about this because the Neonatologist office just called.  I was getting all jittery and excited waiting for the phone to actually connect so I could talk to the receptionist... wondering if maybe, just maybe, the meeting of the high degreed, well practiced, smarter than me doctors was this morning. You see, when this meeting happens, they will be discussing Alexander's health and a proposed treatment plan for him, and discussing when will be the best time to schedule his arrival!  So, I answered, all excited to hear what Jessica had to say.  Yes, I knew who was calling before I answered since she is the only one who has ever called me from that office, and I have her direct line stored in my phone ;-).  So, are you excited yet?!  It was a really dull conversation, she just needed to change the time of our appointment, at the doctor's request, but no other information.  Just changed the time, which makes for a shorter day in Orlando, so there's always a bright side :-).

Now, if I could just figure out a way to turn the rest of the week of the doctor appointments on Tuesday and Hubby's work conference on Friday and Saturday into a vacation... I would so love to take the kids to the Tampa Aquarium and the Orlando Science Center...

Off to do some research into CHEAP tickets and a hotel room :-)... Hey, a mom can dream right?!

How Life Works...

Many people ask us about how we do things, or how our family operates, or how we make it work with all these kids!  Well, let me tell you this, it's not easy!! Until you work together.  and yes, I know I've blogged about this before, but as more people are finding our blog as I've been posting it more to Facebook (www.facebook.com/supertonka), I'd like to just answer them all here!

It all started like this... 

Yup, that's the day that Hubby officially proposed.  We already had quite the family, and wanted to continue to build it together!  We've now added 3 more to our brood, though most people only count the Hippo, since she's the only one they can see.

So... to answer the questions I usually get...

How can I stay home?  Well, because hubby works like a crazy person!  

By day, he is a High School Cafeteria Manager.  Does that bring home amazing money? NO!! not at all, but we pay our bills, have a roof over our heads and have gas in our vehicles, so does it really matter that we can't afford crazy vacations and trips to the salon, only sometimes when mommy isn't feeling like a DIYer...  

We pay cash, we save money every where we can, and though we do afford ourselves luxuries like cable and smartphones, we would cut those out too if it was a choice between those luxuries and feeding our family.  

We wheel and deal!  Hubby was (in another life) a businessman in the antique/art/auction business, and sometimes, when he gets a bug up his sleeve, he starts up again.  We'll buy something CHEAP at a yard sale and he trades and sells and buys his way into what he wants!  It's quite entertaining to watch, though sometimes the kids and I hide in the car so we don't have to listen to the man sell ice to Eskimos (no seriously, sometimes I really believe he could do it!). 

We aren't afraid to work oddball jobs!  Check out the How We Provide tab on our blog to see just what all we do!

And... to top all that off, I"m a photographer.  I work from home (obviously!), but because I can schedule photo shoots around our family schedule, it works out great for us!  I can shoot anything from families to newborns to weddings and commercial deals, so if you need something done and you're local, hit me up!!

How do we keep the house clean?

HAH! Hubby would say it isn't ;-).

But, we do what we do through TEAMWORK!  Everyone has a job, even the Hippo.  The boys deal with trash, everyone helps with grocery shopping and putting away, the kids put away the dishes that mommy washes, everyone puts their own belongings and clothing away, and CHORES are my best friend!  Everyone has their chores, and they have to be done, or the house will quickly fall apart and be nearly unlivable!  Just please, if you drop by and think that the house is a mess, remember that WE LIVE HERE, not just exist.

How do we get places in a halfway timely fashion?

Again, Hubby would say that we don't.  Simply because he lives on Lombardi time and thinks that "on time" is LATE!  but again, the way we get out of the house is simple, TEAMWORK! (Are you noticing a theme?)  Wherever we go does require pre-planning, at least to an extent.  I typically get the girls showered and dressed, hubby brushes their hair and diapers, zips and buttons as needed while I take my shower and get dressed.  The bigger kids help the little kids find shoes and get them on.  The big Bubba gets the diaper bag packed with essentials while I do the girls hair... seriously, their 3 heads and my 1 of hair probably accounts for at least half the time we get ready!  Sinead O'Conner might have been on to something with her haircut ;-)!  Than on our way out the door, hubby and I tie up any loose ends as the kids load up!

How do we feed everybody?

Well, at the table! :-).  I menu plan a week to two weeks at a time, I shop sales, and we aren't afraid of leftovers!  They might be reused in the original way they were cooked, or completely remade, but assuming that they don't get lost in the depths of the fridge (AKA behind the milk!) most everything gets used at least once more before it is all gone!  Our kids have to eat what's in front of them, thankfully we don't deal with any food allergies, and that's that!  You finish your appropriately portioned plate, and you deal with it!  There have been a few times when my spices went crazy and dinner was too spicy for someone, and in that instance, they had to try it, and were allowed to make a PB&J when their eyes started watering ;-).  See, I'm not totally mean!  Oh, and mommy cooks, typically daddy dishes while the kids get drinks and utensils, the kids run plates to the table, and EVERYONE clears their own plate!  Even the Hippo when we let her ;-).

I think that's about it for the "normal" questions!  Do you have a question?  I'll try my best to answer it... just leave it in a comment below!

My grace is sufficient for you...

It's what Christ said to Paul, and I believe that the promise of 2 Corinthians 12:9 is for me (and our family) too!  Paul was writing to the church at Corinth and he was telling them of a problem that he was having, likely a physical problem, and well, this is what he said: "7 and lest I should be exalted above measure by teh abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure.  8 Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong."  WOW. So the Apostle Paul, called out of sin by Christ Himself to spread the word of God to ALL people dealt with infirmities of all kinds, including those which God would not take away from him, telling him instead that "My grace is sufficient for you, for my strength is made perfect in weakness".  I've heard it all my life, that God is a gentleman who would never force Himself on any of us, but that He stands at the door and knocks and WAITS for US to open the door to Him.  But what happens if we don't open the door, well, the simple answer is that we will die in our sins and be eternally with the devil in Hell.  But if, no when, we open that door, all kinds of amazingness is opened to us.  God promised that in Him we would have life, and not just life, that we would have it ABUNDANTLY.(John 10:10).  So, when we put everything in Him, all the stress, the worries, the medical issues, just life... He promised that He would be our strength (My strength is made perfect in weakness), and that we would be blessed with an ABUNDANT life.  How awesome is that.  Just the reminder that I needed this week.

So, yesterday's Dr appointments.  Our perinatologist is amazing.  I remember at this point during pregnancy with John, every Dr appointment was all doom and gloom and there was simply no encouragement towards hope.  Now, for SuperTonka, all that is spoken of has hope!  The measurements on the ultrasound say that the Cerebral Spinal Fluid is building within his ventricles.  BUT it also shows that his head is continuing to expand with the ventricles, meaning that there should be less intracranial pressure, therefore less pressure on teh brain matter that is developing which should mean that it is less likely to be damaged.  I know, there are a lot of conditional statements in all of that, but really, we're still in wait and see because we can't test more or know more until he's born!  So our job int eh meantime is to get him here safely.  What we (and the doctors) are currently thinking is that we let him grow for as long as possible before delivery so that he will have the possibility of fewer complications of being early to add to the stresses of the hydrocephalus.  Sometime in the next week or so, the perinatologist, neonatologist and neurosurgeon will have their big monthly sit down and discuss all their current cases that they are working together on, including Alexander!  After this meeting, we will meet with the Neonatologist and get their recommendations, and likely schedule Alexander's arrival!

Please continue to pray for us as we walk this road.  It's definitely not a particularly easy road to walk, even knowing that God is in control and that His grace is sufficient and that we can claim His strength.  We do have to still live this summer, though Hubby doesn't work through the summer since he works for the school board.  And well, while we think we have the right amounts of monies saved for the summer's bills and life, we could be very very wrong about that.  We know that God will provide everything that we need, but please pray that we will take the opportunities that He gives us to earn the funds that we need for continued trips to the specialists, the expected longer than usual stay in the hospital far away from our home, and that we will be fully prepared for whatever comes our way with Alexander's arrival.

Choices

Life is full of choices... and this week, I've been reminded of just how many we have to make.
The kids have stayed up late every night for the past two weeks, why you ask?  Because Hubby and I made the choice to let them.  Why did we make that choice?  because we stumbled across the series The Bible on Netflix and we started watching it.  Ever since the first episode, they've begged to watch the next episode each night!  So, we made a choice, and let them watch it, all of it, yes, even the crucifixion scene.

Daily we are called on to make choices, as people, as parents, and as Christians.  All those titles come into play with every choice that we make.  The choice I had to make for today weighed heavily on me for a day or two until we got to church last night.  It's amazing to me how a Bible lesson meant for teenagers can have such an impact on my life as well.  For me, my difficult choice this week, was this... to attend the Spring football game with my family OR go to Praise Team Rehearsal.  I know, it sounds simple, but it wasn't.  You see, I've made a commitment to my family, and we participate together in 95% of what we do.  I say 95% because well, there are some things that we don't do together... work, praise team rehearsal, mens activities at church, "gender specific" chores. ((Yes, I know that's a totally different blog post, but yes, there are gender specific chores in our house... like the boys take the trash out, mommy and the girls fold laundry and wash dishes, daddy cares for the lawn.... it's how we live, just deal with it ;-))  So. That 5% makes up very little of our lives.

Last football season, even hubby coaching for the high school football team was a family commitment, have you seen how much laundry a football team can create? or how a bunch of football minded coaches take care in organizing an equipment room? or seen a large group of men try to figure out what size game pants need to be passed out every week?  Yup, in steps the mommas who can organize, and for us, that meant many hours of me and the little girls washing, drying and organizing, and then taking the whole family to pass out jerseys and game pants and make sure that everyone was properly suited up for the games.

So, how does one make a decision between cheering on her favorite football team and attending a rehearsal?  Well, eventually it's made pretty simple.  She goes to youth group.  And learns again about choices, and putting God first in all things.  I know I know, it's not like I would be missing a church service, or keeping the kids from a Bible class, it's rehearsal.  BUT. I made a commitment. To rehearse and to sing.  I may never be the next American Idol (great job, Caleb!), thankfully, I'm finally to old to audition... but I love to sing, and joined the praise team at church as a way to sing praise and lead others to worship through song on Sunday mornings.  And if I slacked off at rehearsal and sang without learning the songs or arrangements, well, God can take the not greatest voices and make them sound wonderful while singing His praises, but disharmony and wrong words just aren't acceptable.

So, I'll be at church rehearsing, with the two little girls in tow so that hubby and Bubba can be on the field with the team... knowing that I've made the right decision, to honor my commitment, and that I"m showing my children how to make tough choices by putting God first.

Longest Week Ever... Again

I know, every week seems like it feels like the longest week ever!  Whether it's waiting for payday (yay for paying bills!! LOL), waiting for a vehicle to be repaired (nope, hasn't been dropped off yet, :-)), or waiting for time to pass before it's the day to take a peek at Alexander again!!  Yup, today makes it ONE... MORE... REALLY... LONG... WEEK... until we see the perinatologist next Tuesday morning to see how Alexander is growing!

It's kinda crazy, at that point he'll be 31.5 weeks done growing (normal delivery is at 40, and currently the doctors are suggesting that he's born between 36 and 37 weeks) and only about 5 or 6 weeks from being born!!  ACK!! I'm not ready!  But then again, what mother ever is?  I mean, Alexander is our 6th child.  We've got the infant stuff pretty well under control... feed, burp, change a diaper, rock to sleep,  put him in the wrap and keep going with whatever else is going on!  But the addition another person to the family comes with it's own interesting problems to solve... like, how does a mom make it to the grocery store, without forgetting things, or losing her mind while she's there? Answer... the mind will always be lost, and something will always be forgotten.  How does mom make dinner when sh'es forgotten ingredients at the store? Answer... she's plays Chopped! with what's in the pantry.  Where does everyone sit in the car so that there won't be arguments, and the carseats can be reached to buckle and unbuckle?  Answer, where the seats fit, and they'll have to learn how to get along.  How does a family get to places on time when there are small children and a newborn to deal with?  Answer, well, they just do.  Daddy gets mean reminding mommy of what time it is (sometimes, it's just necessary), everyone has a job to do and does it, and you just go!  I guess what I"m really not feeling ready for is the remembering to pack bottles, and extra outfits, and diapers in two sizes, and yikes... I"m overwhelming myself for no reason, because it all works. As long as everyone works together.

And... I was going to say more... BUT, I'm being paged to pour some juice and snuggle a certain little potty trainer to sleep... it's rough being mommy ;-)

NFL Draft & Doctors Appointments

Yes, yesterday was Draft Day, and Dr Appointment Day, both important days to our family for various reasons. :-)

This last Sunday at Church, Pastor started preaching a new series on Family.  Ahh, the ups, downs, joys, sorrows and trails of family, and this particular week was about how to make our families stronger.  The six ways that Pastor presented for strengthening our families were, Commitment, Time Together, Appreciation, Communication, Coping Skills, and Spiritual Health.  As hubby and I sat in service Sunday, listening to Pastor, we were both randomly looking at each other, knowing what the other was thinking, and knowing how each of those things applied to our family, and how we've been working on improving in those areas.  It was awesome.  I know, that had nothing to do with Draft Day or Dr Appointments, BUT it did. and you'll understand as I keep rambling ;-)

So Draft Day, yup, I"m going to tell you all about that first, not because it's more important, but because I think I"m about to say something that someone else needs to read, and I don't want you to miss it, while you read on just trying to get to the part of the blog where I start talking about Super Tonka appointments!  I don't know how many of you are "football wives/widows" but trust me, it really is a thing.  Until hubby and I got together, I loved football.  The game of football, I didn't really care which team was playing, and you can ask the man, I still stay pretty clueless on the divisions and how all that works, but when it comes to what happens on the field, I've got a pretty good handle on it.  I even have a pretty decent three point stance :-)!  But Draft Day.  Waiting for pick 16, waiting to see what direction Jerry Jones was going to steer our Cowboys in, 150 minutes into the Draft, 160 if all the teams take their entire time... it was a really long wait!  But we spent the time together as a family.  Oh yes, all of us, eating junk food (Seriously, we had wings, tacquitos, potato skin, pizza rolls, and garlic bread leftover from our favorite restaurant), all gathered in the living room, watching, waiting, talking through the players, the teams, the choices, wondering what impact these young men would have on the teams that drafted them.  We talked through the draft choices, their strengths, what they would bring to their new teams.  And then I was wondering, what if we could draft our families?!  Isn't that what we do when we choose our mate?  We decide how they will fit with our ideal of a family, will they work in the "system" that we have instituted, are they worth changing the "system"?  What about drafting our children?!  Would we make the decision for the child that will be a blessing because of their own personal quirks, or would we all choose the child that was the EASY pick for our family?  Who would chose the kids that don't seem to be easy on anyone?  Wow, I'm really glad that that decision is left to God of which kid we get!!  And as for the Cowboys draft choice of Zach Martin, an offensive lineman... well, without the right men in the trenches, the "superstars" of the team can never get off the big plays.  I, well WE, are of the mindset that the line is the most important positions on the field, because without them, no plays, no matter how brilliant, will ever work.

And Dr Appointment day.  I think we've "drafted" the best team of doctors possible, both for my care and for Super Tonka's care.  (You liked that didn't you!)  Doctor appointment day is quickly becoming one of my favorite days, hubby and I gt to spend time together, talking without being interrupted, and at times just alone with our own thoughts, but together, which all of you parents know, is nearly impossible to find that time together.  Our doctors all seem very encouraging, yet very on top of the possibilities for not encouraging information to appear.  We are seeing doctors and specialists within the same hospital system so thankfully, all of our care can be coordinated rather easily!  Most of the information is quickly and easily transferred thanks to modern technology.  But the part you really want to know... the OB said things look great and his heart beat is strong!  They are listening to what the Perinatologist and the Neurosurgeon suggest for delivery and do know th
at I will not be allowed to go into labor on my own... since we live two hours away from the hospital where I will deliver.  That could get ugly...   We dropped off our copy of baby John's MRI to the neurosurgeon's office, along with a copy of his discharge papers from Florida Hospital.  (The records people weren't moving fast enough for our liking in getting the records moved to where they needed to be ;-).) Then, there was the appointment with lunch, AKA dessert for lunch.  Orlando Ale House, right next to Full Sail University, just go and eat either the Captain Jack's dessert OR the Captain's Nutty Brother.  Just trust me on this one. Then, we were off to the perinatologist appointment for a high level ultrasound and more brain measurements!  How exciting, I love seeing Super Tonka.  It amazes me that we can see and watch so closely exactly how God is forming him, exactly how He wants him to be.  \But what you really wanted to know... In the month between measurements, Alexander's left verntricle has grown from 13mm to 18mm, and his right ventricle has grown from 24mm to 39mm.  The promising part in this growth is that his head has continued to expand, allowing room for probably brain development despite the extra fluid, he head is currently measuring at 33weeks, though he is only at 25w 5d gestational age.  At this point the notes from the perinatologist say that the most likely mode of delivery will be by c-section, and that if the hydrocephaly continues at this rate, we may schedule c-section for 36-37 weeks depending on the neurosurgeon's recommendations.

So, please keep praying.  Our next round of appointments are on May 27th, we see the perinatologist in the morning, the neurosurgeon right after that, and then the OB in the afternoon.  And from there, we'll know more... at that point we will be 31 1/2 weeks pregnant, and likely only a month from meeting our baby boy! Yikes! How exciting!!

When it Rains...

... it Pours!

My garage is drenched.  Not to the point of mostly unsalvageable, but at 5:15 this morning... I would have sworn that I could swim in it!!

Hubby got in the shower this morning and was telling me that he didn't need coffee, he was wide awake thanks to only having cold water... so, I headed to the garage, like any good wife would.  (Started the coffee pot on my way past it ;-)).  We both figured the hot water heater had blown. Well, it's not the hot water heater... I walked in the garage to the sounds of a waterfall!  Apparently, before the washer filled to rinse the diapers for the final time... the hot water hose burst off the back of the washer!  It's connection was apparently rusty, and it had been running, for I don't even know exactly for sure how long, but probably since somewhere near 7 last night... I'm calling the water company later to see what kind of grace they will give us on our bill... So, long story short, waterfall, drywall (wetwall?), rusted tight valves that hubby had to break to turn the water to the washer off but leave the water to the house running... and I called the plumber as soon as they opened.  Add to that the fact that one kiddo woke up puking... and has continued to vomit, and it's going to be a very interesting day!!

But, God is good, He's got this too...

Cautious Optimism

That's the Neurosurgeon's words, that we have cause for cautious optimism where Alexander is concerned!  To me, that's a weight lifted off my shoulders!  In short, because I can't spell half the words in the report, the radiologists report said that they suspect that Alexander has Dandy-Walker Syndrome.  This means is that there is a cyst-like growth in the rear of his head that pushes on the drain between ventricles therefore causing hydrocephalus because the cerebrospinal fluid cannot drain through the compromised drain.  Approximately 1 in 2,500 people have some form of Dandy-Walker Syndrome, but there are many who don't even know that they have a "problem".  The doctor said that there are many who do not have to have medical interventions, but there are also many who must have medical interventions and therapies.  and we won't know where on that scale Alexander will fall, until after he gets here.  The recommendation from the neurosurgeon is to let him bake as long as we can and that his delivery will be based on recommendations from the OB based on Alexander's head size as we get closer to his due date.


In other News...
Do you ever wonder if God is simply testing your devotion to Him?  Ever wonder if He really is trying to test what you can handle?  Yup, I'm kinda feeling that way the last few days.  I've been stressing about our bills, because well, trips to Orlando every week to various doctors appointments aren't exactly cheap on the gas budget, or the food budget for that matter.  We've been handling it though.  Trying to get a boost in my photography business, trying to cut our other bills down, doing everything we can think of to not make the kids feel like we're really sacrificing, but to trim down our bills.  So far, we've changed our cell phone plans, cancelled Netflix, cut back on our eating out, working on reducing our water and power bills... does anyone else have any great ideas?  Our power bill was reduced yesterday by act of God... our upright deep freezer finally kicked the proverbial bucket.  I don't know exactly how old it was, but I do know that it moved to my parents house from my grandparents house in 1994ish, we inherited it from them a few years ago, and it has served us faithfully since then... so it was time for it to go, just really, it could've happened when it was nearly empty, not mostly full.  Hubby's description was the most accurate, it smells like death.  All our meat was in various states of defrost, the stink had started, and the cardboard that was in there already had the smell stuck in it... so that was a painful trip to the trash can.





Also, we got to take the little girls to Disney!!  Hubby had a work conference that the girls and I tagged along to, and they offered "cheap" tickets at conference prices for after 4 (4-11 is plenty of time for a rather preggo woman and two young girls anyway) the same week that hubby's bonus came in for being awesome at work!  I'm not sure who had more fun, me or the girls, it definitely wasn't hubby.  He could live without ever knowing that Disney existed.








All in all, it's a been a week full of ups and downs, but really, it's mostly ups.  We still have food to eat, we still have enough money for gas in the tank, the A/C is shot in the Suburban but its windows work, there really isn't much that can be thrown at us to keep us down!

What's in a Name?

What's in a name? That which we call a rose by any other name would smell as sweet. - William Shakespeare

A name is so important.  Not only is it what you are called by, but it's your title, your reputation, your history, all rolled into just a few words.  We decided on Alexander's name a LONG time ago... before I was obviously pregnant, before we knew he was a boy, before we knew he was destined to be required to be a fighter.  We really like the movies of wars, I know we have issues.  But when you think about those movies, they are legend mixed with a little history and even some Biblical references.  Think about 300, Troy, Alexander....
Then we looked up the meaning of the name Alexander... and learned that it's heritage is Greek and it means helper and defender of mankind.  What a name to live up to!  Of course, our first thoughts were football, being that the hubby nor I are small people, we're guessing that Alexander will be built solidly, and that's perfection for a lineman.  Think about it, the quarterbacks, running backs, and linebackers get the majority of the fame and glory for playing amazing football.  But if it weren't for the offensive and defensive lines, those boys/men would never have the chance to do their jobs.  There's a reason the "Great Wall of Dallas" will forever go down in history, that stories like that of Michael Oher will live on; without the protection and aid of those men, the Cowboys of yesteryear would never have gotten to where they did and there never would have been the story of "the Blind Side".  Even now, knowing what we think we know, and knowing the fight that Alexander has before him, we think of the examples he has that went before him, fighters (both physically and mentally) Alexander the Great, Alexander Hamilton, Alexander Graham Bell; all men who chased their dreams.
His middle name will be Luke.  My first thought of course was Luke of the Bible.  Apostle, helper, doctor... and then we looked up that name, of Latin origin meaning Light.  Just like the Bible says in Matthew 5:14 "You are the light of the world.  A city set on a hill cannot be hidden."  Wow. so we've saddled our son with the name Alexander Luke... A helper and defender of man who will also be a light.  So glad it's not my name ;-).

A good character is the best tombstone. Those who loved you and were helped by you will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble.

Charles Spurgeon

Then we were thinking.  So many people I see that call their children, fighters of all things from cancer, to mitochondrial disease, to autism, to debilitating allergies, they call them their superheroes.  I completely believe that they are Superheroes, sent to teach us to truly love, to fight our way through life, these kids are so much smaller and many frailer than we will ever be, and yet they go through so much.  So, I was thinking, that Alexander (or Xander as he is known is certain groups of our friends), needs a superhero name.  Much like Batman and Superman have alter egos, Alexander needs one as well.  My mom hit the nail on the head.  Alexander will be known as "SUPER TONKA". Hubby's nickname since his teenage years has been "Tonka", because he was as tough as a Tonka truck.

So it's not the greatest picture... it was still healing... 

Ok, so it was a mirror picture... but you get the idea... I made that shirt when I was pregnant with John... 

And when John was born he was known as "Tiny Tonka".  So it's only fitting that Alexander will be "Super Tonka".  Now... I"m off to find him a cape... And for those that are wondering, because I"m sure you are... the "Tonka Tough" March of Dimes fundraising team will be reinstated, and will do more than jsut fundraising for March of Dimes!

Now... to find a cape!

The one thing I want to leave my children is an honorable name.

Theodore Roosevelt

Feeling Overwhelmed

Overwhelmed.  It's becoming all too common of a feeling.  It seems that no matter how many "ducks" I have rearranged to go into the row that I need them in, there is always something that comes along and "unrows" my "ducks" and it's really starting to get annoying.  I tell people often that when my children aren't listening it's like herding frogs trying to get them all headed in the right direction, and right now, I feel like sorting out our lives is like herding frogs, or maybe lizards...

I got an email.  I love and hate that email all at once.  It offered a chance to talk to and commiserate with a mom of a child with hydrocephalus, as only mothers facing similar lives can commiserate together.  But it also offered up the reality of a scary proposition.  Apparently, the average bill for the surgery that Alexander will likely need within days of his birth is $30,000.  and that doesn't include the time he will spend in the NICU, his delivery, my care, or making ourselves available to that care.  And that's if his surgery is "normal".  While I hate that the price tag of modern medical miracles is so expensive, I am also extremely grateful that we have the access to that medicine.  I'm left wondering now what insurance will pay of that, will his care be normal, what interventions will he need beyond that... and yet, I also know that my God is a great big God and He can do amazing things, including having it in His great and mighty plan to have us give birth to a perfectly healthy boy that needs NO medical interventions EVER.

I have heard a time or two to just let go, quit planning and trust God to heal.  Well, I do trust that God will heal, but I also know that sometimes His will is not our own.  Maybe for some reason it is His will that we have a son who needs medical interventions, maybe this is His way of showing us where He needs us to be in life.  Maybe I'm the loud mouth that will work to educate people on Hydrocephalus and raise money for research for a cure!  Yup, you read that right, currently there are only treatments for the symptoms of hydrocephalus, no cure is currently available.  After some quick research, I find that in America alone there is approximately $1 billion spent annually on the treatment of hydrocephalus, and that there is not nearly that much spent on researching a cure for the disease.

Through it all, I keep praying.  Keep asking God to give me a perfect, healthy boy.  But, I will continue to prepare for my son to need the medical interventions that he is expected to need.  I will prepare to get him all the care he may or may not need.  But I will also prepare to continue to attempt to educate people about hydrocephalus, the need for a cure, and the care that goes into an abundant life for those living with hydro.  The song that's been playing in my mind today... it's been quite the comforting ear worm, hope it is for you as well...

Because He Lives

God sent His son, They called him Jesus

He came to love, Heal and forgive

He lived and died, To buy my pardon

An empty grave, Is there to prove

My Savior lives

Because He lives, I can face tomorrow

Because He lives, All fear is gone

Because I know, He holds the future

And life is worth the living, Just because He lives

How sweet to hold, A newborn baby

And feel the pride, And joy he gives

But greater still, The calm assurance

This child can face, Uncertain days

Just Because He lives

And then one day, I'll cross the river

I'll fight life's final war with pain, And then as death

Gives way to victory, I'll see the lights

Of glory and, I'll know He lives

A Peculiar People

Life isn't always comfortable. Maybe it's in dealing with our comfort zones that Christ calls us to be truly different.  As Christians, we are called to be a peculiar people (1 Peter 2:9); a people that the world can look at and see that something is different.  It doesn't mean that they will understand, even with explanation, because Christ said that until a person is ready to receive Christ, he will not understand the ways of God, and therefore will not understand the ways of a Christian who is truly following what God has in store for him.
All that being said...
Last night at Youth Group we started studying the story of the Samaritan Woman at the Well.  I know, anyone who has been to church for any length of time has likely heard the story... Jesus goes to Samaria, sits at a well because he's thirsty, and so on and so forth... but if we really READ what the words say the story takes on a whole new meaning.  I know - this is going to get harder to read, but bear with me... the passage from John is this... (My words and notes in BLUE)

John 4:1-18 (BibleGateway - New King James Version)
Therefore, when the Lord knew that the Pharisees had heard that Jesus made and baptized more disciples than John2 (though Jesus Himself did not baptize, but His disciples), 3 He left Judea and departed again to Galilee. 4 But He needed to go through Samaria. Christ NEEDED to go through Samaria.  No normal Jew would go through Samaria, but would pass around, despite being way out of the way, because they wanted nothing to do with the Samaritans who they viewed as "lesser" people because they had intermarried with other religions and were no longer a pure people. 5 So He came to a city of Samaria which is called Sychar, near the plot of ground that Jacob gave to his son Joseph.6 Now Jacob’s well was there. Jesus therefore, being wearied from His journey, sat thus by the well. It was about the sixth hour. About noon - remember that without watches and alarm clocks and satellites to set the time, in ancient times, people told time by the sun, so the 6th hour would be about 6 hours after sunrise, somewhere near noon. 7 A woman of Samaria came to draw water. Jesus said to her, “Give Me a drink.” Really, a woman walked that far to the well with her water jugs to gather water for her family at noon?!  That's not normal.  The historical norm was for a woman to go around sunrise to get her water for the day... and then again around sunset if she had need.    8 For His disciples had gone away into the city to buy food. Beyond that Christ was alone as He had sent the disciples into the city.... so we have here a Jewish Man speaking to a Samaritan Woman.... all KINDS of cultural norms being broken.  9 Then the woman of Samaria said to Him, “How is it that You, being a Jew, ask a drink from me, a Samaritan woman?” For Jews have no dealings with Samaritans.  10 Jesus answered and said to her, “If you knew the gift of God, and who it is who says to you, ‘Give Me a drink,’ you would have asked Him, and He would have given you living water.” 11 The woman said to Him, “Sir, You have nothing to draw with, and the well is deep. Where then do You get that living water? 12 Are You greater than our father Jacob, who gave us the well, and drank from it himself, as well as his sons and his livestock?”  13 Jesus answered and said to her, “Whoever drinks of this water will thirst again, 14 but whoever drinks of the water that I shall give him will never thirst. But the water that I shall give him will become in him a fountain of water springing up into everlasting life.” 15 The woman said to Him, “Sir, give me this water, that I may not thirst, nor come here to draw.” 16 Jesus said to her, “Go, call your husband, and come here.” 17 The woman answered and said, “I have no husband.” Jesus said to her, “You have well said, ‘I have no husband,’ 18 for you have had five husbands, and the one whom you now have is not your husband; in that you spoke truly.” 

Ok - so I'm going to stop the story there for now.  So Jesus NEEDed to go through Samaria (Weird), He talked to a Samaritan (WEIRDER), the Samaritan was a Woman (EVEN WEIRDER), and He spoke to her the truth concerning Himself as Savior and of her past. (Really, does anyone but Christ know all of our secrets?)

Think about it.  Christ told us to Go and preach Him.  He gave this example of going outside our comfort zones, into places where people don't always believe what we believe, and truly caring for people, no matter their circumstances, their past or their present.  It reminds me of what a preacher I was listening to once said "No ones cares how much you know, until they know how much you care."  

As we're going though everything in our life right now, as we wait on Alexander to make his arrival and prove doctors wrong... I'm very much outside my comfort zone.  I like knowing and planning and being prepared.  I do not like expecting the unknown.  No matter who I'm talking to, I try my best to explain the peace that Christ promised to give us, that He has given to us as a family.  So, yes friends, though I have my weak moments when I'm scared for the future, dreading the reality that I may one day hold my son as he takes his last breath.  I have a peace, a peace that surpasses ALL understanding.  I know that no matter what happens with Alexander, my God is in control.  He has an amazing plan, though we may not understand.  And no matter what, I'm still praying for a complete healing, that as we continue visiting doctors and planning for Alexander's arrival, we may be able to share with the Doctors that we DO know how he was healed, he was healed by the faith and prayers of MANY who are praying with us.  Thank you, for all your prayers, and your support.

All.

You are my strength when I am weak

You are the treasure that I seek

You are my all in all

Seeking You as a precious jewel

Lord, to give up I'd be a fool

You are my all in all

Jesus, Lamb of God

Worthy is Your name

Jesus, Lamb of God

Worthy is Your name

Taking my sin, my cross, my shame

Rising again I bless Your name

You are my all in all

When I fall down You pick me up

When I am dry You fill my cup

You are my all in all

Jesus, Lamb of God

Worthy is Your name

Jesus, Lamb of God

Worthy is Your name

You Are My All in All Written by: Dennis Jernigan

This song will always hold a special place in my heart.  If I ever quit singing long enough to just close my eyes and remember I'm transported back to the Island of Aligandi, Panama in the Summer of 1998 with my team from Teen Missions International.  I can still hear Joe playing his guitar and Lena singing... but if I really listen, I hear the words.  You are my strength (Thank goodness, because I have very little...) Lord, to give up I'd be a fool (Well, yeah... If He's truly my strength, why would I have a need to give up?)... When I fall down you pick me up, When I am dry you fill my cup (Wow, just wow, He cares THAT much about ME!)  What a glorious, might God we serve.

In other news, Alexander is starting to really make his presence known.  Kicking and squirming when I try to lay down... or his sister sits on top of him... lol...  It's so encouraging just to be able to feel him move.  Only 4.5 days until we leave for our Spring Break Vacation.  We prepaid a hotel forever ago, and now it's finally come time to use it!  We're still hoping to be able to take the kids to Disney, but I don't know if it will happen.  Our amazing friends set up a fundraiser for us, which puts Disney in much more reasonable sights, but there's only so many days left, and I'm trying to not gets my hopes set too high.  I know that our God is mighty and can do amazing and wonderful things that we don't expect Him to, but you never know what His plans truly are until we just slow down and wait on Him.  (I'm not a very patient person.)

Have a wonderful day, and remember, Jesus really is ALL that you need.

Life Happens...

I know I've been a slacker about blogging, I'm sorry. Please forgive me, and be prepared to be bombarded with lots and lots of musings from this side of the computer screen.


March 7th.  Our Day which shall forever live in Infamy.
We headed off on that fateful Friday afternoon to see our favorite OB/GYN for our 20 week anatomy scan.  We were more concerned about boy vs girl than anything else, but all that really didn't matter as long as our baby was deemed healthy. Yay!!! It's a boy.  His name will be Alexander Luke. And then, the scan continued.  We learned that baby Alexander will likely have the same problems that cost his brother John Dallas his life.  Our world stopped turning, at least for a moment, and then we snapped back to reality as our almost 10 year old explained to us exactly how he needed to move the furniture around in his room, so that we could put the crib in the boy room!  I sat and wondered, didn't you just hear? Do you not understand? Am I really going to hold another son while he takes his last breath?

John Dallas. 10-26-2011 - 11-12-2011

As heartbreaking as it sounds.  There is hope.  We have been placed in the care of an amazing team of Doctors.  Doctors who are encouraging hope, and a chance at life, and proper care, rather than encouraging the termination of a pregnancy.  Already we have undergone more followup testing than anyone ever even suggested for John.  But beyond that, our Hope has a name.

Our Hope is placed in no one but Christ alone.  I won't lie and say that it's easy, it's a lot harder than I even feel like it should be just to trust.  As the song says, (lyrics to In Christ Alone, as sung by Natalie Grant)...
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.

Please, join us in praying for a miracle.  Our Facebook page... for faster updates and LOTS of pictures... Praying for a Miracle.