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!