Better report!

Zeta has had a much better day!

No fever, no seizures!!  Hooray!!

Steven tried to teach her how to enjoy a lollipop.....

Maybe we should have found a smaller one!

 Zeta sure seemed to enjoy it!

But we decided we might better stop....sugar kind of makes kids in our family act a little crazy:)

Thank you for all of your prayers!!

The start of cold season already??

Zeta is sick.

She has a cough and an ear infection.  She ran fever and had several small seizures yesterday. We are working to stay on top of the fever and so far the seizures have resolved.

Please pray for compete resolution of the infection, fever, and seizures.

Pray that she does not have to go back to the hospital.

Zeta had a scheduled well-check appointment with her pulmonologist yesterday morning, but she became ill on the way there.  I am so thankful for her pulmonologist!  She is so kind, and sweet, and caring! 

Thankfully, we have pretty much always been blessed with wonderful medical staff!  (Dr. Grant-Smith, I think Zeta must be beckoning you to come home from your honeymoon lol.)

Sorry for the short update.....long night:)

Hope everyone has a wonderful day!
Angel

Open Doors

"Life is no straight and easy corridor along

which we travel free and unhampered,

but a maze of passages,

 through which we must seek our way,

lost and confused, now and again

checked in a blind alley.

But always, if we have Faith,

 a door will open for us,

not perhaps one that we ourselves

would ever have thought of,

but one that will ultimately

prove good for us."

A.J. Cronin

Concentrate very deeply on that last part........if we have Faith....change can be good for us.......

Change is often difficult.  Even wanted change causes chaos at times. 

Think about it....we work so hard to get to a certain place in life, but it never seems to be enough........

Do you ever feel like there's something bigger, something better you should be doing?

I've often felt that way.....I've felt like something was lacking.....I've felt as though there was something 'different' I should be doing with my life....I assumed it had something to do with my career.  After all, that's part of the ultimate American dream, right? I mean...have a family, set goals, make a difference?  I knew when I went into teaching that it was right for me - at the time.  I also knew that it wasn't what I wanted to do for 30 years...I wanted something different....I wanted to make a different impact on lives.....I just wasn't quite sure what it was....  When I went back to school for my Masters degree I settled on School Counseling....it would be right for me -at the time - but in the back of my mind I still had the goal of a PhD and doing something 'more'.  I worked just a few years in counseling.....and let me tell you, I loved it!!  I (thought I) had attained my (then) current goal....I was beginning to help kids more in the way that I envisioned......

Then my life changed.  I became pregnant with our third child.  This was kind of confusing.... you see it wasn't part of my master plan......but still, I knew I already loved this child......then came more changes.......Zeta was born with some health issues.......and things continued to change.......for a long time it seemed like the health issues just got worse instead of better..... I couldn't quite figure out how to fit all of it into my plan.......but.......like I've said all along......it was never my plan......

Now, I have new goals (and new plans- imagine that).........and know what? I find that most days I feel content that I'm doing exactly what I am supposed to be doing.....I'm not searching for the bigger and better things to do........ because I have FAITH that this door was opened for me for reasons beyond my understanding.....

I'm learning so much about people....and love.....and prayer....and faith.....and so much more about myself.......

I'm learning things from people who don't even know that they're teaching.........

For instance, a couple of youth groups came by our house this evening - to hear so many of these young people praying aloud for our daughter, our sons, our family..........INSPIRING is all I can say.....

To see Zeta's face light up - like she absolutely knew she was the center of attention........to see how this tiny little person brought all of us together......that's the kind of difference I've often searched for.....

To know that these young adults might rather be doing something else...,,that their leaders may have had a long day at work......but yet they came together to show us love and compassion.....

I can't explain the intense emotions of having  a special child.......

Think about the time you were most scared in your life........then think about how you would feel if you won the $100 million jackpot...now imagine those conflicting emotions together and living like that year to year.....month to month....week to week....day by day....hour by hour......minute by minute.....

Pay attention to your blessings and the doors that open for you....It may not be what you planned, but it will most definitely be what you make of it!

Jeremiah 29:11

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Miracles do happen....EVERYDAY!

Even the smallest person can change the course of the future.  J.R.R Tolkien

I'm going to tell you something.....

                                 But......you have to promise NOT to tell ZETA!

We have been home longer than EVER........closing in on SIX WEEKS to be exact!!!

I don't think we've even TALKED with a doctor since August 26th!!

And we don't have an appointment scheduled until NEXT WEEK!

!!!!We're talking like GOLD MEDAL status here!!!!

If we stay out of the hospital until the end of the month (when her next surgery is scheduled) then we'll be talking WORLD RECORD !!!

Do you believe in miracles??



    I DO....



Because I have three of them.........

God has most definitely shown his MIRACULOUS favor in Zeta's life!

Zeta continues to do well. She continues to improve since surgery to move a hypothalamic hamartoma from her brain in July. Last week, she went about 12 HOURS (in a day) without oxygen or the ventilator.....This is the LONGEST she has been without ANY type of breathing assistance since October 2010.....she kind of crashed after that so we figured we should slow down a bit.....so....for now she is just on MINIMAL oxygen during the day and on the ventilator at night.... I kind of think maybe she could go without the vent at night too, but I'm a little weary about trying that out.....so for now we just try hourly 'sprints' without oxygen during the day and keep her on the vent at night.....She is soooo interested in eating - she KNOWS when it's time to eat....I've been giving her tons of 'taste' tests during her tube feedings, but more recently she coughed some food out of her trach and it kind of scared me so I'm going to hold off until we see her pulmonologist Monday. I have to say it has been so WONDERFUL to watch all of the changes and progress made in the past couple of months since her surgery........if you ever doubted God's EXISTENCE or HIS ability to HEAL, I hope that ZETA'S story gives you some encouragement.......I KNOW it has changed the way I think about so many things.......

"
Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us."  Ephesians 3:23
 
Even the smallest person can change the course of the future. J.R.R Tolkien


My 3 children have forever changed the course of my future!!

Males and Females....

Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing. ~Mother Teresa

This was last year.....they're growing up way too fast!

Ok, so I know there are books and research galore about the difference between men and women...but sometimes it doesn't make it any easier to understand MEN.

I asked Stevie a simple question last night, "If I bought a small, old car for under $1,000 and it lasted me 6 months it would be worth it in gas, right?" It wasn't really a question....just a passing thought.....

Why, oh why did I ask that? It turned into a 3 hour ordeal about how I'M finally going to know what it's like to worry about money....you see, he was 'kind' enough to point out that I've been spending loads of money on gas every time Zeta is home from the hospital - going back and forth to appointments, etc. - but, he told me, "You haven't realized it because you've had your mind so wrapped around Zeta's problems, as you should, and you haven't realized anything about money."

This is all very true. I haven't worried about money. I tell people all the time, I gave that all to God a very long time ago - and we haven't had to go without. There's no way I could handle worrying about Zeta AND money.

Sometimes I feel like Stevie has the LUXURY of going to work. I mean, he gets to think about something other than all of Zeta's difficulties and how much our life has changed. He can (or rather, HAS to) shut off the emotional stuff. I realize that going to work probably does help him and gives him the opportunity to 'shut' everything else out, but I also realize that that's the way MEN deal with things....they feel like they have to be DOING something. Our family is blessed to have a man that works to provide for us.

When I think rationally, I realize these things.

But, let's face it - these days - I'm NOT always a rational thinker.

For instance, last night, I had Zeta's fractured leg unwrapped. Stevie called me to the den to watch him move her leg and then she started crying...."Look," he said, "She cries when I move that leg."

"Well, of course she does - that's her broken leg!" I replied in disbelief....I wanted to say a lot more, but decided to hold my tongue..... I mean really, how does he not know which leg is broken?!?!?!?

You see it is just as hard for him to believe that I am just now figuring out that we might need to be concerned about money as it is for me to believe that he doesn't know every detail of Zeta's health issues.

While we are on the subject of money, I have a confession....

Sometimes, I get really worried and overwhelmed about all that people do for us.

I mean, Zeta has her own 'logo' and assortment of 'merchandise' ....people are continually doing for us....continually giving......a friend recently wrote to me, "I feel like a dork sending you money, but I feel so helpless- go buy Zeta a dress and some bows or something." I know that feeling all too well.......and it still feels pretty weird to be on the receiving end of so much support. I don't know what I'm trying to say here.....I just want everyone to know we are so very appreciative....BUT we are not looking for anything.....We try to ensure that we are thoughtful and cognizant of EVERYTHING that people do for us.

The good part of all of this is that now I'm ABLE to worry a little bit about things OTHER than Zeta's health status.

I've been through a HUGE emotional 'letdown' the past few weeks. One of Zeta's home support people gave me a 'baby blues' checklist....and it told me I was 'moderately depressed.' This wasn't a huge surprise. Moms, you can relate to those 'baby blues' you had after you brought your newborn home....now, imaging living in that newborn mode for a year and a half.....I've often read that having a child with special needs is like experiencing a newborn - EVERYDAY - no sleep, exhaustion, the disruption in home and marriage....the change in family dynamics, etc, etc. I have lived - or rather, survived, on adrenaline for the PAST 18 months. Since Zeta's surgery it's as if she has been re-born in a way. I'm finally able to come off that hyper-diligent mode a little more.....BUT it's scaring the heck out of me....

I can allow myself to actually feel my feelings....and I don't always like it.....then there's the 'what-if' scenarios that always pop into my mind too.....

It has been 6 weeks since Zeta's surgery (4 weeks since we've been home). We saw some small seizures immediately after surgery and the day we flew back home. (Now, remember- she was  having small seizures pretty much daily and larger seizures if she was sick prior to the surgery.) Well, for the past 3 days I have seen some questionable seizure activity - all VERY brief. BUT all the what-ifs cloud my brain......I had my mind made up that the seizures were COMPLETELY GONE.........so, DISAPPOINTMENT at seeing this questionable activity is an understatement.......BUT....my 'rational' self tells me that if we went from daily seizures to seizures every 4-6 weeks it is still a TREMENDOUS improvement......I don't want to live in FEAR......or darkness or depression......so I HAVE to get a GRIP!!

Do you ever feel like this???

There is nothing funny about depression, and I know many people have chemical imbalances that medication CAN and DOES help.....but I firmly believe that you also have to take an ACTIVE part in your own thinking. There isn't a magic pill that is going to take ALL of your problems away.....(although sometimes I surely wish there was!!) 

I recently told someone going through the grieving process that I know some days she must feel like she's just going through the motions and giving a 'performance' to those around her.....I feel like that sometimes.....but, you know what? If you go through the motions enough and put a smile on your face - even when you don't feel like it- (AND you ask GOD for strength) eventually, it's not an act anymore.....because .....because you finally find your logical, rational self and realize that THERE are still a LOT of things to be thankful for......

Some days, I feel like I've become my own therapist through writing lol.....and all of you are the greatest counselors in the world - you know, counselors are excellent listeners, and those of you that take time to read about all my problems have to be pretty superb to read so much:)

Zeta has had us scratching our heads the past couple of days. She hasn't really been sick, but she hasn't been herself either. She seems to be trying to do more with her leg...but she seems a little agitated and we can't figure out if her leg is bothering her (I don't really think that's it) or if it's something else. Remember, I said I felt like I've seen some seizure activity here and there - we've been working her a little harder (more sensory stimulation).....so perhaps that has something to do with it..... but, all things considered she is doing well!

 

Thank you for your continued prayers!!!!

Zeta loves her big brother - but Chancelor isn't so sure about the BABY SLOBBER!!!

Life is like a mirror, we get the best results when we smile at it. ~Author Unknown

So take a new grip with your tired hands and strengthen your weak knees.  Mark a straight path for your feet so that those who are weak and lame will not fall but become strong. Hebrews 12:12-13

This verse is appropriate for us in so many ways - both literally and figuratively.... I've been feeling tired (and pitiful, pathetic, depressed - poor, pitiful me-remember?) and Zeta's knees are weak......

Whoa be my soul, Whoa be to Zeta (or some strange saying like that)!

We found a draw-back to Zeta feeling so well......Two steps forward - one step back.....She had some pretty intensive occupational and physical therapy Thursday - probably the most she's ever done.  I noticed that by the second hour she was very irritable (which is not like her - unless something is REALLY wrong).  I also noticed that it seemed to be a little worse when the therapist focused working on her right leg......regretfully, I shrugged it off as her just being a little tight and getting tired of therapy.  We noticed that she was still pretty irritable when we got home.  She seemed to cry every time we touched her.  When she woke yesterday morning I thought about how she seemed to get more upset with movement of her right leg so I tried putting some pressure on that leg and she immediately started crying.... I knew something had to be WRONG. I told her nurse about it and she noticed that Zeta was 'guarding' that leg and not moving it at all.  So, I called and made an appointment with her pediatrician.  I was really hoping she just pulled something - or maybe even was just sore.

We saw her pediatrician, and she sent us for x-rays.  She told us to stay in town after the x-rays so she could call us with the results.  It was obvious that she presumed something was broken. When they were done with the x-rays they told us to just wait at the hospital until they talked with the doctor.  That immediately told me they saw something on the x-ray. A few minutes later her pediatrician called and we were headed to MUSC to see an orthopedist.

We spent ALL afternoon in Charleston.  The initial x-rays were hard to read because it was hard to tell what were actually fractures  and what were actually just her bones.  They said her bones look very weak and brittle.  They decided to do more x-rays and found that she has a fracture and chip on the inside part just below the knee.  Once they figured that out we had to wait for them to decide what to do.....Thankfully - NO SURGERY!!! No cast - she doesn't weight bear or walk so really no need.....the big question was whether or not to splint it? Zeta got a little tired of waiting....

Really, I think she was just HUNGRY!

They finally decided that it would be better  NOT to splint it because she is keeping that leg still on her own, and we know not to be working that leg.  With splinting and her thin skin we would have to worry about skin break down and then risk for infection, etc., etc.  Sooo.....we finally made it home around 1 AM last night. 

I am so very thankful for Zeta's nurse.  She stayed with us the whole time.  I really felt awful that she had to drive almost another hour to get home after we got here (and got Zeta in and settled).  By the time I was finally settled and getting to bed (just before 3) she called to let me know she had made it home safely (now that's dedication!!!:).  We are very blessed to have someone who genuinely cares for Zeta!

Other than the broken leg, therapy went well :) Her SPIO ( a special support suit) came in and she did even better with sitting upright - plus she looked so darned cute - like she was getting ready to go to dance class lol!  I've had visions of more consistent, intensive therapy (in order to catch up with all she has lost over the past 17 months) but I guess we have to put it on hold a little longer - No physical therapy for at least 2 MONTHS!!! UGH!  Oh well, like I  kept telling myself yesterday.....She's not blue....and she can breathe.... and she's not having seizures.....for now we'll just wait on the therapy and dance lessons :)

We continue to shout our praises even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next.  From Romans 5:3-4

Parents.....

Have I told you I have the best parents - EVER!?

When I was a teenager you could not have told me that I would feel this way.  I thought my parents were too strict, too mean, too 'uncool'.  They just didn't 'get it.' All very cliche' I know, but  - I've 'seen the light!'  I am thankful for my parents choosing not to be my friend.  Instead, they chose to discipline and try to teach me about life. 

Looking back, I don't think I was spoiled - but I definitely didn't want for anything.  I think about all the trips made to practices and games.  All the money that was spent for proms, pageants and other girl stuff.  I realize that my parents taught me unconditional love!....and it's not all about monetary things - it's about being tough when you need to be and giving in sometimes too.  It's about providing and sacrificing.....

Did I tell you that when we were in Phoenix (after Zeta did so well with surgery) I missed my boys so much that I called my Daddy on Sunday afternoon and asked if he would bring them to me.....they were all on a plane the next morning! 

......and I think my mom analyzes everything I say.  I've been talking a lot about how Stevie and I have been doing my hair lol.....how I really needed to get in to really get my hair done....Well, my mom had an appointment scheduled for herself this week.  When she found out that Zeta didn't have any doctor appointments scheduled she told me to take her appointment.  To top it off - she sent Daddy by there to pay for my hair before I even got there!

I could write a book about how much my parents have done for me over the years.  I could write another on all they've done just this past year!  They often express regret about not being able to do more as far as taking care of Zeta, but they really don't understand that if it weren't for them WE wouldn't be able to do what we do for Zeta - and believe me that's more than enough!