This Journey

This journey of having a special needs child is hard.  Some days I feel empowered, called, and chosen to be the best mommy I can to our sweet little man.  Some days it feels suffocating and sad.  Having there be something medically wrong (not just talking a cold or fever) has been my worst fear since the day we said goodbye to our first baby boy.  When Ella was a baby...I really feared losing her.  Every fever, cold, etc. I just knew it was going to be something terrible. Little by little I learned to relax and trust.  Even though my head knew that she would get sick, it took a while for my heart to get there. 

Spina bifida affects lots of different body parts.  Each month my calender has at least one BIG appointment that could be a game changer.  I see those days marked in my planner and my stomach does a flop. 

I know God is using this in my life to make me more like him...it is often not an easy or pretty process. The letting go of my plans, my wants, my expectations...dying to them and allowing Christ to be glorified is life.  The having a heavenly perspective...knowing that this life is but a vapor, is a daily discipline.  The trusting in God's sovereignty...even when it hurts and hurts is faith. 

I daily see my great need for the Lord.

10 Months

Our sweet little guy is now 10 months old.  I cannot believe it!  His adjusted age is 8 1/2 months.  Seeing that my last post was about him turning 9 months, it shows that this has been a super busy month. 

This past month Eli had all of his regular therapies with the addition of the Spina Bifida Clinic day and also his first sedated MRI. 

This month brought with it some new skills as well.  Little man can roll and get on all fours as quick as we can blink.  He is doing great rocking on his knees on command.  His is beginning to move his arms some in the crawling motion.  Our PT said a few months ago that crawling on all fours would be very challenging for him and we are hoping to surprise her soon.  I am hoping that he will be crawling well by his first birthday....time will tell.

He can really get around and as you can see will no longer play on his blanket.  He likes to get tangled in it instead.  He learned this month how to clap on command and give hi fives.  I guess the biggest accomplishment was that he figured out after lots of practicing how to transfer from his tummy to sitting and from sitting back to all fours.  It may look a little different as he keeps his legs straight for support, but he does it!!

He is such a sweet boy.  I call him our little bear because he is so sweet and cuddly.  He is just a happy and easy going little guy.

Eli got his first little hair cut by mommy this month.  We are still trying to figure out this boy hair-do thing. 

He loves his big sisters and they remain crazy over him.  (Party in Eliza's crib...and yes she is still in a crib and I have no plans of rocking that boat anytime soon.)

Eli's MRI revealed that his ventricles are stable, which is good, but that he continues to have more fluid on the outside of his brain.  The neurosurgeon feels that he may be developing communicating hydro and has given us two months to wait and see if his body will absorb the extra fluid.  He said if not we will need to do a shunt.  My heart was very sad over this yet, we will continue to pray, plead, beg and trust God no matter what happens.  I know it wouldn't be the end of the world, yet I really hope we don't have to walk down that road.

We are currently seeking a second opinion from the neurosurgeon at Vanderbilt who preformed his fetal surgery.  We are wanting to get all the info. we can in order to make the best decision for Eli.

Oh yea, Destin makes a mess...in case you didn't know!

Have a great day!  Eli's gotta get back to his leg work-out!!

9 months

Our little boy is now a little over 9 months.  His adjusted age is 7 1/2 months and yes subtracting that month and a half makes me feel better!  I am having a hard time realizing that his first year is almost over.  The first few months were such a blur of post-partum yuck, fear of the unknown and just trying to survive, that it seems impossible to be at 9 months already.

Looking like a big boy!

At his 9 month appt. he weighed in at 17lbs. 4oz.  (Those chunky cheeks can be deceiving!!)  He was 26 3/4in.  He is growing, but is still on the shorter and smaller side.  His head circumference has gone from the 80% to the 50%!  Now that is  a huge...HUGE..praise!

Eli has picked up some new tricks this month of which we are very proud of.  He learned to wave the cutest little pudgy hand wave.  The first time he did it all four of us squealed with excitement.  So much so that we caused Eli to be a bit frightened.  It didn't take long and he was a waving machine!  He also learned how to do, "how big is Eli...so big!"  It is really so cute and he loves to do it over and over.  Oh, and he is really good at clapping his feet together!  Go figure!!  We are still working on clapping our hands together.

How big is Eli...so big!

This past month Eli has become much more content on his tummy...thank goodness!   He is quite the rolling machine!  He likes playing with his toys and watching his big sisters.  We are working so so hard on learning to army crawl and then hopefully crawl.   He has just learned how to get up his knees and rock some!  I am so so proud of him!  He has started pivoting some and can scoot backwards.  He can also scoot on his bottom pretty far. Thankfully, I know these are beginning steps to crawling.  It is just hard and slow progress! We are also working on standing with braces.  We are using some splints to isolate the glutes to "try" to make them stronger. 

What are we doing now, Mom?

Hey, I might can get outside this door now!

Working

So

HARD!

Eli has begun babbling more.  The only recognizable sounds are baba and wawa. I am so ready to hear mama or dada.  He's been a very quiet baby so far, so we are glad to hear some new sounds.

We have added in OT each week along with our weekly PT.  Some weeks we are in appointment overload.  Every week we have at least two appointments.  That is if no one is sick or there aren't any extras.  This week we have OT, PT, E.I. and Spina Bifida Clinic.  I feel like that is pretty much what I do some weeks...appointments.  I am so thankful that we love all our doctors and therapist!  

Last week Kevin came to PT with us.  I knew he was going to ask the questions that my mommy heart is far to afraid to ask.  The, do you think he will and the what should we expect kind of questions.  Of course, no one will or can say at this point what Eli is capable of, but I left that appointment not feeling as certain.  Some days I wish I could just get a peek into the next five years and just know...if he will be a walker or not!  Maybe if I knew I could find some rest! 

Oh sweet feet!

Peek-a-boo!

Eli loves to laugh at Ella!

I spend most of my days working with Eli and taking care of the girls of course.  When I say working with him I mean down on the floor playing, practicing standing, practicing sitting, e-stim therapy 3x a day and everything else we are supposed to be working on.  I often feel like the burden of him gaining strength and progressing is dependant upon me working with him. Some days the weight of this is really hard.  Most days, I feel like there are not near enough hours in my day for everything.

I knew these months and milestones would be long and hard...and they are proving to be.  And just because this mama needs to be reminded tonight of how far we have come....

Our Easter

We had a great Easter season.  It was filled with several egg hunts, way too much candy, but most importantly remembering the sacrifice that Christ made for us.  I tried my best to keep everything easy and low stress.  Eliza hid her brand new Easter sandals that were purchased the day before and were a little splurge for me.  Normally she wears all of Ella's hand-me-downs, but Ella's old sandals were very worn.  We have looked everywhere!!!  She appears to have no clue as to where she put them and neither do I.  Hopefully we will find them soon.  Despite all the "shoe hunting" on Easter morning we did manage to snap a few pictures and make it to church on time.  Now that my friend is an Easter miracle. 

Sunday School Egg Hunt

Ella's basket was too small, so Eli was glad to help out!

He is risen!

Eliza is watching a butterfly that the girls found it the yard.  I didn'tt have the heart to tell them that it was dead.

Little man!

Daddy and his peeps!

Happy Easter!

One year post diagnosis

I have literally tried to write this post 5 times.  I have 5 different drafts saved and can't for the life of me seem to get my thoughts expressed.  I want to remember how far the Lord has brought us since March of 2011. 

When we received Eli's diagnosis of Spina Bifida at 16 weeks into my fourth pregnancy, it was my worst fear in life...happening.  After losing our first baby in 2006, due to a rare unrelated birth defect, the thought of something happening to another one of my babies was honestly my very worst fear.  Although I feared this, I never in a bazillion years thought something else would go wrong.  Especially since I am by nature a rule-follower and always tried to do all I could to ensure a healthy baby.  Even to the point of being a little extra crazy about it. 

And although the pregnancy was horrific: fetal surgery at 22 weeks, bedrest, hospitalization for the final 4 weeks, and etc., etc.  I can honestly say that it was all worth it.

God has and is doing so much in my life and a lot of it has to do with Eli.  I have never prayed more than I have this past year.  Not just begging God to bring healing to his little body, but also praising God for each little change, growth and normalcy that we experience.  My heart is so filled with praise for all the little and huge prayers he has answered.  My faith has grown through the difficult days, seeing God answer and bless us.  I am learning to live each day with expectation that God is going to do great things.  I watch expectantly for little toes to move, for legs to feel stronger, for Eli to do something he couldn't days before.  My heart is so filled with love for Eli.  Who would have thought I would love having a little boy so much!   I do!  I even love shopping for him.

Our family has CHANGED...for the better and it is because of Eli.  I remember the day Eli was diagnosed and through a bunch of sobs and tears I asked what would be the best and worse case scenario for Spina Bifida.  I had no clue what it really meant, what to even expect and I really wanted to know it I was going to lose this baby too.  I will never forget the answer.  The reply was that the best case scenario for our family and our girls would probably be if this baby didn't make it. 

I know the person who said this was saying it because she herself hurt that we once again were facing such a diagnosis.  In her mind, she knew some of the struggles ahead and felt it might be too hard...although she clearly knew from our past history that we would never terminate a pregnancy... No Matter What!!  We have walked that road and very passionately believe that God is the giver of life and only God can take life. 

She said the statement knowing the struggle, but what she didn't know was the help, strength, support of the Lord.  She didn't know the power of a family lovingly committed to do WHATEVER it takes.  She didn't realize the power of a church, friends and family who pray.  She didn't know that God can take the most terrible situations in this yucky life and bring such good from them. 

She also didn't know that two little sisters would be CRAZY over their baby brother.  She didn't know that they would grow up going to hospitals and clinics and would grow to have a heart for those who are different.  She didn't know that at four and two they would pray fervently for their brother and for other kids that they see.  (They have prayed each night for a little boy they saw two months ago at the ortho doctor.  Every night at bedtime Eliza says, "I pray the little boy hurt his leg."  Then she says, "Mommy what happened that boy?"  We are working hard to learn to not give stares and to wait and ask such questions about people who are different when we get back in the van.)  She didn't know that having a brother with special needs wouldn't hinder their little lives but rather enhance it drastically.


Ahhh, one year later.  So thankful to be here.  Despite all the hurdles behind us and the ones that are looming ahead, we are very blessed.

Baby Clothes

Yesterday I took a ton of Eli's little, baby boy clothes to Once Upon a Child.  It just about killed me.  I almost felt the need to explain how special each little outfit was to me and just how tiny he once was, but I refrained.  I almost ran back out the door with my containers, and then I thought about going back and repurchasing the clothes.  Kev keeps reminding me that they are just clothes, but they are sentimental to me.  I know it is time to let go of the old and make room for the new.  The baby days sure do go by fast! 

8 months

On Monday our little man turned 8 months.  His adjusted age is 6 1/2 months.  It is hard to believe that it has already been 8 months since that big day in the midst of a long hospital stay.  Last week we also hit the one year mark from when we recieved Eli's diagnosis with Spina Bifida.  It is surely a day that will be forever etched in my mind. 

First, a little Eli update.  At 8 months Eli is now sitting up pretty well on his own.  In PT this week we are working on side sitting and sitting with his legs bent.  When he sits he keeps his legs straight out and so we are narrowing his base to make it a little harder and help him to sit better.  His PT has been upped to every week now since he is getting older and to the point where he will need it even more.  We have also added in OT too and should have that evaluation soon. 

In the last week or so his little legs have gotten stronger and a little better at bearing weight.  I noticed it first on my own when working with him one morning.  I stood him up as I always do (with lots of support and he planted his little legs and locked his knees.  Our PT felt that he was stronger too and so I knew it just wasn't my wishful thinking.  We have a long, long way to go but I am thankful for any progress.  This is truly and answer to prayer because I must ask the Lord 100 times a day to strengthen his legs. 

He also got his first pair of teeny, tiny afo's this month.  They keep his right ankle from rolling and definitely give him extra support in his lower legs. This is the beginning of a lifetime of him wearing them.  They also make his feet and legs pretty sweaty.  I hate that he will be so hot in them in the summer and I sure wish his little feet could wear crocs and sandals.  It is just part of life that we will all adjust to.

I have continued to monitor his head circumference in between neuro appointments and the rate of growth has drastically slowed down since January.  We praise the Lord for this.  Although hydrocephalus can develop at any time, the longer we can go without it the better the chance is that he won't develop it.

Little man is not a big fan of baby food.  He was doing good until he got RSV back in February and that was a big set-back.  We are finally making progress, but he shakes his head NO everytime I initially try to get him a bite.  The good news is that he is no longer crying and is now moving it around in his mouth and swallowing...so that is good.  He does love his milk and when I pump he does good at holding his own bottle.

Uh, mama are you just gonna take pictures or help me!

My two best boys!!

He continues to be such a sweet and loving little boy.  He loves to be held and snuggled and is a very happy baby.  He loves to watch is sisters and can now wave.  We love him so and pray that he will be all that God wants him to be.

I have tried to write a post about being 1 year post his diagnosis about 4 times, but still can't find the words to sum up my feelings.  Going to try again another day.