Happenings...this and that

We have had a fun and busy summer.  We began the summer beaching it as much as we could.  It is a great way to wear out two busy girls and a little boy!  Somewhere around mid July I began to feel beached out.  We haven't been back!  Somewhere around January I will probably regret that!

 We have stayed very busy this summer just getting to all of Eli's therapies.  Most weeks we have had at least 3.  It does dictate a lot of what we do each day, but I am so thankful for great therapists. 

Right now PT has gotten really hard for Eli.  He has decided that standing and trying to walk is for the birds and that crawling is so much easier.  PT has turned into a crying/screaming fest most days.  We have upped it two twice a week in hopes of getting past this soon.  I love our PT.  Everyone tells me that she is the best pediatric PT in the area and I absolutely agree.  She is not afraid to push Eli and mommy.  Even on days when it is rough I trust her knowledge and experience. 

Eli is wanting to pull to stand.  He has recently been trying, but it is hard.  He is now wearing his AFO's most of the time.  He has to have them on to stand.  I will be glad when it cools down and his little feet won't get so hot.  There are sooooo many challenges ahead, but with the Lord's help we will get through them.

I am beginning our journey as a home school family.  The former teacher in me is excited.  The mommy in me is a bit terrified.  Ella will be 5 in the beginning of October and she is really ready for more "school."  Eliza will be 3 at the end of September and I am going to be doing a letter of the week curriculum with her.  It will just be easier if they are both busy during that time.

I have been working like crazy turning out playroom into more of a school room.  I have spent lots of late nights piddling through curriculum's and lesson planning.  The teacher in me has a hard time writing lesson plans without a state standard correlated.  I keep reminding myself that Principal dad will not be checking my lessons each week.  I am sure I will get things more simplified as we get things going.

I really think having more structure in our morning will be good for both of the girls.  Thankfully, Eli takes a good morning nap so that should give us time to get most of our work done.  The girls will also be attending Preschool at our church two mornings a week.  I can't wait to be able to grocery shop with only one child (and one who doesn't beg for anything yet)!   I also try to use this time for Eli's therapies and appointments. 

Kev has just began his FINAL semester of seminary!  He is set to graduate in December with his Master's of Divinity with an emphasis on Pastoral ministry.  I am so proud of him and we are both counting down the days until he will done. 

We are also repainting most of the interior of our house.  I have been trying to pick a paint color for almost three weeks now.  The Sherwin Williams man surely thinks I am a crazy lady by now.  10 paint samples (some were shared from a friend) and I still am confused.  I know what I like, but we are trying to just go neutral for resale purposes.  We hope to sale before we have to paint again...who knows when that will be though!

So that is what has been going on while I have been avoiding the blog. 

He's ONE!!

Last week my little baby turned one.  I have said more than once that this has felt like both the longest year and yet the shortest year ever!  I have been trying to think up the words to summarize Eli's first year and yet the words seem too deep down to draw up! 

All I know is that God has never forsaken us and has given us grace for each step of the journey this far.  It hasn't been fair, easy, or normal, but each time I see that sweet little smile I know it is worth every tear. 

Eli Matthew,
              How did you go from that itty bitty preemie to a big boy in just one year?  I will never ever forget the my first glimpse of you.  I was scared to death at the challenges that were ahead.  You have been the sweetest baby ever.  You are so happy and content.  You have gone through a lot this year from casts, MRI's, lots of bracing and lots of therapy.  You have met every challenge with a smile and I love that about you.  You are such a special part of our family.  Your sisters are still crazy about you and so is your mom and dad. 
                 I know this next year is going to be hard. We have lots of big boy milestones to work on and once again mommy is scared about what is ahead. I want you and the rest of the world to know that no matter what you achieve in this life you are greatly loved. Whether you ever learn to pull to stand, or if you ever take steps, or if you ever achieve what comes so easily and naturally for all of your friends, you are loved completely just as you are. We will love you if you are a wheeler or a walker or both.  We will love you with extra gear, extra appointments and extra challenges.  We will love you through the challenges and continue to trust Jesus to guide our path. We know God has good plans for you and we are thankful He chose us to have a front seat on this journey! Love Always,
                                            Mommmy

                                            

Eli had a whale party!

Big sis

Little sis

Can you tell that the sisters were not happy about taking a family picture?

Daddy's little look-a-like!

"Hey mom, you sure this is okay?"

Eliza thought he needed some help!

YUM!

He loved it!  I was not a bit surprised!  I finally took it away because I was afraid he'd eat it all!

Thankful for all his new big boy toys!

           

11 Months

This post is late and before I know it our little guy is going to be ONE!  I cannot believe how fast this year has gone.  In some aspects it feels like the longest year ever and yet, it has gone so fast!  I know that makes no sense at all!  Eli is now 11 1/2 months and his adjusted age is 10 months. 
At his orthopedic appointment last week he weighed 19 lbs 13 oz and was about 28 inches.

I love my happy boy!

This has been a BIG month for Eli!  This past month he started sitting in the side sitting position and also sitting with his legs bent at the knee.  We had been working on this in therapy for MONTHS!  I really began to doubt that he would ever be able to do this on his own.  Everytime we would bend those sweet little legs, they would come straight back out!  One day I was over at my parents house and Eli was sitting on the floor and my mom and I started noticing him bending his knees while sitting.  We both looked at each other and were quite amazed.  Since then he has been bending those little legs like crazy.

Being able to bend his legs better helped him to make transitions easier from sitting to on all fours.  He rocked, we practiced getting a motor plan, we did it a lot....for weeks.  I doubted and prayed and wondered.  I asked therapists and they said they weren't sure.  I knew he was close, yet I didn't know if we would get there on all fours without reverting to the army crawl.  And then one morning I was across the room and he saw my coke zero can and HE CRAWLED ALL THE WAY TO MY CAN!!  (So much for enticing toys...it is always the real things that they like)!  Since that day he is getting faster and faster.  He is also pulling up into the kneeling postiton.   Nothing is better than being in the bathroom and having a sweet little boy coming to find me.  I am very proud of him!

Is it just me or does he look about Five in this picture?

He loves being able to chase after his sisters...and get into their toys!!

He got his first two teeth this past month and has started making more sounds (finally!)  He is saying mama, dada, baba...and we think we've heard a papa too.  He is beginning to make lots of other babbling sounds and we love hearing his little voice.  We are most likely adding speech therapy onto our therapy schedule in the weeks to come.  He has been a little behind verbally and our OT and PT have encouraged it.  We just want to make sure we are doing everything to keep him as much on track as we can.

Eli is also eating table food.  He LOVES it!  I am not surprised!  The other night I am pretty sure he ate more than both of his sisters. 

Next Friday Eli has his big neuro appointment.  It is a big appointment in which our Neuro will decide if he thinks he needs a shunt.  Last appointment he kinda gave us a two month waiting period to see if that little knoggin would slow down.  Well, unfortunately it has continued to grow.  I am still praying for wisdom.  We have gotten a second opinion and are seeking another. We want to know all of our options and make the best choice for Eli.  Of course not needing to do anything would be such a blessing!   Nothing would make me happier than for that little head to slow down and begin to absorb the extra axial fluid that is there.  We would covet your prayers for Eli and this important appointment.

I don't know what Eli's future is going to hold, but I am so proud of all that he has already accomplished.  He is such a fun and easy going little guy.  He seems to love life and love people.  He is a little ray of sunshine and I know God will continued to be glorified in his life.  We love him so.
Now for planning another first birthday!

Catch Up

1.  I have been avoiding my blog.  Life has been busy, busy and it takes more brain action than I have most days to sit down and write!

2.  Speaking of brain cells, some days I wonder if I have any left.  The other day I was trying to write February, and for the life of me I couldn't spell it.  Was is (Febuary or February)??  I knew that I knew how to spell it, or at least I did at one time, but I couldn't for the life of me remember.  I think this is why I go to Target with a list in hand and still forget to pick up that one needed item. 

3.  I used to not mind a quick trip to Target.  In fact, if I forgot something, no biggie...I could always pick it up later.  Nowadays, a trip to Target or any store to be honest, requires energy and patience of the supernatural kind.

4.  Eli is now 11 months.  I must admit that I feel a bit cheated.  In my mind, he shouldn't be one until the end of August, yet due to his early arrival it is almost here.  I feel like I should get those extra six weeks back!

5.  I was looking at some of his tiny baby pictures the other day and I'd give anything to go back now and hold that little sweetie again.  I was so, so scared that I feel like I missed out on a lot of it. I wish I could get a do over now, knowing how much I'd love that little guy after a year. 

6.  We had a garage sale a few weeks ago and I sold my baby stuff.  I had a little breakdown night before as I got it all together.  Each little outfit, burp rag, etc. held a specific memory to me.  They were just items to others, but to me they were so special.  Yes, I do believe I have attachment issues.  I let it go.  It feels good...I think. 

7. We have been going to the beach at least once a week.  Since we didn't get to go last summer due to our situation, I have been trying my best to enjoy it this summer.  It is so much work to get us all there, back home, and cleaned up, but it is a great way to wear some busy bodies out!

8.  One year ago today I was sitting in a hospital room that I'd be stuck in for the next 30 days.  Kev was laying in the bed beside me.  He had been in a major head on collision after leaving the hospital to go home to take a shower and see our girls.  There was a fatality involved but thankfully he walked away very bruised, cut, swollen and sore.  I had never ever in my life been so thankful to see him when he walked back into my hospital room that evening after spending the afternoon and evening down in the trauma center.  What a day!

9.  And one final catch up...Our baby can CRAWL!!  Like, on all fours moving legs crawl.  I am very proud of him. A few months ago I wondered if we would ever get here.  It has been such a slow progression and lots of work.  Now on to bigger and harder things, like standing! 

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....