Wednesday, September 28, 2011

Why him??

Tonight I am writing from a place of frustration and discouragement.  I often avoid my blog when I feel this way...but hey, it is part of the journey and tonight I need to sort through the hurt that I am feeling.   I am so in love with our little boy and that there is the hard part.  His sweet little face, his precious little smiles, the way he calms to my voice and knows I am his mommy.

Today we had yet another appointment downtown at the ortho.  Honestly all these appointments are really beginning to wear on us.  They require a lot of planning, rushing like chickens with our heads cut off,  and they take forever. We have had so many lately and I don't see them slowing down for a while.  Today we went for Eli's second set of cast.  The first set really helped at first, but after about 3 days we really began to see a lot of regression.  Our physical therapist really wanted to get another set on soon so that we didn't lose what had been corrected.

 At his appointment this morning the doctor mentioned wanting to do a procedure to cut/lengthen his tight heel cord. I knew this was very likely as it was very tight.  Then he said he'd like to do it today prior to the casting.  I really didn't know what to say.  I am no expert.  I have been warned about doctors wanting to operate too much and to beware...but it seemed rather non-invasive.  In fact, he said he could do it in the office without anesthesia.  We decided to go ahead and prayed for wisdom as we were making a quick decision. 

We rushed home, fed the girls and rushed back downtown to the hospital.  I couldn't watch and had to walk out and thankfully daddy held Eli's hand.  The good thing is that he didn't cry...the bad news is that he didn't cry. Clearly, he had no feeling in that part of his heel/ankle.  I stood outside the door praying for a scream...and yet praying he wouldn't.  Sometimes this journey still knocks the wind out of me. 

Some days I think if I could just wake up and Eli not have spina would be perfect...almost as if I could live again.   I find myself angry and jealous of people who are living life "seemingly" easily.  People who have happy pregnancies and healthy children.  People who have babies who kick and move their toes.  I have lately felt the urge to walk up to random strangers and tell them how lucky they are that their baby can fan and spread their sweet little toes. 

If I hear one more time that taking folic acid will prevent spina bifida I may just scream!!!  If the genetic center sends me one more letter asking for an interview, our blood samples and offers to pay me for taking my vitamins...I may go overboard.  I...DID...EVERYTHING...RIGHT!  Yes, that is me screaming at the computer.

I often wonder what my life would have been like had I gotten pregnant and had four healthy kids...I cannot imagine.  I know God has and will continue to use our struggles to bring him glory.  I have no doubt that through his disability Eli will bring God glory.  Tonight...I just wish for easy.  I just wish normal.  I just wish it I could take it all away.

Thursday, September 22, 2011

Happy 2nd Birthday to my sweet Eliza Anne

It is hard to believe that our sweet little Eliza Anne is already TWO!  Two years ago tonight Kev, Ella and I ate Mexican and came home to an anxious night before my 8am induction.  Eliza started out a peanut at 5lbs 15oz. and today she weighed a whopping 23 pounds.  I have come to accept that Eliza is just going to be tiny, despite the fact that she is generally a great eater. 

Eliza is the sweetest little thing.  I guess I have already used that word to describe her 3 times, but she is just so sweet.  In fact, had she been our firstborn we'd probably thought we were gifted with excellence in parenting.  She is generally very compliant and obedient.  She is a great sleeper and loves to be in her bed.  She loves to be held and is so snuggly.  She is quiet and super observant.  When she is nervous she plays with her hands and she finds security in sniffing her little pink blankie square.

I love everything about her!  From her thin blond hair to her striking blue eyes.  She tans way better than her mommy ever will despite the fact that she wears 55spf.  Eliza has the cutest giggle and when she gets started she can't stop!  We can't help but laugh when she does.

Eliza loves shoes.  In fact, as soon as her clothes go on she heads to her closet to pick out her shoes.  She has some serious fashion opinions on which shoes she wants to wear each day.  She loves playing with her babies and is constantly filling a purse.  Her favorite thing to do is pushing her babies in her stroller.  Her favorite person is definitely Ella and she has always been a mommy's girl.  She has adjusted pretty good to being a new big sister, and she thinks her daddy gives the best piggyback rides.

Eliza has always been our climber.  She is a quick one!  Thankfully, I think we are ending that stage.  She is a little mischievous, yet is more sneaky about it than her big sis.  She was recently found in the bathroom eating a tube of chapstick.  She had closed the door and was hiding beside the toilet.  She also woke me up the other morning telling me she needed to "pross" (Floss).  I got up to find about 10 feet of dental floss unraveled in the bathroom. 

Eliza is relatively easy to discipline.  She likes to please and has tender feelings. She has reminded us that each child is so different and has to be parented in a different way.  Oh, and she gives looks that can kill...see below!

Eliza, we love you so much!  You bring a sense of calmness and sweetness into our home.  You are such a blessing and we cannot wait to watch you grow throughout this next year.  Happy 2nd Birthday lizze lou!!

Monday, September 19, 2011

2 Months (a week late)

Last week Mr. Eli turned two months old.  My due date with him was Aug. 23rd so technically he should really be about a month or so, but since he was 6 weeks early we have already gotten a full two months to love on him. 

Eli is a wonderful baby.  Last week he started sleeping though the night.  Praise the LORD!!  He is generally sleeping from 9-10 pm until 4:30 or 5ish.  Now if I can just get myself in bed at a decent time, I might finally catch up on some sleep.  I have always stayed up too late, but I am finding that nighttime is the only time I can catch up on things I need to do and the only time I can relax.  Okay...back to Eli.

Eli is growing like a little weed.  My goodness he has some serious cheeks!  It is so strange to me that I am feeding on the same schedule I did with the girls and the same substance (breast milk) and he is growing so much faster!  His weight is in the 75%.  My girls always lingered in the 25% and below (Eliza much below).  I am not sure why he is growing faster...maybe it is a boy thing!  One thing is for sure...he loves him some milk!
At his appointment last week he weighed 9lbs 12 oz. 

Last week we were super busy with appointments.  We went back to see Neuro. and so far Eli's head appears to be growing normally.  It is in the 75%, but so is his weight and so far it is not jumping in percentiles.  His fontanel is still soft and so far he doesn't appear to need a brain shunt.  This of course was one of the main reasons we opted to go through with the fetal surgery, due to the fact that the research showed the surgery decreased the need for one.  We are praying his little head will continue to grow as it should.  He will most likely have an MRI in November, but right now they will continue to just monitor head circumferences. 

We saw ortho last week as well.  This appointment always makes me nervous (well, they really all do).  A month ago when we saw the orthopedist he was very honest and was the first to really inform us that Eli was not functioning as well as he should for the level that his lesion was on his spine.  It was really hard news for me to hear seeing that went through so much in our pregnancy with the hope that he would do even better than expected.   Over the month, I found myself accepting this news, yet as the month went along Kev and I both felt as though Eli had more feeling in his legs than the doctor thought.  Basically, the doctor felt as though he had no feeling below his knees.  We really felt that he had feeling down into his calves at least.   Well, at our appointment this past week the doctor confirmed that he clearly has some feeling in his lower legs.  We were so thankful that it wasn't just us being hopeful. but that the doctor also noticed it too. 

Our ortho is an older man and has been working with kids with spina bifida for a long time.  He said a few times that he didn't understand it, but that Eli clearly had more feeling than he had a month ago.  I made sure to let him know that Eli has had a lot of people praying for his little legs.

Eli also got his first set of casts for his clubbed feet.  All of our doctors have told us that they feel that his feet were clubbed due to his position in the womb (it can also with spina bifida too).  We have been doing lots of stretches, but the doctor decided to go ahead with cast.  I was prepared and ready for this....and I was actually excited to get the process started!  In the past if you would have told me that my 2 month old would be wearing heavy, bulky cast, I would have been devastated, but with the Lord's help I was ready.  The cast immediately made his legs look longer, bigger and in the correct position.  It made my heart happy!

Eli has been a trooper all week.  His has shown us how strong his little legs are when he lifts, lowers and moves his little casted legs.  I know they are heavy for him and yet his is quite determined to move them.  We are so proud of him.   He will get his cast off tomorrow and I am anxious to see what kind of improvements were made in a week.  We won't see the ortho for 3 more weeks and he will most likely go through a series of casting then.  He will also have x-rays on his hips then too.

We also have been seeing an early interventionist once a month and a physical therapist every week.  I am so thankful because we love them both.  The E.I. comes to our home and pretty much plays with Eli.  She is so sweet and loving with him.  She gives us homework and ideas of things we can do to encourage growth and development.  It is so different because with our girls we just let them develop naturally.  I am trying to not become paranoid with all the milestones and etc. and just enjoy him as he is.  So far, he seems to be doing great!

Our physical therapist is awesome.  I have been told by several people that she is the BEST and many have asked how we got picked up by her.  (If you read this...thank you Amy!)  I am so thankful that we did and I can already tell that she will be a special person in Eli's life.  She praised him over and over and told him how great he was! 

And one final thing...little Eli has started giving us the absolute cutest smiles ever.  They seriously melt my heart and almost make me cry! So thankful for my little guy!

Sunday, September 11, 2011

Sisters and brother

Two big sisters who are loved so very much.  Bringing us daily laughter and joy....they fill our home with bows and bloomers, purses and babies.   They love each other fiercely and fight as sisters do.  They cry and comfort when the other is punished, and melt mommy's heart as they hold hands sweetly in the back seat of the van.  They have their own "play" that often leaves us wondering.  They love to match, most days.... and Ella often confesses that Eliza is her favorite friend.  Eliza is content letting Ella take the lead and often does whatever Ella tells her to do (not always the best idea).  These two sweet girls redeemed our loss and have filled our hearts with thankfulness.   They remind me of health, happiness and normalcy.

Little new and so young.  Each day we are learning you more and loving you more.  You are teaching us to look at life from an eternal perspective.  You are teaching us that it is okay to be different...okay to have challenges.   You have rocked our little world and all I know is that God must have some awesome plan for you.  Every little milestone...even as small as tracking a toy or responding to a sound is a new celebration.  We will walk through the challenges ahead beside you, cheering you on and upholding you with our love.  Little loved, so cherished, so very sweet.

Wednesday, September 7, 2011

We Ask...

Ella kissing Eli's little foot

Everynight at bedtime Ella prays for Eli.  She won't go to bed without praying for him (which quite possibly could be a stall tactic..but it always works none the less).  We have been slow to share much with her about spina bifida and Eli's disability.  Pretty much all we have said is that we needed to pray for Eli's little legs that they will grow strong.  She is a smartie and always picks up on more than I think she is.  Everynight she says, "Thank you Lord for this day.  We ask for Eli's little legs to grow strong so he can use a walker one day."  She has also started adding in a new line that goes something like this, "Lord you are all our hope."  Then she bee-bops down the hall and jumps into bed.  I cannot tell you how much her little prayers, bursting with childlike faith, bless and encourage her mommy's heart.

Monday, September 5, 2011

A sneek peek!

A friend of ours took some pictures of Eli and our family a few weeks ago.  I thought I'd share just a few.