Faith's AFO Update

Sometime last month we made the trek down to see Faith's orthotist.  I love the clinic, but the commute is obnoxious and so very far :(  I had been putting off her appointment and before I knew it, a few months had passed...mom fail.

Poor Faith had really regressed in her gait movement.  She even became much worse than she was before her initial fitting of braces.  So sad :(
 
Thankfully we have the best pediatric orthotist around (hence the commute) and she has already helped Faith greatly!!!  As you can tell, Faith wasn't exactly happy about this appointment at first.  It also didn't help that the movie the technician selected to play while Faith had her fitting was Shrek 3, and Faith doesn't like anything that isn't all butterflies and rainbows!!  Seriously, any sort of anything unhappy makes her run to her room with her beloved blankie.
Lance jokes she's going to be a liberal artist. ha!!!!!!!

She actually did very well with her fitting.  I have always taken pictures of all the girls appointments so better prepare them and show them what to expect and where we were going....since we are frequently at an appointment.  So reminding her what was going to happen helps calm her :)

Minutes after her AFO's came in and she wore them, she would not take them off.  She kept telling us her special shoes help her!!!  SUCH a blessing!!!!!!  She has had them now for several weeks and has already make so much improvement.  We also have a great physical and occupational therapist, a CP specialist and a neuro-development doctor who are very helpful with us!!

We are also thankful that her Kindergarten school will be able to provide extra help with her movement/gait and cerebral palsy needs in addition to her speech/language needs!!

I pray every day the Lord will help me teach her about HIS greatness and comfort.  I hate seeing her insecurities rise at times....but it's so amazing to teach her (them) about the work HE did in their life as babies and will continue as the years go on!!

Catching Up!!

I've been telling my husband, almost daily, how I am SO behind in updating and there is really so much to share.  I've missed this time, "me time", to sit and write my thoughts and share our joys in our journey through this broken world.

Grace and Faith are amazing!!  Grace wakes up every single morning and stands next to me to see if she is "as big as me" yet...she is anxiously waiting for day to "be like mommy".  My heart can barely take her cuteness.  She has become such a little girl, and more precious than ever!!  Faith is hilarious.  She is picking up on so much of Grace's vocabulary and we die laughing sometimes of some random things she says :)  She is an art/writing master.  This girl writes a book nearly every single day and draws far better than me at 31.  She is completely happy staying "mommy and daddy's baby" :-)

We just recently spent a family day at the ocean.  My husband took us to these amazing places and trails before we went to visit our dear friends new house!!

Isn't this gorgeous!!!

I love my little family to pieces!!!!!!

I'll be sharing more as I have to goal to get completely caught up, and I've given myself a deadline :)  I love having this time and place to journal our path and looking back at all the GREAT work the Lord has done in our family.

Pure of Heart

I remember when our girls were born.....as they spent time in the NICU for the 5 months following, all our life consisted of was living at the hospital.  Every single day.  And I remember one day locking myself in the bathroom because I couldn't stop crying.  I hated so many things about that time (but also such a blessing!!) but I really hated how lonely I was.  Everyone I knew still had a life to tend to, they were busy moving on with it, and we were stuck there.  At the hospital. 
After our girls came home we were isolated in our house for a long time.  I couldn't do many things with them.  They were both on oxygen, home oximeters, meds around the clock, and my entire life revolved around their medical and newborn needs.

During that time, looking back, I could have easily went through a "hard time" or struggled...but I didn't.  Sure I went through some time of understanding my new role as a full time mom and wife as I previously was very career driven and worked many hours.  But I believe the Lord really kept my heart and mind from wondering too far away from Him.

I find now, as our girls are getting older (how is is possible they are 5 already???) that I have to have be very aware of where my mind wonders to.  I have to be careful not to feel discouraged when our normal isn't the typical.  About schooling, or their medical stuff, am I a good enough mom, wife or friend, do I show reflect Jesus in my actions; even about our infertility struggles.  My heart aches that nearly every one of my friends has a new baby or are about too, and it's not an option for us.  But as much as it aches I also believe God has closed that door for us....at least at this point in life.  But my heart wonders, and I have to be on guard and prepared to redirect my flesh back to Him....

My desire for this year has been to have a pure heart.  I want to learn to control my mind SO much that my only thoughts are ones that bring glory to God.
Pure - Free of contamination or impurities; ritually clean
I often tell my girls that their attitude is a reflection of their heart and as much as I teach them that understanding, God is teaching me about my own heart.
My heart is so ugly.  And I've been spending every day in prayer that God would conform my heart into something more pleasing to Him.
I want my actions and my words to reflect the same as God who has loved me endlessly.

I fail, almost minute after minute, but I try again, minute after minute.

In the morning, when I rise
In the morning, when I rise
In the morning, when I rise
Give me Jesus

Give me Jesus
Give me Jesus
You can have all this world
Just give me Jesus

There is this song, the Lord placed on my heart a few months ago that gave me COMPLETE healing in a lot of pain I had been holding onto.  Hurt, that should have been forgiven as HE continues to forgive me, minute after minute.  I've heard this song over and over again before, but never, did it affect me like it did this one day, a few months back.  I heard it, and I instantly broke into tears, sobbing, almost shaking and the song was (IS) a constant on my heart, and in my mind for weeks.

When I am alone
When I am alone
Oh, when I am alone
Give me Jesus

Give me Jesus
Give me Jesus
You can have all this world
Just give me Jesus

I made a commitment then, to keep my heart and mind on Jesus.  Even when I'm struggling, I'm hurting, or longing to know how to navigate through the medical system of my girls' life, my minds starts with Jesus.  I made a commitment to sing to Him when I feel alone, or lost, as I do on occasion.  But I begin with Him.  I made a commitment to surrender my heart and my thoughts to Him every single day.

When I come to die
When I come to die
Oh, when I come to die
Give me Jesus

Give me Jesus
Give me Jesus
You can have all this world
Just give me Jesus

This song, the one I've heard so many times before, became part of my every day routine.  Not a day passes that I don't sing it, or have it playing on my PC, or in the car, or on my ipod.  Grace knows every single word because it's constantly on repeat.  Not only does it remind me Jesus has everything in this world taken care of and all I need to do is be like Him, but it also reminds me how much I NEED him to be a part of my day to day, minute to minute life. 

This song, literally, changed my life.  My heart.  My mind.  And my attitude.  I still struggle in my flesh, but it's less often now, and when I do, the Lord LITERALLY and almost instantly puts this song on my heart.  I fully believe the Lord delivered this song in the very second I needed to actually hear it.

Just Give me Jesus!!

School District Update - Kindergarten Plans!

As you know, we have been negotiating placement for Grace and Faith for their Kindergarten year in the fall.  Let me first say, this has not been an enjoyable experience for us....in the least.  It isn't so much that any one thing has limited us, rather, a combination of many obstacles which ultimately come down to school funding issues. 

I last updated that we had toured a deaf/hard of hearing program in a nearby town/district that we might be interested in for Faith.  After touring, meeting the teacher and staff, and seeing a glimpse of what the class looks like, we felt led to take the next step.  The teacher is AMAZING.  That kind of teacher you want to be friends with, who has such a passion and heart for kids learning to function in a "hearing society".  We instantly loved her.  She took time out in the middle of her day, to sit with us for over an hour, answer our questions, let us see and be in her classroom observing and allowed us to see the teacher/student interaction for a bit.
Since then, I've emailed her a few times and she has been THE sweetest in her responses and helping us be informed :)

Immediately following the tour we met with our districts audiologist who has been wonderful in working with our team to get things communicated and 'dealt with'.  She set up another IEP meeting with our districts Special Needs Director and the rest of our team.  After Lance & I all our options and the very specific needs of Grace & Faith, we decided we would try the deaf/hard of hearing program, if the team would agree.  Because Faith doesn't just have a profound hearing loss, but ANSD, speech apraxia and cochlear implant, it is SOOO important to us she gets the very best support team we can get her.  We have educated and equipped ourselves, and I'm just grateful for knowing there is a whole class/team of teachers devoted to kids with hearing loss.  Especially when Faith is significantly delayed...still.

The biggest hiccup we have is for a long time was keeping our girls in the same district.  Our team knew they had to release Faith because they cannot meet her needs here.  However, they were fighting us a bit on releasing Grace as well.  It just simply wasn't (and isn't) an option to put our girls in separate school districts.  Going into our meeting Lance and I prayed (and honestly, I was sick over it) the Lord would direct us according to His plan.  I get so nervous because it doesn't come natural to me to be assertive....and often our IEP meetings aren't smooth.

Once we walked into the meeting our special needs director said she had already been in contact with the d/hoh program and the district and they have all agreed to accept Grace and Faith into the new district!!!!  The plan is Faith will go to the deaf/hard of hearing program and Grace will be mainstreamed with vision support services.  :)  yay!!

All we know is the Lord is at work!!  This new plan may not work out....He may have other plans for us He hasn't revealed yet, but for now, this is where we are led.  I am sooo thankful to have somewhat of an idea of whats going to happen in the fall.

There have still been a few small hiccups these past few weeks, but we are just taking one step at a time and allowing God to reveal Himself and HIS plan to us.   Thankful I can let go of my fears, and trust Him to provide, and know He is with me (us) the whole way.....the whole time!!!!

Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us, looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God.
Hebrews 12:1-2

Fever & Fire.

Faith is still fevered :(  Not sure what is going on with her....I thought she was breaking it this am as she was looking a little better and only temping 99.8, but then spiked back up to 103.3 this afternoon :(  Poor girl keeps saying "I'm so cold" and "I'm so sleepy".
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Grace and Faith's preschool has been talking a lot about fire safety.  They've had this lady come in from the fire department who has a desire to teach preschoolers the importance of fire safety.  One of the days the firetruck stopped by with a bunch of fire men and woman in their uniforms so kids would see that although firemen/woman looked scary..they were here to help!! :)

The fireman came in to the classroom and sat with all the kids...Grace wouldn't stop climbing in his lap...or touching him.  I was dying of this girl.  She reminds me so much of her grammy!! :)

Then they all got to go outside and sit in the firetruck.  Such fun!!

Here is the class picture with the firetruck!!  I love our preschool!!!!!!!!