Friday, April 18, 2014

Life as we know it right now

I feel like it's been forever since I've taken the time to open my laptop, let alone sit down and write a blog post.

Aside from a few pictures posted to facebook from my iphone, our family has seemed to have fallen off the grid of cyber space.

This was only partly intentional, I've been really surprised at how easy it has been for me to cut facebook and the internet out of my daily routine.

Truth be told though, I just don't have a lot of extra room in my life for all of the mind clutter that often comes with facebook, pinterest, and all the other things that I can so easily get distracted by on the internet.

As much as I LOVE blogging, God has been making it clear that this season of life that we're in right now has got to be focused on "us".

I know this season will pass and hopefully I'll be able to get back into writing and blogging, but right now, writing is taking a back burner to actual "living".

Soooooo what does life look like for us right now??

It's very focused.

Very centered on family and on the things that are going to benefit our family in the long run.

This past fall, Ryan and I spent countless hours praying, researching, and continually searching the internet for any houses for sale that may be able to meet the needs of our family.

We decided that building a home would be our best option so we started talking to builders and planned on beginning the process this Spring.

Then one random day Ryan and I both felt God's consuming peace about staying in our apartment for another year. It seemed God was saying if we did choose to build, He would be faithful to see us through, but that there is an even bigger blessing for us if we wait on His timing.

I tell you all of this so you can all have a better understanding of the season we're in right now.

It's a hard season... We're trying to make life work for us in a small two bedroom apartment on the third floor with no elevator all while working like crazy to prepare to either buy or build a house next year.

IT'S ABSOLUTE CRAZINESS PEOPLE!!

For me to take my children on a walk it requires me strapping Landon onto my back, putting Ivan into his umbrella stroller, and carrying him in his stroller down three flights of stairs.

But somehow God gives me the strength (physical, emotional, mental, and spiritual) everyday. Of course there are days when I don't cling to the Lords strength, those days are not pretty, but even on my worst days God is so faithful.

Ryan and I would not trade this life for anything.

Even in this extremely busy, crazy, season of life we are continually blown away by the joy we receive from the two little miracles that demand absolutely everything of us.

Big News!!!


 A new job

Last month I began working at the local Dunn brothers. What I thought would be such a hard change and sacrifice for our family is proving to be a huge blessing. It has been really good for me to get out of the house a couple nights a week, Ryan is enjoying the extra one on one time with the boys he gets at bedtimes, and obviously the added income has been extremely nice as well, as we're saving every extra penny for a future down payment.

A TWO year old!!

A couple weeks ago we celebrated our baby turning a year older!!

How did this tiny, fragile baby...

 


Turn into this strong, confident, stubborn little boy...


It happened in the blink of an eye, let me tell you.

Even though it's hard for this mama to process the fact that my baby is growing up, I wouldn't trade the ride for anything. 

Everyone who knows Landon is just amazed that so much personality can reside in one little boy. 

He is hilarious and oh SO sweet!

He is obsessed with planes, cars, and trains. I can't get him to sit still long enough to eat more than a couple bites of food. He NEVER stops going (unless there's a movie on). He's my little book worm. He has started saying "I love you" and it melts my heart into a puddle every time. He tries to climb everything. He has a serious sweet tooth. He has started potty training and is doing really well. He's a milk addict and will go through withdrawals if he doesn't have a fix every couple hours (it's an issue we're working on :). He is still an awesome sleeper (bedtime at 6:30 wakes up at 7:30). He does the funniest things with his eyes and even has the teenager eye roll down already. He keeps us on our toes, but also keeps a smile on our faces.

Oh how I LOVE this boy.

Happy birthday love bug!! I can't wait to see what this year holds for you and continue to watch you grow into such an amazing little boy.


5 Months Home!!

A couple weeks ago also marked 5 months home for our precious Ivan!!!

It's so hard for me to believe that next month we'll be half way to a year, although now we can't remember what life was like without our little man.

Ivan continues to learn and excel in every area. He also seems to have had a small growth spurt as his 3T clothes have now been passed directly down to Landon (who can already wear them!).

All of his therapies continue to go really well. He'll be getting a new OT next week as his prior one is moving away :( All of his therapists have become like family so it'll be an adjustment to say good bye to one and get to know another.

We are still waiting on a couple things to fall into place before we can get him the wheel chair he so desperately needs, but it wont be long now. Next Thurs. someone will be coming over to evaluate him and talk to me and his PT about what kind of chair would be best for him.

To get Ivan onto Medicaid we had to agree to do respite care for him. At first I was frustrated by this. I didn't want yet another person coming into our home for a couple hours everyday and throwing off our routine. It's already hard enough for me to fit in school work with all the therapies, appointments, and all the stretching and other homework that I have to do with him.

But after talking with the program coordinator of the organization we've chosen I know that this is going to be a blessing for our whole family. Just like with all our therapists, it will take time to get to know a care giver, but I need to humble myself and accept that an extra pair of hands, a couple hours, 3 days a week will be really helpful. Ryan and I are also looking forward to down the road when the person we choose could stay with our kiddos so we can have some time with each other.

June 5th is quickly approaching!! Soon we will be back at Gillettes Childrens Hospital for Ivan's spinal and brain MRI. While he is under sedation for the MRI they are also going to do a Botox injection in his thigh that should help significantly with his tone (tightness of muscles). They will also begin his casting while we are down there. It's our understanding that these casts will cover his legs from just under his knee's down. The casts will have to be changed every couple weeks as his body adjusts to them, but we'll be able to do the rest of the casting at home (thank you Lord!). Our PT has told us that these casts will be very uncomfortable for Ivan as they will work similar to braces. We have been told that they shouldn't limit his ability to crawl and get around though so that is good. We don't know how long he'll need to have them, but we're expecting it will likely be months.

Our little man has a long summer ahead of him. We know it's going to be full of change and adjustment for him, but we're excited to be taking these steps that are going to benefit him so much in the future.

Ivan is now able to sit for long periods of time with no support. The other day I went into the boys' room and found him trying to pull himself up into their rocking chair so he could play with the toy kitchen. I helped him up into it and was amazed at how confidently he sat unassisted and played for close to an hour. Just a couple months ago I took a video of him sitting in that same exact chair and playing with the kitchen. We had to prop him up with pillows on every side. Because he wasn't used to supporting himself in such a position he would have sudden muscle spasms that would cause his whole body to tighten up in fear.

The other day there was no sign of fear. Just a confident little boy, happily playing in his room all by himself :D






Washing dishes

Look at that reaching!!


I cannot believe how far this little man has come in only 5 short months and I can't imagine where he will be in 5 more months!!


Ivan Abraham 5 months HOME!!

 Photo dump

early morning birthday celebration before leaving to go visit the grandparents.

PT session: sometimes the PT has Landon come join the fun. Today they were playing with bubbles while sitting unsupported.

Playing outside on one of our few nice days this Spring.
windy Sunday afternoon at the park



Loves swinging with daddy
Love this one :)
Landon came running to the other side, fully expecting to see a flight of stairs. He was so confused haha
Lest you think our kids are always happy, Ryan made me take a picture of the aftermath of our afternoon at the park. Neither of them wanted to leave in spite of being cold, sleepy, and hungry... yep this is real life ;)



So there you have it friends, life as we know it right now. 

If beautiful and hard were holding hands and walking in unison that would be our life right now. I can't explain it, but despite the trials, challenges, and unknowns, we wouldn't change a thing... 

The beauty is in the journey. It's in the changing season's and the daily redemption that gets labeled as mundane.

It isn't until I take a moment to stop and look at where we were 5 months ago (or even 2 months ago) that I realize we aren't at the same place. We're growing and changing and as we do we grow into a stronger and closer family.

As always, thank you for following our journey.

To God be all the glory!!!

Thursday, March 20, 2014

Redemption of the heart

First of all, sorry this has taken so long. I should of updated facebook, but I never feel like trying to fit my feelings and thoughts about the day into a short status update.

Today was one of those days when God shows up in the most unlikely places.

We were praying and waiting for God to show up for Ivan today and he most definelty did, but I can't help but feel like today was more about "my" heart than my little man's.

Today God allowed me to sit in the same exact room where my whole life changed over 2 years ago. The small room we sat in today during Ivan's echo was the same exact room where I was when the life I once dreamed of and thought I would live was completely stolen from me. It was in that room that I first gained the title of not just "heart mom", but also "mother of a child with special needs." Although I wouldn't accept that title until well after Landon was born... it all started in that small, dark echo room. You don't forget moments like that. That whole day will forever be engraved in my mind and today when I realized where I was it almost felt like returning to the scene of a tragic crime.

Except there was no sorrow...

today I returned to the place where my greatest fear became a reality and I brought joy and laughter into it... and that my friends, brought a healing and redemption to this mama. I didn't know that my heart still needed healing from the trauma it experienced as such a young mom. All I know is that after today, I feel lighter.

Like a hard place in me has now healed.



If you would have told me December 6th 2011 that one day I would be sitting in this room with my newly adopted son, I wouldn't have EVER believed you. All I wanted back then was our "normal" back. We begged and begged and begged God for a miracle to heal Landon, but He never did. I went through a long period of being angry at God.

Today as Landon sat nestled under my chin in his toddler carrier and I pushed my eldest son in the stroller,  during our walk after Ivan's appointment, I just poured out thanksgiving to God. I thanked Him over and over and over again for not answering our prayers. I thanked him for the long hill we've had to climb with Landon because without it we would never have Ivan in our family and I can't even let my mind ponder where Ivan would be today if we hadn't adopted him.

I know that this post isn't what any of you were expecting to read. I know you're probably all yelling at me telling me you just want to know the results of his echo, but I feel like what God showed me today is even more important than the results we heard today.

I say that.... really because... I can.

I can honestly say that God has brought Ryan and I to a place in our lives where we could walk into the heart and lung clinic today praying for good news and longing for a miracle, but determined that we would praise God regardless. Knowing that no matter what we may come up against in this life we will be okay. Not because we are strong, but because our lives are safely rooted in our faith in the One True God.

A God who can take tragedy and use it to make a story more beautiful than words can describe.

A God who felt my pain and comforted me when I yelled at him and told him that He made a mistake.

A God who loves in such a way that He can be present in our momentary pain and yet in the same instant be redeeming it.

I pray that those words lighten your heart and encourage your soul to keep fighting the good fight. You don't know the redemption God has in store for you. You may only be at the begining and can't see anything further than the pain.

Would it be enough for you today that God can see your redemption.

Cling. to. Him.

And don't EVER let go.



Thank you for praying for Ivan's heart. Thank you for praying for a smooth appointment today. All I can say is prayer works!! Ivan did amazing during everything! It was seriously a very joyful day. Ryan and I were so proud of our brave little boy. He melted the nurses hearts and laid still for the echo technician. After the echo was finished we met with Dr. Fernandez who told us exactly what we have been praying for.

Ivan's heart is completely healthy and functioning properly!!

He said the difference in O2 sats was probably his bodies reaction to being under anesthesia and just something we will need to be aware of in the future.

All I can say is praise Jesus!! Praise His sweet sweet name!!

Today was such a precious gift. Not just because of the good news (although Praise God for good news!!), but because I realized that I'm becoming free from the fear of bad news.

When you cling to Jesus through the storms of this life, on the days when the clouds clear, the sun shines more glorious than it ever could without the memory of the rain.

Even in darkness light dawns for the upright,
    for those who are gracious and compassionate and righteous. 
 Good will come to those who are generous and lend freely,
    who conduct their affairs with justice.
 Surely the righteous will never be shaken;
    they will be remembered forever. 
 They will have no fear of bad news;
    their hearts are steadfast, trusting in the Lord. 
 Their hearts are secure, they will have no fear;
Psalm 112


Now for some pictures, just because I can... and I'm a super giddily proud (borderline obnoxious;) mama :)


The other day Landon grabbed Ivan's legs and lifted them up and down while saying "stretch, stretch Ivan"


Landon's learning to pull up his pants, but he doesn't really know when to stop lol

Mr. highwater saggy bum

Brotherly love <3 Melts a mama's heart!!





Sunday, March 9, 2014

Another broken heart... (4 months home update)

This month.... wow.

More than once I have found myself pausing and remembering what life looked like for our family of 4 before we entered this crazy life of therapies and appointments almost. every. day.

I am so very grateful that God gave Ryan and I the wisdom to not jump into this right away. I am thankful that we were able to take a couple months to purely cocoon and enjoy the Holidays.

2014 has already been such a crazy and busy year. 

I was sitting in church today and God seemed to ask my heart where it is at right now. After an amazing time of worship and letting my heart be opened to and reminded of the greatness and kindness of my Lord, I was able to answer Him honestly.

God, I feel like we are completely beat down... but not destroyed (2 Cor. 4:9) and yet even in the midst of this pain... You are here. Your peace that surpasses all our understanding... we feel it.... thank You

You see just when we thought we had heard the extent of Ivan's diagnosis'... just when we were finally coming to terms with his hips and how that is going to affect his future... just when we were feeling confident that we knew everything and could now begin the long journey forward with Ivan... we got another... surprise (for lack of a better word).

Ivan had dental surgery this past week. 

It sounds worse than it really was. They just filled all his cavities and did some other minor things that could of been accomplished in a dental office except for it would have been too traumatic for Ivan right now. After Ivan's very short dentist visit a couple months ago we agreed with the dentist when he told us that putting Ivan under anesthesia at the hospital was the best option for him. 

I have been dreading March 5th ever since. I figured Ivan would have a really hard time with being in a hospital for such a long amount of time, but our little man amazed both me and Ryan with how well he handled everything. We had to sit in the pre-op room for over an hour and the whole time Ivan was calm and happy.



With his little cat the hospital gave him
This was taken 15 min before going into the OR. They gave him a medicine that made him really drowsy so he wouldn't get upset when they put the mask on him.
The surgery itself did not take very long at all. Ryan went and got us some lunch and by the time we finished eating, the doctor came out and told us he was finished. We went into a room to talk about how everything went. The doctor told us that he did great and they accomplished everything they needed to, but they did notice something strange when they were monitoring his oxygen saturation's. He explained that when they put the pulse oximeter on his finger his sats were between 95 and 100 which is perfect, but when they put it on his toes they were only measuring in the low 80s. He told us not to be concerned because he obviously isn't showing any signs that he is struggling to breathe and his heart sounds good, but he thought it was something we should get checked out.

We then went to go see Ivan who was just begining to wake up. He was still pretty out of it, but the first thing he asked for was the pictures he was coloring before the meds kicked in. Ryan and I just laughed, seriously this kid is so stinkin smart!!

Soon the anesthesiologist came in and started yelling at the nurses to get another pulse oximeter on his finger and while they were scrambling to do so the anesthesiologist phone rang and he said "this is him, you have to take over." The nurses then finished what he was doing while he described Ivan to whoever he was talking with on the phone. Ryan and I glanced at each other with the, all too familiar, "what the heck is going on" look.

After the anesthesiologist finished his phone call he apologized to the nurses he yelled at and then sat down to talk with us. He told us again what the doctor had already explained regarding Ivan's dramatically different O2 sats, but then he went into a little more detail about what could be causing this issue.

It sounded to me like he was hinting at the possibility of a heart condition, but he wasn't being really clear so I asked him straight up, "Does it seem like it's being caused by a problem with his heart or his lungs?" He then sank back in his chair, sighed, and told us that he doesn't know how to explain it without making it sound somewhat frightening. We told him that we have another child who has a CHD so we just want to know what he thinks it could be. He seemed relieved that we were familier with the terminology and then went on to explain that he was just on the phone with the pediatric cardiologist, who told him that it sounds like Ivan may have Patent Ductus Arteriosis (PDA). He explained to us that there is a blood vessel that's present in a baby's heart when they are in their mothers womb, but after they are born they no longer need it and it closes. It is possible that this vessel is still open in Ivan and that is why blood isn't flowing normally throughout his whole body.

None of what he told us sounded foreign to us in fact all the terminology was all too familiar. After Landon was born he had to be placed on a medicine to keep his ductus arteriosis open until he could have his first surgery to open his pulmonary valve. We asked the anesthesiologist if he was on the phone with Dr. Fernandez. He said he was and seemed happy that we already know him. As God would have it, we were actually scheduled to see Fernandez the next day for Landon's 6 month heart echo. The anesthesiologist called it serendipitous, but we know better.

God's timing is absolutely perfect. The Lord watches over our coming and goings both now and forever more (Psalm 121:8).

The next day I took Landon to his echo and before we were finished I told Fernandez about Ivan and as soon as I said dental surgery he knew exactly who I was talking about. He told me again that from how it sounds Ivan most likely has a PDA, but there is no way of knowing until we can get a good look at his heart on an echo cardiogram.

So before leaving the hospital I stopped and scheduled not only Landon's next echo in 6 months, but also an echo for Ivan next week.

I left the hospital in shock....

In a way this one feels familier.

When it comes to cerebral palsy we're still pretty clueless...

scoliosis.... we're just beginning to learn...

Hip Dysplaysia... we have no idea....

But CHD's .... this we know.

But even though we have an amazing team already in place and even though we know the lingo, and even though we don't have to google or search for groups of parents on facebook going through the same thing... it is still scary.

I keep trying to process this in my heart.

I keep wrestling with God....

Really Lord?? Really? Did we not have enough going on? Just last week we find out about his hips and now this week.... this. Lord, would you really give us another baby with a broken heart?

When I told Ivan's pt about all this she told me that she can't imagine how hard all of this is on Ryan and I emotionally and financially.  I told her that this is our life now and yeah, it's hard, but we just focus on one day at a time.

It's overwhelming yes, but we have a foundation now. We have seen God heal and provide in the past we know He will not forsake us this time.

Today I held Ivan in one arm and lifted the other as high as I could as I sang with all my voice and heart

We believe in the kingdom come
We believe in the risen Son.

You bring our hearts to life

Lord we come with our hands up high
We believe You will satisfy.

You bring our hearts to life
You bring our hearts to life

We are alive

In the past couple weeks I have really struggled with anger. 

I feel like I have the right to be angry for everything my child is going to go through, everything he has already been through, everything he is going to miss out on, everything that has been robbed from him. But the other day God poured a truth into my soul and it's something that I want to cling to everyday as a mother. 

God spoke to my heart and told me that Ivan is going to handle all of the pain of this world the way he sees Ryan and I handling it. If you choose to take hold of bitterness then that is what Ivan is going to know, but if you choose joy, peace, and love in Me then that is what Ivan is going to grow up knowing.

I was reminded of that today as I opened my tear filled eyes in worship to see my son, the child who never sucked his thumb in my womb or fell asleep to the rhythm of my heartbeat, modeling me and lifting both of his little arms up as high as they could go to Jesus.

Seeing that makes all the pain and the fear of any diagnosis imaginable seem so small.

Our God is alive!! and no matter how scary and painful this life may be, as long as we have breathe in our lungs, we have the privilege of praising our creator. 

That is the legacy I want to leave for my children.... not a legacy of fear, bitterness, or anger, but a legacy of love.






 Now for some pictures from this past month!!

How we spend most of our days

Helping mama make bars

Playing with the alphabet cookie cutters grandma Ray sent them for Valentines day.

Eating the cookies with their names on them that great grandma sent.


opening the valentines gift from grandma Max. They were SO excited about the balloons!!
Ivan crawled around with his balloon for days later.



Finally a nice enough day to let them play outside. They were SO thrilled!!
The day he got his first glasses
They make his eyelashes look even longer, something I didn't think was possible :)

Crawling through the tunnel

I love this goofy kid so much!!

First walk to the park in 2014
4 month home photo shoot

He lost a tooth last month!!

He may be little but this kid is STRONG. With the help of his pt he's learning to pull himself into his chair.

Putting on his favorite shirt that he got from grandma for Valentines day.


He's so proud of himself
Blowing a kiss for the camera

Those eyelashes... seriously :)

Singing with the radio

Our Ivan Abraham home 4 months!!


We wouldn't trade this child for anything!!

Please pray for Ivan's heart echo on the 20th of this month. If he does have a PDA it sounds like it is a pretty minor fix, he would most likely just need a heart cath, but because it hasn't been corrected for such a long time there is a chance that it has affected the heart and maybe even caused fluid to build up in his lungs. 

We wont know anything until after the echo. Obviously we're praying that everything will look fine during his echo. We know that God can heal and we're praying for and expecting miracles for our baby.

Thank you for following his journey and praying God's will for our amazing son. No trial we face in this life can outweigh the joy he has brought into our family. 

Just seeing that smile everyday reminds me that I am blessed beyond earthly measure to have the privilege of serving and loving this beautiful creation of God. 

Mama loves you sweet boy!!