Friday, June 13, 2014

Bright future ahead (7 months home update and Fathers Day letter)

Oh my goodness, where to begin!! What an eventful and just plain "full" month May was. We are LOVING the beautiful weather whenever we get it and experiencing lots of "firsts" with our sweet oldest son!
First time at the amusement park

He was beyond excited to go on the "train"

He laughed the whole time!
Landon was super excited...

Until it started going haha
First Isagenix shake

They are a hit with my skinny mini and my picky eater!!
First wagon ride around the capitol

First time flying down a hill with daddy!!

First time eating frozen yogurt

First field trip to a museum.
First family picnic

Ivan's 7 month home Update!!

Last month Ivan lost both his PT and OT. We were SOOOOO sad to see them go, but his new ones are proving to be awesome as well.

We started a respite care program. A young lady comes to our apartment a couple hours, four days a week to help me take the boys for walks, on outings, or just plays with Ivan while I spend some one on one time with Landon or get my daily phone calls out of the way. I think this is going to be a huge blessing for our family! Eventually we want to get to the point where Ivan is okay with being left alone with her so I can run errands or just "get out", but we want to take it slow. 

He's learning his letter sounds and now knows what sound A and B make.

He got wrist splints that are going to help his wrists stay in a natural position so he can feed himself easier, crawl with flat hands, begin to learn to write and perform other skills better.

The biggest news for our boy happened last week while we were at Gillettes Childrens hospital in St. Paul. We got there very early in the morning and went through all of the usual pre-op stuff. They let me go back to the OR with him until he was sedated. For the next 3 1/2 hours Ivan received a couple botox injections in his legs, one in each of his wrists, and phenol injected in both of his inner thighs (to help correct the scissoring). They also casted both of his legs and did a brain MRI. 

Ready to go back to the OR with my baby
Feeling sleepy as the meds kick in

It took him quite a while to wake up after the procedures, but overall he did amazing!! Even though he was still very sleepy, right away when he woke up, he said "all done"... looked at the nurse and said "bye bye" and then looked at me and said "wanna go home." He got some juice and watched Masha and the bear (ukrainian cartoon) on the ipad until they took out his IV and said we were free to go.

Getting our first look at his new casts!
 After we were discharged we headed to a different floor to meet with our Orthopedic doctor. We spoke with him for a long time about what our options are for Ivan's hips (they are both completely out of their sockets). He felt strongly that because Ivan is almost 7 and his hips haven't been corrected yet that the surgery really wont benefit him very much. It is a very major surgery that will likely put him back in his development and will definitely delay his chances of walking. We must of misunderstood him at our prior visit because we were under the false conception that Ivan would be unable to walk until his hips were put back. The Dr. reassured us that Ivan's hips will NOT hinder him from learning to walk. He actually looked us in the eye and told us that Ivan can live a long, pain free life with his hips the way they are. This news is HUGE for Ivan!! This means he will not have to undergo such a major surgery any time soon (maybe ever)!! This means that we can keep moving FORWARD!! 

So we left our visit full of hope and with a new plan that goes something like this, casting every week to every other week for the next 4 to 6 weeks, then AFO's, THEN begin using a stander and/or gait walker. You read that right!!! My baby could be taking his first steps this Summer!!!

After that visit we drove a ways to Gillettes other hospital where we met with Ivan's physiatrist and neurologist. 

Still a little out of it, but rockin his orange casts on his way to visit the other dr's
Feeling much better by the time we got to the other hospital.
We met with the physiatrist first and talked about the progress we should expect to see from the injections. Then we discussed and made a plan to get Ivan potty trained. He has been having issues going potty, mostly because of his spasticity and partly because he feels unstable on the toilet. She gave us a prescription for something that will help his muscles relax and also for a potty chair that will have handles so he will feel safe while on the potty. I can't tell you how excited we are to talk with his OT and get this all going. It will give our boy so much independence when he is able to go potty :)

Then we met with the neurologist and discussed his MRI results. We got to see our little man's brain and although I don't remember much of what she explained to us, overall she said it looked really good.

There was some thinning of the white matter, but she said it was very consistent with a child who was born prematurely. She told us it's hard to know how much of the damage to his brain is due to being born prematurely and how much is due to the environmental deprivation he suffered, she said it is most likely a combination of both, but could be much worse and truly didn't look that bad over all. I asked her if she see's any reason why he wouldn't be able to catch up developmentally and she told me "no". She did say that she wants to be realistic with us and that he most likely will always have cognitive difficulties, but that she could be completely wrong about that as well. She told us to prove her wrong and that is exactly what we plan to do :)

All of our doctors were AMAZED by how much Ivan has progressed, not just physically, but mentally as well. They all seem to think that the sky's the limit for our boy!!

It has now been 4 days since Ivan's injections and casting and we are truly amazed by the increase in his range of motion and how much more relaxed his legs are. His legs are rarely scissoring which is HUGE! Today we went for two wagon rides and usually we have to adjust Ivan every couple minutes because his legs would make him slide down off the seat. Today, I didn't adjust him once!! He sat so big and tall and never complained about being uncomfortable. These little things are so huge for our family. We are so proud of our boy and can't wait to see the future unfold for him.

Ivan has adjusted wonderfully to the casts. The first day he asked to take them off a couple times, when he would usually take his shoes off (like when going inside and before bed), but we have been explaining to him that the casts are helping fix his legs so he can stand on them someday. He seems to understand and is content again after we tell him that. The hardest part for him has been not being able to take baths. Baths were his favorite part of the day and now all he is allowed are sponge baths. To satisfy his water fix, we let him play with a bin of water everynight.

Playing with water the first night having his casts

It's taken me forever to finish this post. It has now been over a week since Ivan was at Gillettes. On Thurs. we went to our local ortho clinic and were told that his casts are still in great condition so they want to wait one more week to replace them :)

Lots of changes in our families future especially concerning our precious Ivan. We are seeing God redeem the years that the enemy has stolen from him. He is such a precious child with such a tender spirit. There are no limits to what God can do with our amazing son.

My prayer is that through sharing our story that someone will realize that they don't need to be the perfect parents to adopt a child with special needs. They don't need to be "saints" (we are called that all the time and it makes me sick). We are NOT saints, we are just an imperfect couple who said yes to opening up our hearts to redemption. Yes, we have made sacrifices, but when we consider that our Ivan would likely not be alive today if he was not adopted, we realize the little things we've given up truly mean NOTHING in comparison to the LIFE that was changed. The beautiful thing is that in saving and changing Ivan's life, God has saved and changed our families life on so many levels.

To God be ALL the glory!!!

Before injections and casting
After....Our amazing little fighter, home 7 months

 Photo Dump

I love how they LOVE each other :)

Ivan's dedication at church

Pulling our boys in the wagon
Our little explorer

Daddy pulled all three of us for a while
Landon with the amazing car he helped daddy build
Sitting unsupported, reaching, and playing = a very big deal!!

I'm head over heels in LOVE with this kid :)

We got him a leap top for our long drive to St. Paul.

If you can't tell, he was pretty excited :)
Swinging with grandpa

He got to meet mama's best friend!!

A morning at the park

 Tomorrow is Fathers day so I want to post a couple of my fav pics of my boys with their daddy.

Ryan Maxwell, since our boys are too young to express through words what they tell you everyday through their affections and giggles, I will give it a whirl...

Landon would say, daddy thank you for always making the time to sit on the floor with me and play. Thank you for never being too tired when you get home from your long days at work to chase me around, wrestle, and tickle me. Thank you for letting me stay up late with you on the nights mama goes to work. Thank you for teaching me how to wrestle and kick the soccer ball. Thank you for reminding mama ALL THE TIME that I'm a boy and that's why I'm so crazy.

Ivan would say, daddy thank you for always carrying me whenever you can and not making me sit in the stroller. Thank you for wrestling with me, throwing me up in the air, and treating me just like you do Landon. Thank you for being patient and tender with me when I've had a hard day and completely worn mama out. Thank you for teaching me how to do things on my own even when it takes a long time. I didn't know what it was like to have a daddy before...I'm so glad you found me daddy.

And they both would say... daddy thank you for being our hero and our buddy. We know you'll always be here for us. Thank you for how you love mama, she is always so much happier when your around. You're the best daddy in the whole world and we luv you OH much!!!