Monday, February 27, 2012

{New Swing}


For the past three weeks since Jayden came home for good, Adam and I have been using every ounce of our creativeness to try and satisfy our new little boys need for sensory input -- particularly movement.  I've been eyeing up this swing at IKEA for a long time but last week we finally made the plunge and purchased it.

This probably, at the inexpensive price of thirty five dollars, has been our best investment yet!  both Jayden and Angela love this swing.  At first we thought this would be so hard to mount but we found the perfect spot and eight screws later it was ready for our monkey boy to use.


We have it very low to the ground so Jayden can scoot right over to it and climb in!  He will spend a good hour playing in his bag swing and when he's done he seems to be able to stop moving for a good amount of time.  Angela also is totally thrilled with it and being the thrill seeker she is, she likes to be pushed and spun more than my stomach could ever handle.


Tomorrow Jayden sees his doctor for the first time since discharge.  We are very eager for this appointment as Adam and I both have lots of question and things to talk about with him -- mostly what the heck we can do about these crazy secretions.  I'm not sure there is anything left to do as the medical team in his previous placement was pretty on top of things -- but it's worth looking at again.

Jayden is needing suction almost every hour, with the exception of afternoons where he will go a good two or three hours.  His humidification tubing at night is completely saturated with secretions by morning.  It's smelly and I can't imagine it doesn't make him feel yucky at times.  We'll see what we can come up with.


Jayden has made so much progress in the three weeks he has been home.  His safety awareness has taken off and we no longer are on constant high alert for Jayden falling and throwing himself around.  He still needs very close supervision but even when he falls he always protects his head just like any typical toddler.  

It's so very cool to watch progress happen!

Wednesday, February 22, 2012

{Preschool and Painting}


Yesterday I took the little ones to visit Angela's soon to be preschool.  It was a huge step for me -- even bigger for little Angela.  I'm not sure why I was so nervous, but I was literally shaking as I walked in the door.  I guess in part it's because no matter how many times I say that I don't care what people think -- truth is I guess I kinda do.


By sending Angela to a typical preschool, I realize that we are stepping out of the norm.  I know there are tons of people who could give me a thousand arguments why Angela would do better in a special classroom, but I could also give you a million why she wouldn't.  I was thinking yesterday about how I wish we could all just get along.  There in one thing missing from the special needs community at times -- the understanding that what works for your kid may not work for mine.  What a therapist has done for years on other children and found success, just may not be successful with mine.  Every child is so different, and every circumstance is so different as well.  So before I even continue -- can we all just get along.  No mean messages please -- thanks!



Anyway -- I think I was nervous simply because I was afraid of how the teachers and children would respond as we wheeled into the classroom.  This is where I went wrong.  I assumed we would be the big elephant in the room -- but we weren't.  They welcomed us with dare I say excitement?!  The kids all came running to Angela wanting to try out her iPad.  I had her iPad set to the My First AAC app which we lock on social responses, so she was happy to say hello to all her new friends!


The teacher went on to tell me everything that the kids did today.  As she was talking I first started thinking -- oh Gosh, Angela can't do any of that but then my mind started to expand -- maybe she can!   The teacher made the statement to me that she felt that not only would Angela do well there but that the students and teachers would also benefit from having Angela as a classmate.

She totally won me over.


The class in small, maybe ten kids and the room is huge.  This would allow Angela to use her KidWalk and other equipment more easily in the classroom.  The class will meet two days a week from 9:00 to 11:30.  This is totally perfect.  I think anymore would be overwhelming and also allow the other days to continue doing her classes at the YMCA and other therapy we see fit.  Angela will have full support.  When we go to write her IEP I will make sure she has a full time aid or nurse.  I'm so excited for Angela to move onto this next stage in life.  Sure there are so many risks.  Sure, she will get sick and she will probably get overwhelmed at first -- but it's all gonna work out.  And if it doesn't we will re-evaluate and choose a different setting for her.

In the spirit of preschool we came home and did a little painting.  I know I say this all the time -- but holy cow -- is this the same Angela we welcomed into our home over a year ago?  So focused, so opinionated -- no stimming and most of all so very happy.

This girl rocks.  Seriously rocks.

Tuesday, February 21, 2012

{Seating Clinic and a Need for Speed}


Last week we took a trip to seating clinic to find some proper seating for our little monkey.  Jayden is a tricky boy to find proper seating because although his supportive needs are not that high his safety and durability needs can be hard to find a match.  Unless you have seen Jayden in action you probably just wouldn't understand his need for speed.  He never stops. It partly due to the fact that he's a boy and he's two years old but most of it is due to his head injury -- his regulatory controls are just not there.


He has this need to climb that just can not be satisfied.  At times it can be difficult to watch.  Just imagine you're laying in bed and your body is aching and you just can't find that perfect spot -- tossing and turning trying to find comfort.  That's a good description of Jayden -- only it never stops unless he is restrained in a chair.  As soon as we put him in his high chair or stroller you can just see him melt and find peace as if this huge weight was lifted off him.



So we are trying to find that perfect chair to help him find comfort and also safety.  We ordered him the new riffiton activity chair which will work great for him.  I've always liked this chair and tryed to get it for Angela last year.  The main feature that I love is the fact that it's vynal -- I can wipe it all down with no yucky fabric to hide dirt and drool. We still have a big need for a wheelchair or adaptive stroller, but we wanted to get the activity chair first so insurance would not give us a hard time.  Jayden previous got a transport chair but it's just not appropriate for his new life.  It does not hold his equipment without tipping over and it is just not a good fit for his body. 


For now he is using a nice stroller that we purchased and it works ok, but again the safety aspect is huge for Jayden.  No typical stroller has the type of five point chest harness we need to keep him put.  Yes many trach vent kids use typical strollers but Jayden is not your typical kid.  He's kinda a mix of a big fluffy teddy bear and a little bit hulk hogan.  


Soon Jayden starts gymnastics which should give him an outlet to climb and tumble in a safe environment -- in addition to the other two gym classes both the little ones attend on a weekly basis.  Angela will be in preschool yoga and Madison starts swimming and field hockey.  So fun -- so exciting.

I guess all the Owen's kinda have a need for speed.

Monday, February 20, 2012

{Seven Year Old Teeth}


You all know what I'm talking about -- those seven year old teeth.  It's like one day I looked at her face and saw this sweet baby like procelane face and then it developed holes.  And then it happened -- she grew up.  How is it that teeth can change my little girls face so drastically -- so quickly?


Seven year old teeth are hard for this mommie to handle.  It's a vision of future adulthood all crammed in my little girls mouth.  It's life shouting at me, telling me that my baby girl is growing up and no matter how hard I try to deny it, she is slowly turning into a young lady. Let's not even think about the other young lady things yet to come -- that for sure will send me in a downward spiral.



Madison is amazing.  But, I don't really need to tell you all that.  After all, most of you have watched her grow up right here on this blog.  You have watched her live a chaotic life in the hospital beside Gavin and you also watched her say goodbye and grieve.  Someone forwarded me a blog post last week and in it read this: a sibling of special needs kids is anything but typical.  They couldn't have said it better.  Madison is anything but normal.  She carries a life full of experiences that most little girls her age have yet to experience or even think of.  But that's not such a bad thing.  She has this ability to love and accept that is sometimes even hard for me to comprehend.  She is beautiful.


With growing up also comes new activities and busyness.  She wants to join clubs at school -- collect every box top available and wants to dress like every character on the Disney channel, particularly those I don't like.  Then there is the talking -- the non stop talking.  I know she has important things to say, but most of the time she is just talking nonsense and I've developed this unique ability to pretend listen, as to not hurt her feelings.  Again -- I know you know what I'm talking about.


I look at these photos and it's so hard to see my baby.  She's changing faster than I can keep up.  I pray everyday that Adam and I are doing ok -- raising her right.  I think so, but like any other parents we are always worried we are going to mess her up.


Last week we celebrated her seventh birthday.  Seven years since I held her and touched her beautiful skin for the first time.  I'm so honored to be her mommie -- to stand beside her and keep pushing her forward.  She is going to do amazing things.

 I just know it.

Friday, February 17, 2012

{Fly, Little Bird}


So much has been happening with little miss Angela, but with all the craziness surrounding Jayden's adoption I've had little time to sit down and do an update on the little queen.  Angela has had one heck of a past 6 months.  It started with her nissen surgery, which she had horrible time recovering from  -- it took her little belly almost 3 months to wake up and return to baseline.  She went from oral feeding to TPN all in a few weeks.  Thankfully she is back to baseline -- even better now that thanks to the nissen!


After her recovery from surgery Angela began to make huge progress in her physical development.  She was stronger than ever.  She started taking independent steps in her gait trainer and could stand up against a table or couch for a few minuets.  Angela, like every other child in the tri state area, begun with a nasty cold.  It was relentless and took a major toll on her body.  With the illness came seizures and with seizures came very sad regression.  No more stepping, no more standing and lots of self stimming.  This is my first experience with seizures.  Angela has always been diagnosed with a seizure disorder but they have been very controlled to the point that we were talking with her neurologist about weaning her off the Keppra.  Now her dose is doubled and she is still breaking through. Seizures stink.

With that said, Angela is an amazing stubborn little girl.  She's fighting back and is slowly regaining skills and starting to act like the Angela we know.  We are still working with her neuro team to get an upper hand on her little brain.  


Can you believe Angela in going to turn four this Summer?  I am in total shock and maybe a bit of denial.  Due to her adoption and our desire to create an environment of permanency and security for her, Angela did not move on to a preschool program after she graduated from birth to three services.  I'm so glad we made this decision.  Despite the slack we received, I could not be happier with how this past year has turned out.  We did initially have an IEP (messed up one, but an IEP) and I'm proud to report that Angela has met most of the goals without the crazy amount of services they recommend for her.  I know this is not for everyone but it worked for our family and most importantly it worked for Angela.  But now we need to start looking at school.  Oh my gosh -- school.  Really?

I've learned so much over the past six years regarding special needs and one of the most important things I've learned is that a child's success and failure often lies within the hands of the parent.  We have a unique ability to both hold them back and push them forward and the crazy part is that those two actions are normally both out of love.  I love Angela so much -- we have watched her transform into this amazing child -- breaking out of the shell that held her deep within herself.  Out of my love, I want to keep her with me forever, after all, I know her best and I've come to learn how her little mind works.  But that would really only hold her back.  I'm needing to remind myself of this every time I think of sending her to school.  


Angela will rock school.  I know she will.  I just need to let go and let her fly.  My fears of people not correcting her inappropriate behavior, other people's inability to understand her language and her taking advantage of other's peoples lack of "Angela knowledge" are all valid, but how can she learn if I don't let her try?  

Next week I'll be touring what I think will be her preschool in the fall.  It's a typical preschool classroom where she will receive all the support she needs through the IU.  I'm so excited for her to have this opportunity. If it works, great.  If it doesn't work we will explore other environments.  I'm excited for her to test out all the skills she has learned over this past year and a half but most of all I'm excited for my little bird to fly.

Monday, February 13, 2012

{One Week Home}


Has it really only been one week? Once again, just like with Angela, we are reaching the point where it feels like Jayden has always been apart of our family!  We started out the week pretty darn tired but in a weeks time we are in a nice little routine -- relearning how to do things with an additional child and finding our new normal.


Jayden acts as if he is the happiest boy in the world.  He is adjusting with no issues, no regression, sleeping like a champ and also beginning to bloom.  He wakes up each morning and snuggles his head in the crook of my neck and just melts in his mommies arms, which is return makes mommie melt.  We have been very active this past week and Jayden is loving all the new adventures and meeting lots of new people.



It really has been amazing to watch the so many people around us who love and support our family, take Jayden in, just like they did with Angela, and love him.  So many people in our lives have an amazing ability to look past the disabilities and see our little ones for the amazing kids they are -- and at the same time also recognize the importance of not leaving Madi out, but also celebrating her as she continues to grow and walk this journey.  It's just so beautiful to see.


This Sunday we finally were able to make it back to church with all three kiddos.  Amazing.  I can't begin to describe the feeling of standing and worshiping God and at the same time seeing the amazing gift God has blessed our family with.  Adam and I both are daily reminded of just how amazing God is -- taking ordinary people and doing extraordinary things.  

Totally humbling.


This past weekend we also celebrated Madison's birthday, but I want to save that for another post once we have a little mommie and Madi photo date.  

Thanks as always for loving our family!

Tuesday, February 7, 2012

{Welcome Home Jayden}


Yesterday we picked up our little boy and brought him home -- forever home.  It was the day we had been longing for, for the past three months.  We had been waiting for the court order to discharge him from the facility and allow him to official move into home -- and around eleven o'clock we got just that.  I looked down at my phone and the text read -- "they said yes!"  Obviously we are so happy and are filled with so much love for this amazing little boy.

Now begins the interesting part -- learning to live this life.

I remember before we even entered the world of adoption I always wondered what it was like.  The only adoption I ever heard of was from overseas or when a teenager wanted to give up her baby.  I never really knew this kind of adoption existed, but then again before Gavin got sick and died I never really knew just how many families are dealing with chronic and life threatening illness or like us have already said goodbye.  So let me tell you what it's like...


Domestic adoption, specifically out of the child welfare system is kinda like the nine month of pregnancy only it can be extended for many many months, maybe even years.  It can be a long emotional roller coaster -- lots of uncertainty but in the end you are given the most beautiful gift -- a life.  You still feel all the same emotions -- joy, love, and overwhelming need to prepare and also feel the same fear, exhaustion and a little bit of Mommy inadequacy.

Just like bringing a newborn baby home, there are many sleepless nights -- after all, you need to learn all the noises and their movements and you still feel the need to watch them breath. Even though they may have not been born of your flesh -- you still look them from head to toe, taking note of all the cute little feautures like the small dimples on his back that warm your heart.  


Adoption is simply amazing.  I look at Jayden and although I am very aware of his past and feel it should never be forgotten -- I see more of his future -- the amazing life he has yet to live, full of opportunity love and acceptance.

Adam and I could not thank each and every one of you enough for all the love, prayers and support you have given out family these past months and many of you these past years.  Keep praying that God gives us the strength we need and maybe that our coffee will give us the extra umph we need as we transition and learn how our new family is going to do this adventure.

**As a reminder, we cannot show Jayden's face until adoption is finalized, which takes about six months.  Trust me -- he's very handsome!