Oh the places we'll go

3 years ago

2012-02-02T17:25:00.000-08:00

This blog was started 3 years ago to keep our family and friends informed of the latest news. We were just starting our journey to become foster parents. We had no freaking idea the journey we were about to take but we were ready, or so we though. Malachi came into our lives like a flash. For moths we prayed for him while he was fighting for his life in a NICU 2 hours away. We cried, worried, hoped and dreamed for him. What would life be life with a baby and a baby with special needs at that? We were terrified but so ready to hold him and kiss his sweet little cheeks. At our first meeting I fell head over heels in love with him. His little body fit perfectly in my arms, his big brown eyes melted my heart and his sweet hands tugged on my very soul. He was my son and at that very moment I knew that no matter what lay ahead I was going to be by his side every day of his life.

Soon we were able to bring him home and let me tell you the tears that filled my eyes on that drive home were like none I've ever experienced. FINALLY I had my son in the back seat. The son that I prayed for, cried for, hoped for and loved with every fiber of my being was coming home. It's a time I think back to often. No I didn't carry Malachi in my tummy, no I didn't get to bond with him like a newborn does with their mom and no I was not legally allowed to claim him as my son but I knew he was here to stay forever. I trusted that God would make that happen. Malachi has NEVER been anything other than my son, never...not once.

The past 3 years have been full of challenges, struggles and fear's so indescribable but it has also been full of hope, laughter and love. For the past 3 years I have dreamed about what is going to take place tomorrow at 12:15pm. I've played it out in my dreams, I've spoke about it with my husband and close friends and now my dreams are coming true...I'm still in shock.

Tomorrow we are going to adoption court and Malachi will officially become ours. No more home visits, background checks, travel consents, surgery approval from the state. As of tomorrow I am legally him mom and can make every decision for him. I can sign paperwork as him mother. I can change his name at his doctors offices and at school (no, legally his name is not Malachi, well not until tomorrow)...tomorrow makes it official even though I have been his mom always.

My parents, brother and best friends will be joining us in the court room as the judge signs the final paper. Together we will witness the end to a very long journey and together we will celebrate crossing the finish line together! I am so freaking excited!

Tomorrow Malachi will be ours...forever and ever. And that is the most awesome happily ever after I have ever experienced!

Make-A-Wish

2012-01-17T06:55:00.000-08:00

A few months ago I was contacted by one of Malachi's old nurses from his pediatricians office. She had left the office for a new opportunity as the director of Stroke at the local hospital. She called asking if she could use Malachi as a case study for a class she was taking which was full of doctors and nurses. I, of course, agreed and began to re-tell the story of Malachi's stroke and subsequent brain surgery in Boston. She wanted to make sure that the others in her class were educated on pediatric stroke and Moyamoya. Well after her perfect presentation one of her colleges suggested she nominate Malachi for a Make-A-Wish. A few days after Christmas we found out that Malachi was approved and wold be able to grant a wish. Well that day is next week. The wish granters will be here to grant any wish Malachi can come up with. Of course Malachi can not express his wish, so we have to do it for him. We have struggled trying to come up with the perfect wish, one that we know Malachi will love. After a few weeks of talking we think we finally have a wish that will be perfect for Malachi and on Tuesday next week we will officially make Malachi's wish! We are so excited for him and know this will be a once in a lifetime experience for him! Can not wait!

23 hour observation...wonderful.

2011-12-01T06:07:00.000-08:00

Tomorrow we will be taking Malachi to the children's hospital in Madison, WI. He needs new tubes, his 3rd set, and they will be doing an ABR. While we are anxiously awaiting the results, we are not so excited about the 23 hour post op observation that is now required each time Malachi receives sedation. Yes, you read that right. Due to his "extensive medical history and recent Moyamoya diagnosis he is now required to be observed no less than 23 hours after sedation wears off. " Blah. I KNOW this is for his best interest, I KNOW 23 hours is no big deal in the grand scheme of things and I KNOW relative to what others have to go through its a ridiculous frustration. That being said, I still HATE spending the night in hospitals and I am not looking forward to this one.

While sulking in my own pitty party, I got a brilliant (if I do say so myself) idea! Since we have spent a fair amount of time at 7 different hospitals I feel I have to review them for the masses. You are welcome. It will be based on our experience only so please don't e-mail me complaining, we all have different opinions and that's okay! Be looking for it in and coming days!

I've got packing, cleaning and laundry to do. Don't be jealous!

While we were away...

2011-11-24T17:45:00.000-08:00

Fist of all...HAPPY THANKSGIVING! We had a fabulous day at my aunts house with my entire family! The food was amazing, the laughter was abundant and the memories made will last a lifetime! I cold go on and on and write a post about what I am thankful for but it seems boring and mundane since we are are usually thankful for the same things...family, health, friends, husbands, children...you are thankful for the same right? Yea, I thought so. Don't get me wrong, today was all about an attitude of gratitude but the last thing you want to read is yet another blog about Thanksgiving...I'll spare you that much! :)

Moving on...Elijah is officially a full time walker! Strap on the running shoes everyone because when he finds his sea legs there will be no stopping him! I'll try and get a video of the drunken sailor this week, it's a good laugh!

Malachi is having yet another procedure next friday. His 3rd set of tubes are going in and he will be having a sedated abr. We are so happy that they are finally doing this. It is something we have been fighting for for three years. I cant wait to know how much he can hear and if there is any hearing loss. Speech is a huge concern, he is sooo far behind, we are hoping to find some answers next week. Unfortunately, each time he has sedation he is required to stay in the hospital for 23 hours for observation. This is a new requirement and not one we are looking forward to but it is for Malachis best interest, so we will grin and bare it.

That is all that has been going on. We are just living the dream each day.

Burrr...

2011-11-15T08:03:00.000-08:00

It's no surprise that winter in northern Illinois suck. It's cold, windy and nasty white stuff falls from the sky. I am so thankful my children have warm winter coats, hats and gloves to keep them warm when we brave the elements. Unfortunately many children will walk to the bust stop cold and embarrassed because their parents can not afford a winter coat. We are facing very challenging economic times and many parents are struggling to provide for their children. My husband teacher in a very low income school, where for most, meeting basic needs are a struggle. He has had student who lived out of their car, students who could only afford to wash their clothes once a month and students who will be cold this year because they don't have a winter coat. Josh and I decided that needed to change. EVERY child should be warm this year and it's our goal that each child in his school that needs a winter coat will have one. Will you help us? Can you donate $20 so we can purchase a winter coat for a child in need? Can you purchase a winter coat and send it to us? What about hats and gloves? Do you have extra ones laying around (in good condition)? Please consider helping us gives these children the gift of warmth this year! Please e-mail me if you have any question or are willing to help! Wolffie627@sbcglobal.net

ENT..ABR...OMG!

2011-11-11T16:13:00.000-08:00

A few weeks ago Malachi got his first ever ear infection. We thought this was weird, he's never had one and I didn't think he could get one because he has tubes. While they were looking around in his ear they noted that it looked like one tube was coming out. I immediately called the ENT and could not get him in till last week.

While at the ENT last week, they confirmed that the tube was nearly out. Dr. M went ahead and pulled it out right in the office. Malachi also had a hearing test which was yet again inconclusive like the 30 million other ones he has had. FINALLY they decided that a ABR was the best option. December 2nd is the magical day when Malachi will have new tube put in, his ears irrigated and and ABR performed. We are looking forward to finally having some answers!

Fast forward to today. Malachi woke up with discharge from his ear. Dr. M confirmed that it is yet another ear infection. My poor baby is miserable! I do not know how you mom's of kids who get these often survive. I'm waving my white flag....

Please be patient!

2011-11-07T17:03:00.000-08:00

I am growing more and more aware of dirty looks, the eye rolls and the whispering from people. So here it is, a news flash for those whom have nothing better to do than criticize my parenting...Malachi has sensory processing disorder! His hitting, the yelling, the licking, the refusal of foods, the throwing, the hair pulling and yes, even the grunting is all from the sensory issues he has. It's not because I don't discipline him. Now that you all are enlightened STOP with the childish behavior.

A little more explanation may been needed for some of you...so here it goes.

Malachi is a good kid. He typically doesn't hit to be mean, it's usually for the sensory input he gets when his hand smacks your leg. It feels good to him, it gives him something inside that hes not getting in typical ways. He licks and pushes for the same reason. We are working hard to find things that give him the same input but doesn't include humans (or animals for that matter) getting beat up on. One things that we do use is a pillow. If we notice him hitting we guide him to a pillow he can hit. If he is pulling hair we give him pop beads he can pull apart. But please note...if you are in his face, talking to loud or if there are a lot of people around there is a good chance you are going to be pushed, hit or your hair will be pulled. This is how he was made and had absolutely NOTHING to do with me or Josh.

So here are a few helpful things you can do next time you are around Malachi...
1. When he is seeking sensory input by hitting, pushing or pulling ask him to have quiet hands. Please do not tell him no, as this does nothing but give him attention and reinforce the behavior.
2. Keep your distance. At times, Malachi loves a good cuddle but generally speaking he dislikes people in his space. So don't plop him right in front of your newborn baby because the outcome will be a screaming baby.
3. Talk softly and calmly. He responds so much better to someone who gentle in spirit.
4. Be positive. Malachi LIVES for attention of any kind. We have found that the best way to get him to listen is to praise the positive and ignore the negative. See point number 1.
5. Redirect. If you are reading a book and he keeps hitting the book...find something else to do. Whatever you do, do NOT continue with the same activity if you have asked him more than 3 times to have quiet hands.
6. If all else fails sing. Warm up the vocals and bust out your best twinkle twinkle little star or itsy bitsy spider. He LOVES to sing and responds positively to it as a reward for good behavior.

Above all, be patient with him. His behavior comes from a host of underlying issues (poor communication, the stroke and sensory issues) not because he is inherently naughty. Follow my tips and I promise you he will be a different kid!

Now that I got that out...where is my glass of wine?

Happy Birthday Elijah!

2011-11-07T06:35:00.000-08:00

We celebrated Elijah's 2nd birthday this weekend! It was a blast! 50 of our closest friends and family came to party and party we did! We served appetizers, had a caramel apple bar and sent off wish lanterns. We also roasted smore's on the bonfire and opened lots of presents!

Unfortunately, I am horrible about remembering to take pictures! So, thank you to whoever found my camera and started clicking away! To bad the only picture I have are these! :(

A few of the lanterns going up!

It was windy, which made it difficult to light these things but they are so pretty!

And Finally my sweet little man playing with his new 4 wheeler from Josh and I. Happy birthday my little love! I hope all your wishes come true!

3...2....1...BLAST OFF!

2011-11-01T16:19:00.000-07:00

For Halloween the boys were a astronaut and a spaceship. We got the boys up from nap and fed them dinner. I made some yummy soup. The boys played while Josh and I ate dinner with my parents. Then we got the boys ready to go out and get some candy! Our neighborhood is FILLED with kids, it was great to see so many people out with their family, it's one of the MANY things I love about our neighborhood. Malachi was way into trick or treating this year, it was so fun to watch him collecting his candy in his bag. Since Elijah is still not walking on his own, he got to enjoy the evening in the wagon, watching Malachi do all the work.

Our neighbors up the street were serving hot coco and hosted a costume contest, the boys didn't win, but we had fun none the less.

By the time we got home, the boys were cold and wanted nothing to do with their costumes anymore. Overall we had a wonderful evening!

Speech

2011-10-21T06:40:00.000-07:00

Let me start off by saying I am by no means a speech expert. In fact, I am far from it. However, I do find it VERY helpful when parents share their ideas with me. Not every kid learns the say way so it's important we continue to try new things until we find a way that clicks.

Our number one concern with both boys is their speech (and the fact that Eli is nearly two and I am still carrying his chunky butt around...it's time to walk already dude!). We recently sought out a speech therapist outside of early intervention. I was tired of playing the game, being told we would start next month and that turning into 2 and 3 months of waiting. Before I knew it, Elijah was 20 months and had NEVER had a speech therapy session. He had been evaluated and told that we needed weekly ST, but there was no one available to see him. Thank you state of Illinois for being in such a financial tailspin that you can not pay the EI providers for weeks and months on end. Don't even get me started on that.

After being told Elijah would start speech as soon as the kids went back to school and then being told 3 weeks after school started that they didn't have anyone to see him, I flipped my lid. Word were exchanged and I decided no matter the price, Elijah NEEDED speech.

We were blessed to find an AMAZING therapist and in the 5 weeks Mrs. Ali has been seeing Elijah, we have seen major verbal advancement. Thank you Jesus!

Malachi is another story. From day one he has had feeding issues. He is my sensory kid and wanted nothing to do with chunks of any kind. He ate stage 1 baby food well into his 2nd year of life. In the last year or so we have been getting a larger variity into his diet, but it's still a struggle. He eats yogurt, applesauce, chicken, lunch meat, hot dogs and pretzel rods. That is it. His verbal noises have been minimal and only says 3 words on a consistent basis, yeah, no and ok. In the past few weeks we have seen great progress with him imitating sounds and words but he still has a LONG way to go.

Here is what we have been working on.

This is Malachi speech binder. He brings it to school daily where Mrs. T works on it with him. We work on it at home nightly too. It's a simple binder with laminated sentences in it. This one simply says "I see.." a black spider, an orange pumpkin, a while ghost and so on. Malachi matches the pictures by putting them in the sentence. We say it and we sign it.

This Is a new story we got this week that focuses on the "up" and "Whee" sounds. It's a simple book that repeats up and whee over and over again. Each page has a removable image that Malachi can put on after he makes the required sound. It's supposed to be a reward but Malachi could care less so we often sing a quick song after each page.

These are Elijah's sound cards. Each day we practice making the sounds on the cards. He has done very well with these. A few of the sounds are "hohoho", "woo woo" and "moo moo". We have a few copies of the cards and get creative with them. Mrs. Ali attached them to foam fish and put a magnet on the other side. She has a fishing pole that he uses to catch a fish and then he is required to make the noise that is on the fish. It's a fun way to mix things up.

The sound cards come from this book which I can't speak more highly of. It's technically for children with Apraxia, which Elijah does not have, but we have found the same techniques taught in this book he responds well to. It goes into a lot of oral motor planning and had gestures that represent sounds. So far it's be a wonderful resource for us. Unfortunately the book is $300 and is on loan to us but is totally worth the investment!

What do you do at home to encourage speech? Do you have any good ideas that your children have been successful with? I would LOVE to hear!!

Conference time!

2011-10-20T06:26:00.000-07:00

We had Malachi's first ever school conference last night! I'll be honest I was worried. My biggest worry you ask? It sounds silly but I was worried that the staff wasn't going to like him. Crazy thinking I know but it was my biggest fear!

His teacher is nice but I've never got that warm fuzzy feeling from her. Up until last night she had never swooned over Malachi, like all who meet him do. He has the smile and personality that just wraps around your heart and holds on tightly. At the same time, Malachi can be a handful. He is confident, stubborn, independent and defiant. He has the ability to drive a person mad, trust me I know. No one ever wants their child to be "that kid" the one teachers hope are absent, the one who is constantly in trouble and the one they can't wait to get rid of at the end of the year. Yes, I WAS worried that Malachi was "that kid" to the staff in his classroom.

I was AMAZED when I walked in the door and heard NOTHING but good new about him. He is referred to as "the peach" by his teacher which delighted my soul. He does require a stern voice but generally does what it expected of him. He is understanding the concept of his picture schedule and know's to check it first thing in the morning. They commented on his love of music and how they often use that as a reward. He still prefers to play alone but is often the leader of the giggles at snack time and gets all the boys laughing (he has no girls in his class). He enjoys working on the smart board, especially watching his shadow. He can now do a 4 piece puzzle (woo hoo!) and and correctly identify 4-6 colors. They commented on how quickly he picks up new signs (sometimes up to 5 new words a day). Speech is still our biggest concern but his Speech therapist sees great attempts at saying new words. We clap out the syllables for him and they seems to help him. She is starting to notice him using the beginning sound of a word to get what he wants. For example "mmm" for more and "uh" for up. We are starting new jaw strengthening exercises at home to help decrease the drooling and increase proper chewing. His speech therapist is fantastic we are very thankful for her!

Last nights meeting assured me that Malachi is in the right place with the right team around him and we are so thankful for that!

Elijah

2011-10-18T09:53:00.001-07:00

Can you believe that this little smiley, fun loving, dare devil, food hound is going to be 2 in a few weeks? Yep, neither can I.

I suck.

2011-10-17T11:44:00.000-07:00

Sorry, sorry, sorry for the crappy job I've been doing with the blog lately. Thanks for sticking around despite my extreme lack of posting.

In honor of Malachi's first 2 months of school being completed, I figured I'd show you what he has been working on. Right now our focus is colors and shapes. Malachi knows all the signs for the colors but can not recognize them for the life of him. I borrowed a laminator from Elijah's speech therapist and got to work making very simple flash cards. Malachi has poor vision and nystagmus, he struggles with visually overwhelming pictures so simple it is.

On the back I put the sign language for each sign as a quick reference for those who don't know.

The other thing we are working on are shapes and matching. Puzzles have always been a struggle for Malachi because they can be visually overwhelming. This is our take on a puzzle, shape identification and matching all in one.

Each paper have 2 shapes on it. Malachi is given a choice between 2 shapes in my hand. One begin a shape on the page the other doesn't match. He can place the shape on top of it's duplicate. This has been so helpful for him. He get's frustrated and uninterested if he is visually overwhelmed this allows him to learn and gives him to ability to succeed!

These shapes double as flash cards as well. I found it eaiser if I showed him the actual shape rather than a picture of a heart on a rectangle card.

I would love to hear what you have made for your kiddo's!

The wheeze

2011-10-10T15:20:00.000-07:00

The infamous wheeze is back and ready to take a hold of my wee one's lungs! Croup has grabbed a hold of Elijah and with each bark, I mean cough, he winces in pain. He sounds like there is molasses in his lungs and not even the best pharmaceuticals have been able to rid him of this beast! The hum of the nebulizer has been constant in our house, I'm even hearing ghost treatments going on while I sleep. Tomorrow will make the 3rd week of these shenanigans and I, for one, am ready to set it off on it's maiden voyage right out of our house, complete with the bubbly bottle of goodness...anyone else need a glass?

A little about Elijah

2011-10-04T16:20:00.000-07:00

Oh my sweet little Elijah, what can I share with the world about your personality...hmm...OH WAIT, I got it.

Elijah is hungry. Yes he is hungry in the tummy rumbling sense. He eats everything in sight, seriously. I found out today the he only weighs 2lbs LESS than Malachi. Food hungry is not what I am talking about though. Elijah is hungry for knowledge. His brain is a sponge and we often find him sitting and watching the world around him. He is quick to master new tasks and gets frustrated when he is not successful on the first try. He watches mouths as if he is trying to read lips and is constantly trying to make new sounds. Although things like speech, gross motor and fine motor are still a struggle, Elijah is hungry to learn.

It's one of the many things I love about this little man and a character trait that will take him far. It is our prayer that he continues to seek and accomplish all that he sets his mind to. Isn't that something we all wish for our children? Those with special needs and those without?

That time again

2011-10-03T16:18:00.000-07:00

It's October and that not only means it is fall but also Down syndrome awareness month! Many of you are posting each day to educate your readers which is AWESOME. I believe strongly in education and this is a great opportunity for many. This year, however, I decided I didn't want to do the typical 31 for 21 posts. I wanted it to be more personal, more about my children being more alike than different. I wanted my blog posts to educate people one one simple fact, that my children are just that...children...like yours the ones who walked at a year and talked at two, the ones who are happy and well adjusted, the ones who participate in extracurricular activities and the ones who laugh when you make a silly face. Yes my children have Down syndrome but that's not the only thing that defines who they are as children. There is a whole gamut of personality traits that lay behind those almond shaped eyes and my hope is that this October you will be educated not only on Down syndrome but on my children as a whole. They are full beings and can be described as so much more than "the kid with Down syndrome."

My hope is that over the next month you learn something about yourself while learning about my amazing children. My posts will not happen daily as two busy toddlers keep me running from here to there but I will do my best to post at least twice a week! So pull up a chair, get some Kleenex and get ready to fall in LOVE with two beautiful little men.

show me the CHEESE!

2011-08-31T06:38:00.000-07:00

Just my boys being silly.

What do you do?

2011-08-24T10:14:00.000-07:00

Let me start off by saying I'm a tell it like it is kinda girl. If my husband irritates me, I tell him. If a friend says something that rubs me the wrong way, they will hear about it. I take pride in the fact that I normally confront disagreements with a gentleness.That being said, I am still human and on occasion I am to blunt and have hurt the feelings of those I love. All this to say I need your help.

Today when I picked Malachi up from school a lady approached me saying "are you going to pick him up from school everyday?" To which I replied, I will be picking him up 90% of the time. Clearly she didn't like this answer as she continued with a dramatic eye roll and said "Then you NEED to call transportation and let them know." And with the my conversation with her was over. Malachi's teacher then stepped in and ever so gently offered a few options and said she could call on my behalf if I wanted her to.

When I got in my car I found myself getting angry about that way this lady spoke to me. I've never met the women and felt like she came out with guns blasting (little does she know I have cat like reflexes..HA!). When I got home I immediately called the bus barn (where it got that name? I have no stinking idea.) to discuss our plan. I also sent a quick e-mail to Malachi's teacher so she was aware I took care of it. Now I'm left wondering if I should say something about the way I was treated by the mystery lady, or do I let it fly and move on. I want to say something so she doesn't think it's okay she takes to me that way but on the other hand is it really that big of a deal? What to do....

While I blog

2011-08-23T06:46:00.000-07:00

I'm sitting at my computer by the window while I type this. Malachi is at school, Elijah's is looking at books in the play room and the dogs are sleeping at my feet. While the inside of my house is calm, there is a storm raging just beyond the the window. The wind is blowing the rain hard against the window pane. Thunder shakes the house and the lighting provides a glorious show. There are birds hiding under our deck trying to find dry shelter and our neighborhood bunny who finds rest next to our pool is missing.

Many people fear these types of storms, but not me. They serve as a beautiful reminder of the past 3 years of our life and the storms we have been through. The storm right now came quickly, dark clouds filled the sky and made their way over our house. The rain poured down in buckets, thunderclaps were strong and the lighting flashed. But soon this storm will be over. The grass will be refreshed with a fresh drink, the flowers will stand straighter and bloom again. The clouds will roll out relieving the bright blue clouds and the sun will reheat the earth. The birds will fly again and the bunny will take it's spot in the yard..that is until the next storm comes and brings with it the rain that was so needed.

Yes we have had MANY difficult "storms" over the past 3 years, but just like any storm, the sun always came back out and we were strengthened and refreshed. Right now things are going great but I trust that a storm is lurking somewhere just waiting to move in and when it does we will be ready because we know the joy that lay on the other side!

Oh the places He'll go....

2011-08-17T10:38:00.000-07:00

"Oh the Places you'll go!

There is fun to be done!

There are points to be scored.

There are games to be won.

And the magical things you can do with that ball will make you the wining-est winner of all!

FAME!

You'll be famous as famous can be , with the whole wide world watching you win on tv...."

"Except when they don't, because sometimes they wont.

I'm afraid sometimes you'll play lonely games games too.

Games you can't win cause you'll play against you.

All alone, whether you like it or not, alone is something you'll be quite a lot.

And when your alone, there's a very good chance you'll meet things that scare you right out of your pants.

There are some down the road between hither and yon, that can scare you so much you won't want to go on.

But on you will go though the weather be foul.

On you will go through your enemies prowl.

On you will go through the Hakken-Kraks howl.

Onward up many frightening creek, though your arms may get sore and your sneakers may leak."

"On and on you will hike.

And I know you'll hike far and face up to your problems whatever they are.

You'll get mixed up of course, as you already know.

You'll get mixed up with many strange birds as you go.

So be sure when you step.

Step with care and great tact and remember that life's a great balancing act.

Just never forget to be dextrose and deft.

And never mix up your right foot with your left."

"And will you succeed?

YES!

You will indeed.

(98 and 3/4 percent guaranteed.)

Kid, you'll move mountains!"

"So, be your name Buxbaum or Bixby or Bray or

Mordecai Ali Van Allen O'shae, your off to great places!

Today is your day!"

"Your mountain is waiting, so get on your way!"

-a section of Dr. Seuss's Oh the places you'll go.

Under a rock

2011-08-02T16:10:00.000-07:00

Yes, we have been living under a rock the last few weeks...or months. Blogging has been the last thing on my mind. Things have been relatively boring around here and coming up with ideas of what to post have become increasingly difficult. Good thing I have some WONDERFUL friend who have been so kindly bugging me to get back into blogging. Good news, I am happy to be back and have been busy catching up on all your adventures! I can't believe how much your kids are developing and growing! It warms my heart! Speaking of growing....

Malachi with his best buddy Bryson while on vacation.

Another one from vacation.

Malachi enjoying some superman ice cream on his 3rd birthday.

Elijah enjoying the walker, yes he is getting close to doing it solo!

Malachi in the new swing set he got for his birthday!

Look at the attitude!!

And finally, Eli trying to copy his brother.

Malachi celebrated his 3rd birthday in July which ment we said good bye to all his therapists! However in less than 2 weeks, we say hello to his new school! So not ready for that but trying to focus on the positive. I know he will enjoy it and learn so much while he is there. When did my baby grow up?

Elijah is getting more and more talkative (yes i know this is hard to believe, he is a chatter box!) he is even starting to imitate sounds! He is all about gross motor right now which makes his OT curse like a sailor. He is a eating machine and recently surprised us all when he happily scarfed down feta cheese, raw tomatoes, raw green peppers and corn beef. He is the kid you invite over when you need to clean out the fridge! Tomorrow his is being evaluated for sure steps which means walking is right around the corner!

Josh officially got hired back to teach at the same school and the same grade! He is thrilled and I am thankful! He has been teaching summer school for the last 3 weeks and has a training all this week which means we haven't gotten to see him that much. School starts on the 15th but he has inservice stuff starting Wed. next week which leaves 3 more days with him home to help! I'm sure there will be a long honey-do list! :)

I am doing well. Trying to keep up with 2 lil men can be difficult but I LOVE staying home with them! I've been busy crocheting a lot. I've been seeing all these super cute kids hats and decided that I wanted to make some as well! I watched you tube videos and quickly got the hand of it. Now I'm a hat making pro if I do say so myself. But I have another post on that coming up later this week. I will leave you with a little teaser....

A newborn hat with ear flaps and a large brown rose! LOVE IT!

Making dreams come true

2011-08-01T05:01:00.000-07:00

Yesterday we had the pleasure of meeting Gary James from A4cwsn. He was in the midst of delivering Ipads when he decided to come to IL and meet up to personally deliver one for us! Here are a few pictures for ya!

If you haven't already, check out A4cwsn! You will be happy you did! Look for them on facebook too!!

Ps. I am not receiving anything for promoting Acwsn. Just passing along information because I am a mom who cares and wants to see more kids get this amazing technology!!

Quick update

2011-07-23T06:59:00.000-07:00

I talked to the doc last night. She feels its best to re-test in two weeks, if it is still low she will send him to a hematologist/oncologist where they will follow up. She assured me not to worry, that a low WBC count can be caused by many things, even something as simple as a virus. So for the next 2 weeks, we pray those WBC come up!

dont be alarmed....

2011-07-22T11:36:00.000-07:00

Tuesday Malachi went in for his 3 year well child check up while there his pediatrician was looking of the medical form needed for school. She was transferring information when she noticed that last time they did lab work Malachi's hemoglobin was on the low side, but still within normal limits. She decided she wanted to order a CBC and a bunch of other blood work. Didn't think to much of it. I love that she is proactive and wants to make sure everything is perfect with Malachi.

Today I get a phone call from the nurse telling me they refiled Malachi's reflux meds. While I had her on the phone, I asked about his lab results. His t3 and tish were normal, some things were pending and she said "oh, his which blood cell count is low (2.9), I'll have the doc call you and see what she wants to do next." Freak out ensues. I've spend the last 30 mins on line research what low WBC count's could possibly mean and Im not liking what I am reading. Ugh. Im still waiting to hear from Dr. M but I am worried!!! Please leave me your thoughts, especially from mom's who have been down the cancer road with their children!!!! Im a mess.

Ipad?

2011-07-18T16:24:00.000-07:00

With all this Ipad business going on, I feel the need to do a post. Recently Malachi won an Ipad from a4cwsn. We are so excited! Malachi has 2 verbal words, yes and no. He does sign but is extremely limited by the weakness in his right arm from his stroke. Although he has made GREAT improvements over the last year and a half, he is still unable to rotate his wrist, isolate fingers and is often unaware of his right arm completely. Another side effect from his stroke is lack of anger management and we see this come out when he cant communicate his wants and needs with us. He hits, pinches and pulls hair to express his frustration. I completely understand how he feels, because I too get frustrated with him for his behavior. At the same time I understand why he is so angry, I would be to if I knew what I wanted but had no way of expressing it. So this Ipad will truly be a Godsend! We can't wait to work with Malachi's speech therapist to figure out which communication app will best fit his needs. He will also be on a picture schedule at school which there is an app for. We are honestly so thankful to a4cwsn and this gift they are giving us!! Our lives will change for the better, Malachi's life will change for the better and there are no words to express what that means to us!

Please got check out a4cwsn.com.Gary does an amazing job at reviewing educational apps, special needs apps and communication apps. Many of these reviews are done as a video so you can see how it works before you buy it! You can also apply to get an Ipad of your very own!! There are some exciting things coming up, so while you are at it check out a4cwsn on facebook! There you can see pictures of children who have already received their Ipads, get codes for free apps (Gary often posts free codes, but you have to be quick, they go fast!) and you can meet thousands of other parents who are full of knowledge!

Please don't let one bad apple ruin your faith in others. Give a4cwsn and Gary a look, you will be happy you did!

Gone, gone and Gone

2011-07-10T12:49:00.000-07:00

Yikes, it's been way to long since I posted! Please forgive me. It is summer after all and that means craziness for our family! We were in Boston for a week at the end of June, came home for a week and then spent the next week in Door County, WI. The boys are crazy due to no scheduled, I am tired of living out of a suitcase and Josh has had enough of sleeping on strange beds. At last we are home!! Thank God! Now to catch you up on all thats been going on the last few weeks.

Malachi won a Ipad from A4cwsn.
Elijah is cruising along furniture and will be fitted for SMO's soon.
Josh got hired back. Praise God.
My car broke down while we were 5 hours away from home but it was fixed in 3 days for only $160.
The boys LOVE the sand, I however do not.
Malachi aged out of Early Intervention and we said good bye to all his therapists. It was a sad week.
Elijah started signing milk and more.
Josh, Malachi and I all celebrated birthdays.
My yard is still full of weeds, leaving us looking like the trash of the neighborhood.
Our pool is still green, I hope we get to swim in it this summer but i am not holding my breath.
Our flight home from Boston was canceled but they did book another flight which took us to Miami and then home to Chicago. 6 hours on the plane, how nice of them!
The boys were on the news...yet again.
Malachi played at the park with little assistance from us.
Elijah still eats everything in his path and has started to gain some weight!
I've been crocheting and have created some really cool things. Esty is in my future!
I have so much laundry in my laundry room that I can't even shut the door.
Last but not least...every single one o Eli's medical bills has been paid!

That is all for now. I promise the next post will be soon!

3 Cheers!

2011-06-23T15:55:00.000-07:00

We got the best news EVER this past tuesday! We were in Boston for Malachi's one year follow up to his Pial Synangiosis procedure. This surgery was VITAL to Malachi and his future. Pre-surgery his risk of stroke was VERY high (I was told it was more likely that he would have another than not), if not corrected the blood flow to his brain would get worse and worse eventually causing him to die. We knew the importance of this surgery and that without God's grace and the hands of a skilled and world renowned surgeon, his fate would be dismal. Early tuesday morning my sweet lil man was put to sleep for a cerebral angiogram. The Interventional Radiology team at Boston Children's Hospital inserted a catheter in Malachi's groin and ran it through a major blood vessel to the base of his brain. They then injected dye and watched it flow through the blood vessels in his brain. And flow it did, all over that brain of his. The re-routed temporal arteries stitched directly to his brain grew and grew. Now healthy vessels encompass his brain providing a healthy amount of blood to all areas. His risk of stroke is at 5%...5% that's all! Dr. Scott said the results were more than we could ask for and quit possibly the best he's ever seen. Yet another miracle God has worked in our son. We have few words that express our gratitude and even less that seem fitting enough. We are overwhelmed with gratitude to those who cared for Malachi while he spent time recovering from his stroke and surgery in 4 different hospitals. All the nurses, doctors, and support staff who used their God given talents and knowledge to provide Malachi with the best possible care. To our family and friends who have held our heads up when we were to weak to, who encouraged, listened, prayed and loved on us unconditionally, we are forever indebted. The smile on Malachi's face, the strength of his hug and the joy in his laughter is all because of you! I can't imagine walking this path with anyone else.

Perfection!

2011-06-05T06:50:00.000-07:00

We have Malachi's IEP on Friday and I am happy to report it went amazingly well! We thought all of the purposed goals were appropriate and that they were truly looking out for what is best for Malachi. He will be getting 30mins of OT, 30 min of PT and 90 mins of speech a week (in addition to what we decide to supplement outside of school), once a week he will have inclusion for gym and library time. They also mentioned a possible need for a assistive communication device, so they wrote that in as well. And the best news of all...there will only be 4 kids in his class!! That is it! We live in a VERY small district (The entire school only has 120 kids) , which I LOVE! So all in all, it wasn't nearly as bad as I expected it to be. I would even venture to say it was as close to perfection as we could have been! In a month we will go and register him and then a month after that he will be getting on that big bus and off he will go. I better stock up on Kleenex now! My baby is growing up!

Away we went

2011-05-31T16:59:00.000-07:00

Destination: Wisconsin Dells, WI

Purpose: To spend 3 whole days enjoying all that the Wilderness Lodge had to offer.

Activities: Swimming, swimming and more swimming.

Please check out Elijah. He quickly learned how to escape!

It was so nice to celebrate the end of Joshes school year (yes they are out crazy early this year) and Memorial Day with our good friends (Thanks Maugers)! We can't wait to go back!

Now that our first mini vacation of the summer is over, it's time to get into gear as we prepare for Malachi's first ever IEP! Friday is the big day and to say that I am worried is an understatement! EEK, I still can't believe this is happening, in August I will be putting him on a big bus and sending him to school! It honestly seems like just yesterday I was rocking him to sleep while singing "you are my sunshine", who am I kidding I still do it on occasion but now he actually claps for my less than stellar singing! ha I know these fears are normal, but seriously, he can't be old enough for school! I got his evaluation reports in the mail last week. It was so difficult to read over them! Ugh. I cried and cried. I don't like reading that my son is "severely and profoundly delayed" in expressive and receptive speech. Don't these people know what he has been through? The fact that he can make any sound at all is remarkable let along that he can walk, jump in the pool, and sign over 30 signs. Why don't they see this? Why is it always the negative? I know this meeting is going to be difficult, these strangers don't know Malachi like I know him. They haven't been with us on his journey to see his progress, all they see is what he is not doing. But they will in time and just like all the other hearts Malachi has touched along the way, they too will, will carry with them a special place in their heart that only Malachi can inspire!

It's all about family

2011-05-18T16:50:00.000-07:00

New family pictures! Which do you like the best? I am in love wit them all!

For your viewing pleasure!

2011-05-13T13:53:00.001-07:00

That is all. :)

For your viewing pleasure!

2011-05-13T13:52:00.000-07:00

That is all. :)

2011-05-10T13:29:00.000-07:00

Malachi can do a somersault. Alone. With no help. The first time I saw him do this, I was in awe. We've done them a few times with help, but never did I specifically each him. And then it happened. He stood up, put his head on the ground and tucked into a perfect little ball and rolled right over. He erupted in laughter as he stood up an did it again. 13 times he did this, laughing uncontrollably. I sat on the floor no more than 3 feet away with tears running down my cheeks. I realized at that very moment that he is capable, so very capable, of doing it on his own without my help. It was like a picture of the future cause I KNOW the day will come where he can do it all on his own and I will be sitting 3 ft., 3 blocks or maybe even 3 miles away crying for the exact same reason. He can do it all on his own, he will do it on his own and I cry tears of joy because of it!

In awe

2011-05-08T16:37:00.000-07:00

Yesterday could have been a tv show. High school kids and their teachers putting together an afternoon of fun to raise money for a complete stranger. This said stranger had some substantial medical debt. This afternoon was no different than the 10+ years previous, except this year the recipient was us. It started way back when my husband attended High school, a girl in his class needed a double lung and heart transplant. Her parents were up to their ears in medical debt so some fellow classmates decided to host a fundraiser. The money raised would not only help pay medical bills, but also give her parents the ability to continue to fight. An amazing afternoon was formed and people showed up to give. While Anna (name changed) passed before she could receive her transplant's, the family continued to fight for others who were struggling with medical debt of their own. Each year since the initial Anna-a-thon (the name of the actual event) this high school has found a family (somehow connected to the high school) to help.

Last year someone put our name on the desk of the teacher in charge. Thus began a series of event's that only God could orchestrate. This small piece of paper was found again this year and we were contacted. A few months ago I got a phone call and was told we were chosen to be the recipients this year. A wave of disbelief, confusion, gratitude and humility washed over me. This truly was an answer to prayer. We have substantial medical debt from all of Eli's shanannigans and the notion that it was going to be taken care of was amazing. Im still in disbelief. We have been so blessed by family and friends in the past (the benefit to raise money to get us to Boston for brain surgery, prayers, help with hotels when the boys had heart surgeries) and yesterday we were blessed by complete strangers. The day was a blur but when we got home last night, I was able to think about the events. I began to cry in amazement at ALL of the blessing we have received while on this adoption journey. I knew taking 2 boys with special needs would be difficult, I stressed about the unknowns, the financial aspect and the what if's. But what I didn't know is the amount of love, grace, acceptance, encouragement, peace and love we would receive. With Josh's job still up in the air for next year (yes he got laid off, he is a teacher, in Illinois...enough said) we were really stressing about these bills...Praying about when we should pay, how much and which ones got paid first. We were worried about not being able to pay them at all and in a matter of 2 months God has completely wiped that stress gone. Wow. I am speechles. I am humbled and I am full of overflowing gratitude. Seriously, with tears running down my cheeks (lets be honest, it a straight up ugly cry), I am thanking all those students, teachers, family and friends who came out yesterday. You inspire me to do more, help more, love more, give more, encourage more, thank more and trust more. God you truly are almighty, willing to save and the provider of all things!

Lost in the hustle

2011-05-07T16:58:00.000-07:00

I have been busy cleaning, baking, shopping and cooking in preparation for tomorrow. We have a house full of people coming over to celebrate Mother's day and I want everything to be perfect! For those that know me, I get stressed easily, especially when there is people depending on me for something. This is not one of me best traits, I know this but despite my best effort to change, I almost always revert back to my crazy self. In the midst of list making and bickering with my husband I realized what today it. For many it's just another day, but for us it's special. The day before Mother's Day is always Birth mother's Day! How could I have forgotten? Rather than beating myself up about it, I decided to take time for my preparing, to write about how much my children's Birth Mothers mean to us!

When I think about the definition of courage, I think of Eli's birth mom. Although we have only met her once, her gentle demeanor, soft words and abundant tears spoke to my heart. I will remember our meeting at Panara forever. We walked in with our adoption agent, photo album full of pictures (that expressed the love of our entire family) and a heart aching for these strangers. The decision they were about to make was so monumental I can only imagine the weight on their shoulders. Soon after getting settled, away from others, Eli's birth parents walked in. I knew within seconds that his birth parents loved him more than words could express. We talked about our family, our jobs, our decision to adopt kids with Down syndrome. We asked questions, they asked questions and we all cried. At the end of our meeting, Eli's birth parents decided that they wanted us to raise him. They went out to the car and brought in bags of Eli's belongings, saying "we want him to have his things." My heart broke in a million pieces. The pain in those words were very apparent even though they knew what they were doing was the right decision for them. A week later we brought Eli home. The amount of gratitude we have can never be expressed enough. Because of her sacrifice, I am able to celebrate Mother's Day tomorrow. Because of her courage, Elijah is thriving and because of her love, we are able to love our son. Elijah will never fully understand how blessed he is to have the unconditional love of 2 mommies!

I think about Malachi's birth mom often. He came to our family through foster care and while I can't tell the specifics on why was was taken from his mom, I can tell you that he can from an unfit mother. I can only guess how her heart broke when she got the news that she would not be leaving the hospital with him. I've never met her, but I know she loved him. A mother always loves their child, regardless of her ability to care for them. Her inability to parent, gave me a chance to and for that I am thankful. I do not agree with her choices in life, but I am soooo thankful she CHOOSE to have Malachi. Life would not be the same without him!

So thank you to all the Birth moms out there, who have given us the chance to be moms's! We don't say thank you nearly enough!!!!! Happy Birth Mother's Day to you!!!!

My little superstars

2011-05-06T06:06:00.000-07:00

My children could not be more different. Elijah is calm, cool and collected. He is happy playing by himself and rarely get's upset. He is the happiest lil man who finds great joys in bouncing his legs to music. He is a lovely child and is turning into quit the ham. Elijah LOVES to eat...anything...and thinks every time we sit down at the table that he will be able to stuff his face. He is easy going and rarely gets upset. He is a listener and follows the rules. He has always been the easiest child and I don't foresee that changing.

Malachi likes and needs all the attention. He will hit, pinch, slap and lick if he feels he is being neglected. When he is hungry he obsessively signs eat on him self, on me, on the dogs until we put him at the table. I kid you not, 10 minuets after he is done eating, the cycle repeats. Malachi is as smart as a whip, a sign language extraordinarie, gross motor driven and the absolute nastiest and sweetest boy all rolled into one. He is able to push buttons I didn't know I had and then 2 seconds later he will wrap his arms around me in the best bear hug ever.

All this to say while we were at dinner last night, my children put on their own little variety show. They had the ladies in the booths all around us laughing and commenting on their cuteness. No one asked about their small size or the fact that Malachi is still eating baby food at almost 3 years of age. No one asked about the scares on Malachi's head. And believe it or not no one asked if they were twins (yes, crazy as it seems I get asked this alll the time! Seriously...ummm...Malachi is black, Elijah is not...hmm?) It was just 2 children, with personality abounding. At that moment, I saw the future for my children. Acceptance, Love, understanding and inclusion. They were not looked at because they are different but rather because they are the same. Just 2 little men who wave, clap, show their muscles, high five, laugh, smile, shake hands, sing and give knuckles. They may be behind, slower to reach milestones but they can quickly capture the hearts of those who choose to look past Down syndrome. They are superstars, who spread light where ever they go. So thankful that they are mine!

Somewhere far far away...

2011-04-20T06:41:00.000-07:00

In a orphanage, far, far away sits Ali. At 5 years old she should be preparing for kindergarten, but there she sits, alone, wondering if she will ever have a mom and dad. This is her sweet face.

"Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly: defend the rights of the poor and needy." Proverbs 31:8-9

Ali was born with a cleft lip (has been repaired) and she is HIV+, she will die in an institution if not adopted. Here is where we come in. I have special place in my heart for this sweet girl in piggy tails. I have committed to pray daily for her and to help raise $5,000 to her adoption fund. Could you join with me in prayer? Could you donate so that the financial burden of adoption could be eased for her future family?

"Anyone who welcomes a little child like this on my behalf, is welcoming me." Matthew 18:5

Please visit this page and donate directly to her adoption fund. Right now, there is $15 in it. I am praying to see $500 in it by the end of the month!!

"Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you." James 1:27

Her clock is ticking, her time left in a orphanage is limited. Tonight when you tuck your children into bed, remember this face:

Somewhere far far away, Ali goes to be tonight waiting for a mom and dad to kiss her good night!

Reunited

2011-04-18T18:51:00.000-07:00

This past Friday we went to a Easter Party at Gigi's Playhouse (A down syndrome awareness/education center). It had been a few months since our last visit so the boys had a blast playing with friends and running around. Malachi was also reunited with Ava, his girlfriend and one true love! We met Ava shortly before Malachi and Ava turned one. Here is a photo progressions of their reunion!

So good to see you Malachi!

You too Ava, I have missed you!

Let me get a good look at you!

Your beauty knocks me off my feet!

Mom, get a picture!

It's been to long my love.

A kiss?

How about a French kiss?

Malachi! Our mothers are watching, lets keen this PG.

Reunited and it feels so good!

A BIG think you!!

2011-04-05T19:30:00.001-07:00

A year ago today, we were sitting in the hospital worried about Malachi. He had just suffered a MAJOR stroke and his future was so unknown. We cried, we prayed, we worried and we trusted that God would guide our journey and protect our sweet boy. In the weeks that followed we were surrounded by prayers from friends and family. We stayed focused on his recovery and continued to believe everything would be okay.

Today I am so happy to report that Malachi is not only doing well, but he is thriving! He continues to fight and works hard to improve the movement in his hand/arm (This is the only place we still see effects from the stroke). He recently had an MRI to evaluate the progress since surgery in June. The doc. reported that things look well and there are new blood vessels forming from the transplanted superficial temporal artery! This is the best possible news for Malachi and our family. The more these vessels grow, the less likely he is to have another stroke. We are beyond grateful! It is a true miracle that God chose to work in our son! There are truly no words to express the joy in our hearts. We are preparing for our final trip to Boston this summer where Malachi will have another Angio and the final success of the surgery will be measured. We have no reason to doubt that these next results will be anything less than perfect! God is so good!!

So today, I am not writing this nearly to update you but rather to express our extreme gratitude to each of you! We honestly could not have done this without your support! Each one of you has walked this journey with us...crying, laughing and worrying. Some of you made meals, others prayed for us, you sent cards, email and text messages, you sat with us while we shared our fears and held our hands while we waited for answers, others watched Eli so we could be at the hospital, Co-workers wrote lesson plans while Josh was out, and most of you gave financially so that we could go to Boston and have the life saving surgery done by the worlds best surgeon. Thank you will never be enough! I wish I could repay you for the gifts that have been given to us this past year I would, but there is nothing in the world that holds enough weight. But please know that each time Malachi walks up to us, a big smile on his face, wraps his arms around us and gives us the best hug in the world, I think of you! It's because of your faith, your prayers, your hugs and mostly our almighty God, that Malachi is here today!

So from the bottom of our hearts....THANK YOU!

Erin, Josh, Malachi and ELijah

Spring has Sprung...almost

2011-04-04T06:49:00.000-07:00

We have fully taken advantage of the nice days here, although they are few and far between still. We've gone to a few parks, blown bubbles and even flew a kite! We are so ready to the weather to warm up, the grass to turn green and the flowers to start growing!

2011-04-01T18:14:00.000-07:00

A few months ago Elijah decided he HATED baths. The look on his face when you brought him anywhere close to water was that of sheer terror! We have been bathing him in the sink ever since. Tonight we decided to try bath time in the tub again....and this was the result.

This is the Eli we have been missing! Splish splashing all over the tub! I am so thankful our little water bug has decided to swim again!

A hot mess

2011-03-25T11:47:00.001-07:00

Seriously this blog is a hot mess. This is what i get for trying to re-do it by myself. Ugh. I've decided to pray someone to fix this mess. Please be patient with me while this gets fixed.

Just cant

2011-03-24T17:41:00.000-07:00

This week has been some what of a difficult week for us. For those of you that don't know, the state of Illinois is in some serious financial trouble (only slightly better then California). The state owes many school districts money, lots of money. In one district alone it is well over 13 MILLION dollars. Without this money, school districts are in financial trouble and willing to do drastic things such as, lay offs, cuts in electives, cuts in special education, entire schools being closed and so on and so forth. The district my husband works in is no different. We thought he was safe after all hes been teaching for 6 years and been tenure for 2. Perhaps the shock is of our own doing, I didn't realize it was that bad, I didn't want to believe it but last night at a public hearing we got to hear it all. Thousands of people showed up to have their voices heard. Students chanted, teachers chanted and parents joined in all with the hopes that teachers would be spared and electives would be saved. Inevitably the board did what they had to do to balance the budget and voted to lay off all 1-4 year teachers and RIF (Reduction in Force) 5-7 year teachers. There was disappointment, people crying and a room full of people completely stunned. Josh has been teaching for 6 years which means he too was cut. We are hoping and praying that other cuts will be found and made so that some of those teachers (including my husband) can be called back next year. We are obviously worried but are also trusting that God will provide. Ill keep you all updated in the weeks to come.

I just can't wrap my head around this.

Woops

2011-03-17T12:39:00.000-07:00

I apologize for the last post. I thought I saved it as a draft....but apparently not. Woops.

Anyways...We had Malachi's appointment yesterday with the GI specialist. He said that since his liver function was all within the normal limits, there is really nothing we can do now for the Hep C. He did drawl more blood to test it again so we will see if he gets another positive results or not. If it is positive, we will continue to check his liver enzymes every 2 years and until we see his liver function decrease we will do nothing. Usually Hep C complications will not show up for 20+ years.

This weekend we will be joining our new PT at a NDT training. She asked if Elijah could be her model for the day! hehe, we get to spend an hour therapy session with our PT and the speaker at the conference. Very excited about it! There is also talk about getting Eli a Benik Vest since he struggles with supporting his trunk. We will be trying it in PT on monday, if it seems to be helping, we are going to order one!

On a side not, Ive been horrible at taking pictures lately. My mission tonight is to get some good ones of the boys!! Hope you all have a wonderful st. Patties day!

Odds and ends

2011-03-14T15:54:00.000-07:00

Malachi has had 2 aqua therapy sessions thus far and it's safe to say he loves it. It's really amusing to watch his little self working so hard splashing about in the pool. It's a great workout and he leaves exhausted.

In the past week we have fired our old pt and started with a new one. She is great with the boys which is something out old pt was lacking recently. I'm looking forward to getting some fresh ideas and some new things to work on with them.

Wed this week we are heading to Madison to see the GI about malachi's hep c. We are praying for answers about his constant reflux as well.

Elijah is officially pulling to stand which is so exciting. Our new pt is talking about possibly getting him a brace for his core as he seems to have difficulties strenthing his tummy muscles. She also thinks we should get his sure steps ordered. I am not ready to have a walker and a pre walk. To say my life is about to get busy (actually busier) would be an understatement.

On the 29th Malachi will be going in for his first sedated MRI/mra since surgery this past June. They will be looking for new blood supply and at the arteries they stitched to his brain. Please be praying that things go smoothly and that we get the results we want. This will be our first look at the glance at the new blood supply to his brain, obviously we are pr

Heard it everywhere....except here.

2011-03-02T12:54:00.000-08:00

I've heard it everywhere. The doctors office, the playground, on the phone with a friend, posted on Facebook, in movies, in music, on tv. Iv'e seen it printed in books, magazines and newspapers. I've even said it. The r-word is carelessly strewn about in our everyday language that most people don't even think twice. I was the same way. Trying to justify my reasoning by saying "I didn't mean it that way." But all that changed when I became a mom to a child who has Down syndrome. The first time I held Malachi, I fell in love. His sweet little face, tiny hands and almond shaped eyes were almost to much to bear. He was the CUTEST lil' man, I couldn't get enough of him. To this day, I am drawn to his smile, his snuggles, his courage and strength. It is no different with Elijah. Before we brought Eli home, I questioned whether or not I could love him as much as his brother and the first time I held him, my fears were cast aside. My boys are my heart, my tangible gift from God. I strive to provide them with a home that will encourage, strengthen, love, satisfy, and protect. I surround them with people who love and cherish them. I pray that they will be included in church activities, that they will put all their faith in God, find joy in everlasting friendships, fall in love, hold successful jobs, be surrounded by friends who accept them and that their hearts will be protected from this world. A world where appearance, ability and social status is , what you are judged on rather than your heart. You see, my children will never steal your child's lunch money, they will never laugh when you answer a question wrong, they will never dislike you because your pants are to short, they could care less about your hairstyle or the car you drive, they wont judge you by the size of your house, they wont steal your girlfriend and they will never call you a name. I can tell you that if you open your heart to a child with special needs, you will be taught lesson after lesson on strength, courage, unconditional love, acceptance, encouragement, loyalty, humbleness, peace and kindness. The list really could go on and on.

So let me ask you, do your children say the r-word? Is it allowed in your house, on your basketball team or in your classroom? Do you yourself use the r-word? Please know, that when you use that word you are making my children seem less than. You are belittling a Child of God, whom He created perfectly. And above all you are hurting their feelings and my feeling and the thousands of other people out there who are living or love a person with an intellectual disability.

Please join the cause and spread the word to end the word by visiting R-word.org and sign the pledge. Help us educate our communities and create a place of acceptance when my kids can go to school without fear. Do it for Malachi and Elijah, do it because you love us and do it because its the right thing to do.

Feast your eyes on this

2011-02-25T12:41:00.000-08:00

My little man is growing up right before my eyes!! And ladies...he's single!

I fail

2011-02-23T16:50:00.000-08:00

This re-do of the blog is harder than I thought. I had big plans to re-vamp things and I have failed miserable!! Blah. I need to help, can anyone point me in a direction? PLEASE HELP ME!!

Under construction

2011-02-13T13:48:00.000-08:00

Please pardon our dust. Over the next week I will be teaching myself how to spif up the blog design. Please bare with me while I work out the kinks!! I am looking forward to a fresh look that will tantalize your eyes! Please stay tuned.

Oh yea, if you have any helpful tips, please leave a comment! Gracias. (If that is spelled wrong, blame my husband!)

A, B, C...yeah C

2011-02-11T15:36:00.000-08:00

I've got good news and bad news. Which would you life first?

Okay, Okay...I choose good news first.

Malachi's liver is fine. Around of applause please. His labs also showed no signs of Hep. B. Yes, thats what I like to call a double whammy of good news.

Bad news. His labs showed that he is borderline positive for Hep C. Two thumbs down, way down. So what do we do next? Normally we would get a referral to our favorite hospital to see a specialist but the said hospital no longer takes Malachi's insurance. So we chose a new hospital in the big city, the only one we have NEVER been to but have heard wonderful things about. We are waiting for a referral to go through to a new GI who will not only looking into the newest issue but also work with Malachi on his other GI issues. I was informed that more in depth labs will be drawn to either confirm or deny Hep. C.

See the yellow? Ugh. I.NEED.A.VACATION!!!!!

Always something

2011-02-09T16:48:00.000-08:00

The boys had a duo cardiologist appointment yesterday. Both the tickers are doing great and we don't have to go back for an entire year! Sounds to good to be true right? I'll answer that for you, yes. While there, dr. F pointed out the fact that Malachi looked unusually yellow and that we would get him to the pediatrician asap. We went today.

Malachis face, arms, legs, feet and the whites of his eyes are yellow. I kept telling myself this was some awful trick but it's not. Malachi is yellow. So began the hustle and bustle of the nurses trying to get all the paperwork together for the large amount of labs to be drawn. The reason for the yellow invasion? Liver disease, hepatitis b or c and a long list of works I can't say or spell for that matter. 3 sticks later and lots of vials, they finally have what they need.

Now we wait and see. My stomach is in knots, I'm worried and scared. This could be serious, very serious or it could be nothing. Can't he ever get a break? Seriously.

Where is my glass of wine?

Snomagedon

2011-02-02T11:23:00.000-08:00

We were blasted...smacked in the face by the fourth largest snow store in Northern Illinois history. I believe 14 inches is the latest total but it is expected to climb higher. The real doozie? Sustained wind at 25mph with gusts up to 77mph. A blizzard? I'd say so. Everything is closed today. Even if things were open its not like we could drive anywhere. Snow drifts up to 6ft tall, plows getting stuck and every single road in our entire county is closed. This is the Blizzard of 2011.

Preparing for...

2011-02-01T15:27:00.000-08:00

Snow, snow, snow! We are being slapped with the biggest snow storm since 1979! And let me tell ya, the snow of '79 was a doozie, even though I wasn't even born yet! Haha, did I make you feel old? Let's get on with things...it's snowing, a lot and very windy. My husband has a snow day which means I have an excuse to be lazy, sleep in and not change a single diaper! I'm dreaming, but he does have a day off! If you don't hear from me for a few days come looking for me. It most likely means we have lost power, ran out of food and stuck in our house! This storm just may be the end of the world as we know it, or not. Either way I'm gonna make like a bear and hibernate!

Kind of a big deal

2011-01-28T08:30:00.000-08:00

I've known for a long time that my husband is kind of a big deal. Lets face it, he is the complete package! Not only is he smart as a whip, sarcastic, loving, caring, genuine, sweet and oh so funny but he also loves children! Can't get much better, seriously.

So a few weeks back when he came home from work and told me that his principal (yes my husband is a 6th grade teacher) had nominated him for the Chicago land Golden Apple Award, I was over the moon. Because along with that long list of wonderful qualities mentioned above, my husband is the worlds best teacher! And now there is a chance for the world (or just 4 counties in Illinois) to know that he is a big deal!

Golden Apple? Yeah I had to look it up too, you know, for the specifics. I had heard of it before and knew it was a honor but didn't fully understand. Lets just say it's equivalent to the gold medal for the Olympics or the Moon man for MTV. Okay, not really, but its a close second!

So why is my husband the best teacher? The list is long so I will only share a few...

*All his students have his cell phone number. They can call whenever for whatever and Josh always answers it.
* College is talked about daily and a pact is made that if they graduate college, Josh will be at there.
*At the end of the school year he takes his students on a day trip to Chicago at no cost to them.
*He dances, sings, plays jokes and laughs with his students.
*He attends choir, band and orchestra concerts for current and past students.
*He calls home with good news.
*He shares his family with his students. They know us and love our children.
*He teaches them how to be a contributing member of society.

Josh is the best teacher and deserves this award!!! Looking forward to encouraging him along the way!

Oh yea and if he wins? He will receive a semester paid sabbatical to take classes at Northwestern University for free AND a monetary gift. He already knows that if he wins, we are going on a vacation!! Hehe

Way to go Josh!

PS. He is going to KILL me for writing this because he is humble beyond belief!!

Ready or not

2011-01-25T17:43:00.000-08:00

Elijah is a man of many words...err..sounds. Yes, a man of many sounds. He enjoys hearing his own voice, but let's be honest what man doesn't? When I try to have a serious conversation with him about his future he laughs. When we discuss his stubbornness in areas of weight bearing onhis legs, he quickly crawls away quicker than I can say...fill in the blank. So imagin my surprise this evening when he crawled over to the couch, put his hands up on the cushions and pulled himself to his knees....okay, I confess he's been doing this for a while. But the real kicker? I picked him up, put him on his feet, and there he stayed for nearly a min.! What the !&$@...? I questioned the little stink and he confessed, in his own jibber, that he's been holding out on me. He repeated this great feat many times before the sandman called his name and I realized this is the begining...not sure if I am ready. Yes, I know these things happen, children grow up, learn to walk and get attitudes. However, I'm so not ready to have a walker and a almost walker. For my sanity, I beg you Elijah, please stay little, mommy is not ready to be chasing two monsters around the house!

Ps. In the next year, if I ever hint about wanting another child, smack me in the face...hard, very hard! Pretty please?

A lil' story for you

2011-01-22T19:43:00.000-08:00

On wed. Elijah went down for a nap.

2 hours later he woke up crying.

I noticed he was having difficulty breathing (through the monitor).

Ran upstairs. Saw his lips were blue.

Picked him up, gave him a few puffs of Malachi inhaler.

Ran him into Malachi's room and threw the oxygen on him.

Called my dad to come over to watch M.

Elijah's color returned rather quickly. Brought him down stairs.

Ran to the garage to start my car, realized my keys were lock inside.

With no extra key around, called my dad back and said I was going to take his car to the er.

No wallet, no insurance card, no drivers license.

"SHOOT! No car seat! Im gonna call 911."

"Wait, he still fits in the infant car seat"

Ran down stairs, got the car seat, put Eli in it.

Drove to the ER.

Got to the ER, they checked his O2.

100%

Ugh.

Don't know what happened but they didn't believe me. After 4 hours, a breathing treatment and a chest x-ray we were discharged. The next day I took him to our pediatrician. She said he was very weezy. She gave him breathing treatments, inhaled steroids, oral steroids and something to dry up his boogies! Illnesses creep up so quickly on my kids and this is a perfect example.

PS. Today is Elijah's gotcha day!!! We love you lil' man, more than you could ever know! Thank you for keeping us on our toes!! We are so blessed to call you son!!!!!

A Little of this, a lot of that

2011-01-12T13:24:00.000-08:00

"Geez lady, why don't you post some pictures of those cuties you talk so much about." said my anoying but oh so lovable friend. (She knows I luv her dont worry!)

Her wish is my command.

Now introducing the 2011 versions of Elijah the awkward laugher (this is an ability that i shown best in the car when josh and I are having an A and B conversation and Eli C's his way right in) and Malachi the monster (it's true and those of you that know him on a "personal level" know that his wondering hands like to get into all sorts of trouble)...

Christmas Morn, doesn't everyone wear their pants on their heads?

Nothing like a ride in the shopping cart

Don't let my smile fool ya'

Ah yes, nothing like a little binkey snaching and toy hitting caught on camera!

I tell ya lady put that dang thing away!

Let me spit shine it for ya dad!

A little tent camping anyone?

How about a nice row in my boat? If only Goliath next to me would share the oar! (Ps. this is Malachi's bff. please note Malachi is a month older)

Here fishy fishy, perhaps a little smack on the glass will get you out?

Mom it's really mean to take pictures of me trying to poop.

Thats what we have been up to. Happy now?

Where everybody knows your name...

2011-01-10T17:19:00.000-08:00

Now that I have the Cheers song stuck in your head...your welcome.

This past weekend was amazing! Our wonderful friends were in town for California, we saw another friend marry her now husband who can here from Kenya and the newest Gigi's playhouse opened!

We spent the morning and afternoon at the playhouse making new friends, visiting with old and getting interviewed for the news paper and the local news. It's an amazing place and something we are so blessed to have so close to home.

For those of you who don't know what Gigi's playhouse is here is a little in for for you. The playhouse was started 6 or 7 years ago in Illinois. The first playhouse was opened as a down syndrome awareness center. It provided tutoring, play groups, opportunities, classes and education for people with down syndrome. Today the playhouse location has multiplied and can be found in 5 Illinois cities, in Iowa, Atlanta and new York. Wowzers! Todays playhouse is much the same with the addition of new classes and new opportunities.

What makes the playhouse so special? For us, it's a place we can take our children where they will be accepted, understood, encouraged, challenged and loved for simply being themselves. There is no other place like it. We are excited to get involved, make new friends and educate our community.

Check out the website and consider opening one in your community.

Chalk another one up for Down syndrome

2011-01-07T07:08:00.000-08:00

Idiopathic hyperthyrotropinemia. Early hypothyroidism. Pediatric Endocrinologist. Dang Down syndrome.

On a regular trip to the pediatrician, I decided to have her check Malachi's T4 and TSH. Why? Because I've become obsessed with researching common medical conditions associated with Down syndrome and hypothyroidism has appeared on every list. She (the doc) thought I was crazy for wanting her to order a blood test when he was experiencing no symptoms, but I insisted and she obliged.

Fast forward a few days later...

My phone rang, I answered it.

"Mrs. H? "
"Yes" I reply.
"Malachi's T4 and TSH came back."
"Oh wonderful, what were the results?" I questing, expecting good news.
"Well...His T4 is lower that we would want, but still with in the normal range."
"Great!"
"But his TSH is high and I am referring him to a pediatric endocrinologist. I dont know how you do it, but your intuition is amazing"
After a little more small talk, she hangs up the phone.

My intuition is amazing? I was wishing it wasn't so but the truth is, it is. Humble, I know.

As is a pediatrician, GI, Neurologist, 2 neurosurgons, an eye doc and an ENT isn't (lets not forget OT, DT, PT and ST all weekly) enough to keep me running all around northern Illinois and souther Wisconsin, lets add in another doctor.

Much to my surprise Dr. C is amazing, and agreed that treating Malachi with medication is the best possible answer.

Welcome Levothyroxine, you join a long list of medications my 2 year old has been on. Sounds like you will be around for life, welcome aboard!

This wonderful meeting of DR. C was on monday.

On Wednesday, we took another trip back to the pediatrician. This time it was for constipation and reflux.

While there, Malachi was put back on reflux meds and BOTH boys were put on miralax. This time, Dr. M suggested we test Elijah's T4 and TSH.

I also asked for neck Xrays for the boys.

Thursday I got another phone call from Dr. M.

"Hello Erin?"
"Yes Dr.M, nice to hear from you, Im assuming you got the results for the x-rays and lab work?"
"The x-rays were not accurate, Im going to refer you to the hospital to have them re-done."
"What about Elijah's blood work?"
"Well Erin, It looks like Eli will be joining Malachi at the Endo. His T4 was normal and his TSH is high. Actually, its higher than Malachi's."

Another one bites the dust.
Chalk another one up for Down syndrome.

So what if?

2011-01-06T15:58:00.000-08:00

Consider this senario with me...

A husband and wife gather their family together to tell them the good news. After years of trying they are finally pregnant! Their family is bursting with joy, they know this has been a long journey. Soon after the announcement the questions begin...

"how far along are you? When are you due? How are you going to fit in that small house? Do you know the gender?"

Their responses are typical...

You make think this is silly, perhaps it is. I was talking to a friend the other day who is currently pregnant with her first child. They had been trying for a while and finally they got to announce that she was, in fact, pregnant. I have never gotten to pee on the pregger stick or announce to the world that I was carrying a new life in my bellie but I am the mom to two amazing boys I have felt the joy in bringing them home for the first time and the excitement in introducing them to our family.

Back to my friend...

I was around her recently when someone asked if she wanted a girl or a boy...her response? "it doesn't matter as long as he or she is healthy."

I've heard it a million times and I'm sure you have too. At the time I didn't give it a second thought, after all isn't that what every mom hopes for? But it didn't take long for me to think...but what if that joy as days comes when you get to meet your child and you find out that they are not healthy? What happens then?

Our situation is different. We adopted both boys knowing that they were "not healthy", down syndrome, heart conditions, prematurity...the list really does go on and on. All those things we knew about...

About a year an a half into motherhood I was taught an invaluable lesson when we found out Malachi had a stroke and his further diagnosis of moyamoya. I learned that at any second your life can change. I could deal with all those things listed on the adoption papers, but a stroke? Brain surgery? I didn't sign up for that. As Josh and I sat in the er room holding Malachi worrying about all the what it's we had a discussion. Through our sobbing, we decided that no matter what happened our hopes and dreams for Malachi would not change. He was alive and at the end of the day, that's all that mattered.

So what do you want, a boy or a girl? I'll tell you what I would want...a baby who will make this world a better place just for being born. A baby that will teach us the meaning of life is more than just getting from point a to point b. That's the kind of baby I would want, any baby healthy or not will do just that. I'm thankful for my children even though they were not born healthy and my dreams for them are to grow up to be the best they can possibly be!

New year's resolutions

2011-01-04T09:57:00.000-08:00

I'm not one to make new years resolutions. I've tried before, giving up pop, losing weight, keeping the house cleaner, so on and so forth. Like many others, my resolutions rarely last longer than 3 months. Life gets busy and that can of coke is oh-so needed after a late night, the McDonald's drive through is calling my name on the way to an appointment and laziness sets in. I question if these things really matter. Will no pop make me happier? Will stressing over losing weight make me a better mom? In some forms, possibly but the guilt I feel when I fail makes me me feel sad and defeated. What I long for is to make changes that will make my relationships stronger, my marriage stronger and my children stronger. So this year I wont feel guilty for drinking a can of pop or letting the laundry pile up on the laundry room floor. This year I'm going to do a better job supporting, encouraging, thanking and loving on those closest to me. That's my new years resolution. What's your's?

Woah!

2011-01-02T11:11:00.000-08:00

I can't believe it's been so long! It has been a wonderful and much needed break from the blogging world. I wanted to start off the new year with a bang, some exciting news or the perfect picture but I have none. Sorry to disappoint. The boys are doing great and both have had a growth spurt over the last few weeks. Christmas was a blast. We enjoyed time with our families laughing and making memories. New years was nice as well. We were able to host our good friends for the night. We had good food, fun games and nice relaxing night. It was truly all that we could have asked for.

My hubby goes back to work on Tuesday and I am not looking forward to it. We have had two weeks together as a family and have enjoyed every minuet of it. We got to go to the Shedd Aquarium, see the Harlem Globetrotters and Josh and I even got a date night! Christmas 2010 has been a blast, looking forward to doing it all again next year!

This is my official "welcome back" post. Sorry it was so lame!

What a Week!

2010-12-11T07:24:00.000-08:00

I'll admit. I've been in a blogging slump. So much to say but no desire to do so. Call it what you will.

Regardless, I feel the need to post something...anything. So here goes nothing....

On Monday we had Malachi's IFSP meeting. It went better than expected. There was absolutely no arguments and not once did I have to disagree. Unheard of, I know. I am oh so thankful that it went smoothly. We have CUT BACK Malachi's PT and OT from twice a week each, to once a week each!! We all feel his recovery from his stroke has been magnificent and that we don't need to keep up with the extra therapy! Woo hoo, this tickled me pink! We also decided that when spring comes he will have land PT twice a month and aqua PT twice a month! So excited about this, as I know he will LOVE it!! I also found out that we will soon be having his transition meeting (probably Feb.)! Yikes. This took me by surprise and brought tears rolling down my face! I am so not ready to put him on the bus and send him to school 4 days a week!

In other news, Malachi was taken off his Reglan. His pediatrician felt the risks out weighed the benefits and he has been on it for over a year! We are pleasantly surprised that his reflux seems to be better and we have had very few issues. We are planning on keeping him off of any reflux meds from here on out!

Hope we you have a blessed weekend. We will be busy celebrating birthdays (joshes mom and grandpa), making Christmas cookies and attending an ugly Christmas sweater party. Oh and did I forget to mention more snow and bitterly cold weather? Moving someplace warm always looks good this time of year!

Feeling Blah

2010-12-02T17:38:00.000-08:00

It's that time of year again and while I should be bursting with joy with all things holiday, I find myself in a funk. A fun which creeps up on me despite my best efforts to brush it off. Not only has the weather gotten cold, the snow has begun to fall and the ease of taking 2 children out has disappeared, its also Malachi's annual IFSP time. This means re-evaluations and a meeting, with his team and most likely a "discussion" or two (lets be realistic the whole meeting will be a "discussion")

After a week of evaluations, it has been determined that Malachi is behind. Go figure right? Down syndrome, premature, drug exposed, stroke, heart defect, poor vision...the odds are stacked against him. So why am I feeling so negative about the situation? Good question, but I have no freaking idea! Malachi has overcome SOOOO much, shouldn't I be happy that he is walking, crawling up the stars, signing over 40 signs...the easy answer is yes. And I am! So very thankful that his massive stroke didn't leave him paralyzed, that being born only weighing 3 lbs didn't cause him to be hooked up to an oxygen tank 24/7 and that he is doing so much...SOOO MUCH!

BUT, there are things that still get to me. Talk about how his lack of attention, his anger management skills, the fact that he STILL can not eat table food, questions about his lack of verbal speech, his lack of use in his right arm (still left over from the stroke)...so many challenges to overcome, such a long road a head of us, how can I not feel depressed? I rarely feel overwhelmed (for example, elijah's heart surgery and week stay in the hospital and Malachi's stroke 2 days after Eli got discharged followed by another week in the hospital...I like to think I endured that like a trooper) and I am struggling with how to handle it. I dont like it, not one bit. BUT this to shall pass...right?
For now I will look at these sweet faces...

and remember that we do this all for them! And they are soo worth it!

Thryoid?

2010-12-01T14:32:00.000-08:00

Malachi has been sick, go figure. While we were at the pediatricians office, for the 3rd time in 2 weeks, they decided to run some labs to check for allergies. While they were taking blood I ashed her to go ahead and check his thyroid. While the RSV, Influenza A and B and allergies all came back negative, his TSH came back at 5.79 and his T4 came back at 1.1. We were referred to a pediatric endocrinologist. Just wondering if any of you have been through this and can offer good questions to ask. Thanks!

Auntie Em

2010-11-22T18:10:00.000-08:00

We have had some crazy weather here in northern Illinois today! I knew when I woke up and saw they temp we were in for some serious storms. I was right. By 9 in the morning we had tornado watches...in November! CRAZY.

Me and the boys were out an about when I heard the sirens going off. It was around 3:15pm. Then I saw it, clouds swirling, and I knew I needed to turn the other way. I saw the funnel cloud in the distance (probably 2 miles away) and my heart started beating out of my chest. I drove the opposite direction until I could no longer hear the sirens. The radio said a tornado had touched down and was heading towards the town right next to ours. YIkes! I turned back around and headed home. After I was back on my path home I saw it...HUGE electrical towers down, one laying on the ground, the other two twisted together. There were branches down and the trees looked like they had gone through the shredder. A few mins. later I reached our neighboring town, population..200. I couldn't believe it. Complete devastation. Then I heard on the radio that a school bus had been thrown into a corn field...it was full of students. Their were house with no roofs, foundations with no houses and rescue personnel everywhere. Ambulances, fire trucks and police lights flashed as far as I could see. Then in the middle of it all, a old white church, with stained glass windows complete unharmed. Why? I can only assume my neighbors are questioning why our houses were spared and theirs were eaten up by this monster of a tornado. We live less than 2 miles away.

I pulled in the drive way to see our house perfect and cried. This is the 2nd time in 3 years that a tornado has touched down within 2 miles of our house. The last one was 3 January's ago and our local apple orchard was demolished. Our community rallied together to raise money for the families affected. Red cross set up an emergency station at the fire station down the street.

As I type this I can hear helicopters buzzing around in the air. I'm sure my newly homeless neighbors are getting settled in the fire station still a buzz about what just happened.

Please remember our community in your prayers. It's going to take a LONG time to recover. I will post pictures soon.

Gotcha

2010-11-21T17:49:00.000-08:00

November 21st 2008 will forever be etched in our minds.

For weeks we had been traveling to Chicago to visit our son who was to ill to come home. He was living in a house for medically frail children, slept in a room with 5 others who were deemed to sick to live a "normal" life. Some were their because their parents felt their child was to difficult others were their because their parents chose to abuse them while still in the womb. Then their was Malachi, born with the odds stacked against him like so many of the other children, his future looked bleak. Little did he know...little did we know our lives were going to be flipped upside down and out of the darkness of that modern day orphanage we were given the most valuable gift ever!

I still remember the first time I walked into that "house." Their were twenty some kids, with different stories, different challenges they needed to over come. We were introduced to Malachi's nurse Dee. She was holding Malachi. That exact moment my heart melted and I fell in love. After an hour visit, we left in tears. We promised we would be back to get him. We made many more trips to the city over the following weeks, each time we bonded with our son more and more. He was already teaching us so much.

Due to the fact that he was born 6 weeks early, had a heart defect and very immature lungs, he got sick and wound up back in the hospital a week before we were supposed to bring him home. His gotcha day was up in the air. Our hearts were broken. His room was ready, clothes were washed, diaper bag packed and the car seat secured in our car but we didn't know when we could welcome our new bundle of joy home.

November 21, 2008 we went back to Chicago praying Malachi would be able to come home. We had a CPR training, a final test on his medication and a meeting with the DCFS case workers and the nurses that had cared for him. We were told that they still hadn't heard if he was going to be discharged so we decided to head to the hospital to visit him. While we were driving through the parking garage we got a call. With a joy unexplainable we were told he was going to be discharged directly to us!!! We ran back to the orphanage to pick up his stuff then rush back to the hospital to get our baby!

Here is a picture of us waiting to be discharged.

At 7pm we walked out of the hospital with our son!!!!!!! It was one of the best feelings ever and our lives have not been the same ever since.

My sweet boy,
I love you more than words can ever say! Your smile melts my heart and your hugs bring tears to my eyes. You are so loved! Thank you for blessing us all! God brought us together as a family and I will forever be thankful. Happy gotcha day! Momma and daddy love you to the moon and back!!

2010-11-16T08:04:00.000-08:00

This is long, long, long over due. Please forgive me.

One November 4th we celebrated Eli's first birthday. Our day was typical, Josh worked, the boys had ungodly amounts of therapy, you know the usual. My mom and dad came over for dinner and birthday cake. I attempted to make Chicken Pot Pie, from scratch. About and hour before my parents were due over, I tasted it. It was horribly sweet and I knew instantly I couldn't serve it. In the trash it went. My kind husband told me I had used sweet cream butter rater than normal butter. Who knew there are so many kinds of butter? Can you tell im not a cook? HAHA Anyways, I sent Josh out to the store (mind you I live in a town of 1,500 people and our grocery store has VERY limited items). I quickly threw together a new chicken pot pie. It was okay, not enough flavor. Eli enjoyed the veggies and Malachi enjoyed it in his preferred puree texture.

The highlight of the night was Eli eating his cake!! And then a bath in the sink! Look at that smile!!!!

November 6th we had his birthday party! We found a environmental center that had a room we could rent for a few hours. The best thing about this center is that they have a birds of prey exhibit. And since the theme for the party was owls, we thought it was perfect! I didnt get a ton of pictures from the party, I am hoping someone else got some!!!

Itsnt it amazing? No, I didnt make it. But thanks for thinking I did!!

The little owls made to match the fabric. LOVE how it turned out!

Now that It have taken me and hour to upload these pictures, you better enjoy them. Is anyone else having a hard time uploading?

Happy Birthday my little man! Thank you for you content nature, your smiles and snuggles! We love you more than words can say!

Getting back to it

2010-11-15T09:45:00.000-08:00

To say that we have been busy is an understatement. I don't know where the last week and a half went or even what we did, but we are already half way through November. Wowza! Things here are going well. Elijah turned 1 and is now a full time sitter! We had a wonderful time at his party and were blessed with family and friends spending the day with us! Malachi has been abnormally busy the last week and his been climbing on EVERYTHING! Im predicting now a broken bone in the near future! Perhaps we could get a cool cast? The kid is a dare devil, the risker the better.

I will post pictures tonight.

No time now

2010-11-08T05:01:00.000-08:00

AHHHHH...it has been crazy! Eliajh is one, as of the 4th. We had his party. Yesterday we went to a Celebrity Chef brunch and to the hospital to visit my friend who is in liver,kidney and heart failure. She is 27. Yesterday they found a blood clot in her heart, once that is under control they can per sue a liver transplant. She is on the list and now we pray one becomes available. I've know her since I was 4. My head is spinning, my emotions are all over the place and I am scared. PLEASE pray for her and her family!!

Im off...dont know where im going but i know there is somwhere I am supposed to be. AHHHHHH!

All the rage

2010-11-02T17:14:00.000-07:00

Sitting.

Seemingly so simple, in reality, it's not at all.

Many. Many. Many things need to be just so before one can balance on their bum.

Tummy muscles must be toned to perfection. Ribs must be descended.

And your mind must be in tip top shape to accomplish such a great feat. It's no walking on a wire, but one sudden move may send you falling through the air to your most certain death.

Risky is an understatement.

But with a mind as sharp as Mr. Miyagi and abs like The Situation, Elijah is ready.

Without further adieu...

The amazing, the talented... Elijah! Yes, his smile says it all!

Oh what a day

2010-11-01T17:32:00.000-07:00

We had a wonderful Halloween. We started the day off with a visit to the Japanese Gardens with Joshe's mom and dad. It was a perfect day for a fall stroll through the gardens.

After a nice lunch we headed home to put the boys down for a nap. My mom and dad came over for pizza before we took the boys trick or treating. Here are my little duckie and tiger.

Malachi didnt last long, it was cold and he doesn't do well with all the noise. People in our neighborhood go all out, it's crazy. After a little trick or treating, we came home and put the grumpy kiddo's to bed!

On an entirely different note...Elijah is turning one this week! We are celebrating with my parents on his actual birthday, but we are planning a HUGE party for sat. Here is a sneak peek at the theme and decor for the day...

The final look will be reveled this weekend.

Life Lessons

2010-10-27T11:52:00.000-07:00

Lesson # 1

Malachi-
Today I watched you struggle trying to get onto the couch. You pulled and grunted and screamed and got no where. You looked to me for help but I couldn't help you. Im sure you thought I was being a meanie and if you could speak Im sure you would have told me you hated me. You wanted SOOO badly to get on the couch and you simply failed. I want you to know that we ALL struggle with something, it's a part of life. I am, for example, a HORRIBLE cook and even though I have tried and tried, I still can not make a descent meal (I apologize for the less than appetizing meals you will endure when you are older). You see, I love you VERY much and want you to succeed in everything but you will never succeed on your own if I do it all for you. I'm trying to teach you to be independent (big word for you right now, but when I am long gone and you are reading this, you will understand). You have to learn to do things on your own and you do that with trial and error. Although it kills me to watch you get so frustrated, it's something I just have to do. Remember we went through this after your stroke? You couldn't hold your cup and wanted me to do it all the time for you. After a few days of showing you how while helping you, I stopped. Within a matter of hours you figured out how to hole the cup all by yourself. I still remember the smile you gave us when you realized you could do it. You were so proud. One day I will see that same cheeky grin when you master getting on the couch, I can't wait. But until then you must struggle and try to remember that their are lessons to be learned along the way.

I love you little man. Please never give up!

Life lesson #1 was brought to you by mom.

The first time you held you cup all by yourself a week after your stroke!!

June Cleaver

2010-10-25T11:27:00.000-07:00

I'll admit. I am not the most organized person in the world. So with 2011 (YIKES) quickly approaching, I figured I MUST get my house organized so that I can start my new years resolution off right. Its early to being thinking of the new year, and I'l be honest, I HATE new years resolutions. So what makes 2011 different than any other year and why am I getting a head start on my unheard of resolution? The answer is simple...my house is cluttered, my house if full of things we don't use and my house is a cause of much disorganization. I want to be a super mom with dinner on the table when Josh gets home from work. I want the house to be clean and organized for him and I want to do his laundry and put it away simply to make his life easier. I LONG to be like June Cleaver, chuckle if you must, but that woman had it together. So 2011 at our household is going to be different. It will be organized and clean with closed washed and put away, not laying on the floor in the laundry room, dinner will be on the table at least 2 nights a week when josh gets home and the weekends will be free of laundry and cleaning, we will have all the time in the world to be together as a family, no chores, just fun. Ahhh..I cant wait. I will take pictures as we progress through our house, cleaning and organizing each room. I would take before pictures, but Im not that brave! hehe

Wish me luck!

Good will bag total: 5 (just clothes from our bed room we are getting rid of, the down fall of a large closet, you can fit more clothes in than you can ever wear!)

Short, Short....ARMS!

2010-10-20T08:58:00.000-07:00

Elijah is not as gun-ho about gross motor as Malachi is/was. I hate to say it, but at almost a year old, Elijah is not officially sitting up yet. I swear its his blasted arms that are holding him up. They are short, very short, and although I LOVE how un-proportioned they are, it only makes his quest for stable sitting nearly impossible. Who would have thought arms would play such and important role but my PT assures me they are imperative. Since we can't change the length of his arms, or his drive to sit like a big boy, we have to resort to other measures. The step stool has become our best friend and when not being used as a torture device by his bis brother, we use it for Elijah to prop his arms up on. Giving him the extra 5 inches in length has surly been to his advantage and today, for the first time ever, Elijah sat, without the use of the step stool for a whopping 10 seconds. He got a small taste of the good life and I assure you he will be longing for another taste soon. I hope this time it lasts long enough to catch on camera.

Strangers

2010-10-16T13:50:00.000-07:00

We are always told stranger danger. It's a catchy way of reminding our children that strangers can be dangerous. Well even to this day I am leery of strangers, especially the creepy ones we meet at the mall and ask if my children are twins...come on people! This past week I was contacted by a stranger on Facebook. Yikes, I got the goose bumps. She wanted to be friends and sent a little note along with her friend request stating that our children had similar stories. I did something i NEVER do, I accepted a strangers friend request on Facebook. This lady now had access to pictures of my family and most importantly my innocent children. I decided to send her a message and after a few casual messages back and forth I found out that her 2 year old daughter had a stroke on October 1st. Then it all came flooding in. I had recently posted Malachi's story on a pediatric stroke awareness fan page. So while I was sitting in the waiting room at Malachi's eye appointment I began to cry. All those feelings of hopelessness, fear, and worry came flooding back in by simply thinking of what this stranger was going through. She messaged me again and said the location of the hospital where they were at. I sat in my chair, completely unaware of my screaming children and realized we were AT THE SAME HOSPITAL! I wrote back and said that I was there and if it were alright with her, we would come for a quick visit.

After we were done with the appointment we headed up to the PICU to see a complete stranger who is in the same place we were only a few months ago. I no longer feared this woman but instantly felt a bond with her. Her daughter only a few months younger than Malachi laid in her crib sweetly resting. Her room adorn with balloons, pictures and cards from family and friends. After a little while of visiting we left vowing to get together when her sweet little one is feeling better. We are so looking forward to that day.

I love that we could be a source of information, encouragement and hope for her and her family. God truly worked that day and I still can't believe this stranger will now be a friend for life.

Please say a prayer for sweet J. She has come a long way but her journey is just beginning. Continue to fight, work hard and never give up and you to will beat the stroke!

I fail

2010-10-15T13:45:00.000-07:00

Well we are about 1/2 way into October and I have already failed on my goal of posting each day this month. Oh well, no need to cry over spilled milk (not that Im crying).

Phew, I feel like I can finally take a breath, this past week has been crazy 3 doc appointments, 4 hours of therapy all on the same day and we have spent 10 hours in the car in the past 3 days. Monday we had Malachi's appointment at the feeding clinic. It went wonderful, we got some answers and some new things to work on. Thankfully she thinks this is something he will overcome. Great news!

Thursday we went to the eye doc. He said that his Rx hasn't changed. He is near sided, which we knew, but his right eye is twice as bad as his left. He is worried that he will at some point stop using his right eye which means it will start crossing and become lazy. So he suggested we work on the glasses (ugh, this is NOT going to be fun as Malachi HATES anything on his head or face). We will monitor this closely, surgery is an option if it gets to that point. We are praying it doesn't.

Today we headed by the lake for Malachi's first dentist appointment. I have been dreading this for weeks. Malachi HATES brushing his teeth (at least for me, Josh says he does fine for him, typical) and I knew it would be a fight to get him to open. The dentist specializes in kids with special needs, so that was great. They knew just how to get him to relax and open. And the best news...NO CAVITIES! Woo hoo! We have thought for a while that Malachi may have an extra tooth. After an x-ray we were informed that he is actually missing a tooth. This is actually good because his teeth are already crowded and the missing tooth will allow for extra space for the others. She said it's nothing to worry about. We also learned that the "extra tooth" we saw was not extra. This silly little tooth that looks so out of place is actually fused (below the gum line) to it's neighbor. Talk about jacked up teeth. haha Just blame it on the Down syndrome. Like the missing tooth, she said this was nothing to worry about. He goes back in 6 months for another check up. Elijah will go at that time too!

Now your caught up. Have a great weekend. Stayed tuned I have a VERY cool story to share tomorrow!

A day to remember

2010-10-10T17:40:00.000-07:00

The 2010 Buddy Walk was AMAZING!! The weather was perfect (88 degrees, last year it was 58), we were surrounded by the best family and friends we could ask for, we feasted on yummy food, we raised money for Down syndrome awareness AND we got some exercise! ha. It was a day full of memories we will take with us forever! Thanks to all who donated and all those who walked with us!! There are no words to express our thankfulness for you love and support!! We are truly surrounded by the most amazing people ever! Thank you, Thank you, THANK YOU!! Here are a few pictures from the day!

Tomorrow Malachi has an appointment with the feeding specialists at the children's hospital (2hours away, ugh). We are hoping to get some answers as to why this child will not eat solids. Can't wait to update you tomorrow on the results, pray for positive ones!!

What my kids are...

2010-10-07T07:00:00.000-07:00

My Kids are...

Loved, so loved.

Strong, overcoming so much

Silly, laughter beams from their mouth

Smart, they are able to enjoy the sweeter things in life

Willing, loving everyone and everything no matter what

Challenging, it's not always easy

People, despite what other may thing

Worthy, of so much more than many will give them credit for

Beautiful, from their almond shaped eyes to their sandal gap toes

Gifted, their presence can change your mood in an instant

Encouraging, the troubles in your life seem like nothing compared to what they go through

Blessed, so many will be on this journey to cheer them along

Stubborn, they are not always happy and easy going

Lastly....

They are a gift, sent to us to teach us, love us, challenge us, encourage us and bless us. Everything we do for them, they do for us x10, not because they have to but just because of who they are. They are a gift that we are so unworthy of but so thankful for.

Thank you my sweet boys for being nothing more than you.

Love, Mommy and daddy

Gotta keep movin'

2010-10-06T18:30:00.000-07:00

Im a little disappointed by the lack of support I got regarding my last post and my FB post for those of you heading here from there. BUT, the good news is that I am going to do something and the only person I am held accountable to at the end of this life is God. So join me or not, it's your choice.

On a Much, MUCH lighter note...it's Buddy Walk weekend!!! Woo Hoo. Wish all of you lived closer so we could meet in real life and I could love on your sweeties whom I've grown oh so found of!! Needless to say, we will have another HUGE group this year. Malachi and Eli will be the star of the day and I will beam with joy that my children are so loved by so many!! Not to mention all the money we are raising for NDSS!! It is sure to be an awesome day, I will be sure to post all about it!

After 4 hours of therapy with my boys today, I am spent. Good night, sweet dreams my sweet sweet friends!!

I hope this breaks your heart

2010-10-05T12:12:00.000-07:00

My hope is that this post will break your heart, leave you in tears, put you on your knees praying and allows you to look into you're "perfect" life. I want you have a desire, so strong, to do more. I want you to ache for these people, I want your every waking moment to be consumed by the images of their sweet faces. I pray that God puts a burden in your heart to stand up and fight with all your being for the respect these people deserve. Will you allow yourself to step out of the box, your comfortable, safe box for just a moment to watch the following video? Or will you click off this page and going on living your "perfect" life? Or even worse, will you watch it and still do nothing?

Watch the video now.

Are you sick to your stomach? Are tears flowing down your cheeks? Are you moved to action?

Check all of the above for me please.

I will do something. Will you join me? I don't know when and I don't know how, but I will.

God use me. Use all of me to help these innocent children. I am ready, I am willing and I desire to do something more. I know you made each of those people to be more than a body laying in a crib. They are perfect in your sight and an amazing testimonial to your power. Raise up other who desire to help. Surround me with people who yearn to change lives, to get out of the box and to do something. Give me the words to say to those who turn a blind eye. Give me the strength to go and do. Only you can move this mountain and only you can set the journey. Show me, show us. Keep those safe who are already there, left to die. Give them strength to fight and courage to remain until we come.

Car-seat frustration

2010-10-04T18:46:00.000-07:00

As much as I LOVE the ease of Elijah's infant carrier, my elbow needs a break. So we are in the market for a big boy car-seat for my little love. And, actually for my larger love. Malachi currently rocks and Evenflow Advanced, which I like, BUT, it's HUGE and takes up a ton of space. Since a mini-van is not a financial option we have right now (although my little suv is nearing 112,000 miles) we a looking into other cheaper options. We are trying to decided between and Britex Roundabout 55 and a Combi Coccoro. They are about the same price which makes our decision even more difficult. Has anyone out there experienced either of these seats? Give me advice and help me choose...or better yet, just make the decision for me. K? thanks! :)

Big boy

2010-10-03T10:43:00.000-07:00

My littlest love is not looking so little anymore.

I LOVE his smile and the way his little nose turns red when he laughs.

I LOVE his easy going personality and the fact that he is almost always content.

I LOVE when he talks me while we are snuggling before nap time.

I LOVE his big brown eyes and they way they sparkle when he looks at his daddy and big brother.

I LOVE the way he wakes up with crazy bed head.

I LOVE Elijah and EVERYTHING about him!!! He is perfect, just the way he is!

Freedom

2010-10-02T06:44:00.000-07:00

As many of you know, Malachi LOVES to sign. His love goes so deep that he often chooses signing over actually using verbal words. We love that he can communicate so well with those chubby little hands, but audible noises would be much appreciated. His favorite signs, you ask? Cow, Eat and Chicken. Little man is so smart, little does he know that you can eat chicken and cows! ahaha

His love for animals is what inspired us to take a trip to the Milwaukee Zoo. His favorite exhibit was the fish and turtles. I think a fish tank is in our near future!!

But the one thing that tickled his fancy the most was walking and the freedom it brings. I LOVED watching him explore. His hands touched everything (don't get me started on all the cooties we were exposed to), his eyes scanned around him and the little wheels in his brain were going faster than ever! Freedom never tasted so good!! You deserve it little man, thanks for fighting!!

October!!

2010-10-01T07:26:00.000-07:00

Dear Family and friends,
   We can hardly believe that it's already October! So much has happened this past year. Many of you know that October is Down syndrome awareness month and the past 2 years I have participated in 31 for 21 where I commit to blog each day to raise awareness. This year is no different. I will be posting basic information, fun stories, pictures and our own experience raise 2 amazing children with Down syndrome.

   Malachi is now 2 and full of attitude! He loves to answer questions with "yeah" or "no." He is officially walking and the joy he feels shines through his smile. He is proud, I LOVE to watch that!! Brain surgery this summer went great and he is recovering quickly. We see less and less side effects of his stroke and are hopeful that he will make a full recovery. We will go back to Boston in the summer of 2011 for a follow up angiogram to see if the surgery was successful.

   Elijah will be 1 next month! Yikes! He is the most content child ever!! His smiles and giggles happen more and more and his personality is coming out. He talks all the time and eats even more than that!! This past week he has begun crawling and will no longer stay in one place. His adoption was finalized in Aug. and we were blessed enough to have my mom, brother and best friends there.

   Thats all for now. Please check back daily and let me know you were here.
   Erin

Ps. For those of you that want to share you love for Elijah and Malachi on Facebook, feel free to save the following images to you desktop and use them as your profile picture.

My new endever

2010-09-23T16:17:00.000-07:00

Yes, my friends, I am a sewing maniac. Pants are my latest, are they not the cutest things you have ever seen? These are my first pair ever and they turns out great!!!Love them to bits, the fact that they have owls on them just lead to my obsession. So what have you all made lately? Ya know, in all your free time? ha

I've got a plan

2010-09-15T13:28:00.000-07:00

So yesterday I posted that I was going on a break. It didn't last long, I know. In the past 24 hours some things have been reviled to me. My heart is breaking.

I was on the Reece's Rainbow site and fell in love with this sweet girl.

Meet Maeve. She will he a year old on January 6th. Her sweet little face melted my heart. I'm in love and at the same time I am sick. Sickened to think that her first birthday will be spent in an orphanage, with no family or friends to spoil her with love, no cake and ice cream, no hugs or kisses, no one will sing her Happy Birthday, for her it will be just another day. What will we be doing on January 6th? Most likely recovering from a Christmas full of delicious food and an overabundance of new things. Perhaps recovering from a New Years Eve party full of memories surrounded by the ones you love. But Maeve will just be, laying in a crib completely unaware of a life outside the walls of the orphanage. This crushes my heart. It's not fair. I feel God gently tugging on my heart, asking me to do more than just hurt for these children. Im committing to pray over each of the waiting children on the Reece's Rainbow site each week. Im praying that God opens doors, moves mountains and creates a group of people in my life that will join us in doing more. Im praying families will come forward, to help raise awareness, money and yes, adopt. These children were made in Christs PERFECT image, they are here on this Earth for a reason and they deserve a chance. Im praying for BIG things to happen, will you join me? Will you pray daily for these children? Will you work on bringing awarness? Will you give up your life so that others have life? It's so worth it and it's rewards reach far beyond the physical ones here on Earth. God us me, God use us!!

Nothing

2010-09-14T10:52:00.000-07:00

I've been racking my brain all week trying to come up with something, anything to blog about. Needless to say, I've got nothing. So, I've decided to go on a break. I will return in a few weeks, unless of coarse something blog worthy happens sooner.

My little Foodie

2010-09-09T18:57:00.000-07:00

Mom what are these things?

Oh, Little apple flavored nuggets of pure heaven!!

Dad, why have you been holding out on me?? These things are delish!

Do you see it in there? I picked it up and put it in my mouth!!!

I absolutely giddy with joy!! THanks mom your the best!

Ahh, what can I say Elijah, I know. And you my, sweet boy, are the best 10 month old around!! We make a good team! But, you are growing up much to quick, slow down a little, okay?

Just the way I like it

2010-09-07T19:16:00.000-07:00

Gone are the lazy days of summer...

Gone are the family get together's at parks...

Gone are county fair's...

Things have been, shall I say, boring?? Probably just jinxed myself, but it's true. Since Josh has gone back to work, it's been business as usual around here. We have therapy up the wazoo, schedule's, appointments and work to get done.

It's back to working on walking...

And sitting up...

Things are boring and that's just the way I like it!!

One more picture for you

Boys will be boys...

Just add it to the list

2010-09-03T18:08:00.000-07:00

Here is a list of all the medical diagnosis my children have had in the past 2 years.

AV canal defect x2 (With open heart surgery for each)
Silent Aspiration
Hearing Loss
Vision Loss
Nystagmus
Pulmonary Hypertension
Heart Failure
Bronchitis
Pneumonia (to many to count)
Rotavirus
RSV x2
Human Metapneumovirus
Constipation
NG tube
Moyamoya
Stroke
Brain Surgery
Stitch abscess x2
Croup
Adenoids out
Ear tubes x2
Anal Fissure (ouch)
Urinary Tract Infection
Sickle Cell Trait
Right Branch Bundle Block x2
Super Ventricular Tachycardia
Down syndrome x2

Hyperkalemia

Sleep Apnea

and our latest ailment to add to the list....C-Diff.

Poor Eli has been battling the runny poops for weeks and we FINALLY got a good number 2 sample from him...the results confirm that there is a nasty little critter (or many) living in his intestines. Ugh. We are hoping that after 2 weeks of Flagyl he will have nice number 2's. But for now we wash, bleach and repeat all things in our house to keep this nasty cootie away from big brother.

After that lovely picture...hope you all have a great weekend!!

Camping

2010-08-30T08:23:00.000-07:00

This past weekend we went camping...in a tent...with 2 children 2 and under. Yikes. We packed up the car and headed to Wisconsin for a fun filled weekend in the great outdoors. We swam, we ate, we played in the sand and dirt, we sat around the campfire, we laughed, we played and we ate some more. Most importantly we spent time as a family with no phones, no internet and no tv's. It was just us, a few friends and nature (and a campground full of other families all doing the same thing). Elijah was a champ, Malachi, on the other hand, not so much. He was a beast. Anytime we take him out of his comfortable environment for more than 15 hours he morphs into a crying, hitting, hair pulling, screaming mess. Don't get me wrong, there were moments when he was his happy self and we loved those times. He didn't sleep well at night and ended up sleeping on the air matress with us, rather than in the pack n play. Needles to say the lack of sleep for all of us put us all in rare form. I think we will wait until next year to try again!

Double trouble

2010-08-27T06:49:00.000-07:00

It's that time of year again!! We are gearing up for our 3rd Buddy Walk!

October 10, 2010

Cantigney Park

We are looking forward to joining forces to raise money and awareness for those with Down syndrome!

Last year we had a team of 25+ people and together raised over a thousand dollars! This year we are looking to add even more people to our team and raise even more money!

The importance of this walk is not only to raise money but to show your love and support for people with Down syndrome. Elijah and Malachi only want to be accepted and loved so come join us for a fun filled afternoon! Can't walk? Then donate, everything helps! Can't donate? Then come for some fun, your support means the world to us!!

This year is going to be bigger and better! New t-shirts (provided as our thank you to you for loving out children) and lunch will be provided along with a few other surprises!!

Please follow the link below for easy registration and donation!

Team Double Trouble

People who "Are"

2010-08-25T08:58:00.000-07:00

So I stole this from Renee's blog. Please take the time to read it. It's writing that just may change your life and the words you chose to say. It just may change your heart towards acceptance. It just may be the starting point of something huge, that is, if you let it.

By: Dave Hingsburger

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Calling all mammas

2010-08-23T07:58:00.000-07:00

I really, really, really need your help!! As many of you know, Malachi has issues with eating. Fist of all, he is a silent aspirator. This means any liquid that is not thickened travels into his lungs. Thus making him very sick. We have been thickening liquid for 1 1/2 years now. Im going to confess, my 2 year old is still eating baby food. I have tried things like puffs and he gags and chokes on them. I dont know what to do. Feeding time is no longer fun for me. Malachi wants to try other foods, but cant. Got any tips, advice or magic jew jew to help?

Ive got nothing

2010-08-18T16:58:00.000-07:00

I have been MIA for a few days. Josh went back to work which means I am flying solo for all 6 therapy's and doctor appointment, I forgot how difficult it is. I just keep telling myself it will be easier once the kids are in a routine again. This week we headed up to Madison to see the ENT and have a hearing test for Malachi.Good news: both tubes are still open!! Bad news: we still can't get an accurate hearing test on him. He is either to smart, stubborn or both to pay attention to the noises. I bet if they played music he would look! We got back in 2 months for another test and 6 months to see the Dr. M. Speaking of Dr. M, we just LOVE him. He always asks Malachi to show him new signs and gives him a big hug when we get there. Makes me smile every time!

Today we headed to Oak Lawn to see Dr. N, Malachi's neurosurgeon here in IL. We got the results of his MRI last week. Good news: It showed less fluid which means at this time there is no need for another surgery! Bad news: Fooled ya, there is no bad news! We got the all clear we don't have to go back for 6 months, well as long as there is no further drainage! Hip, hip, hooray!

And now I leave you with a few pictures:

Riding the tractor at the fair, doesn't he look enthused?

We have a part time thumb sucker on our hands! If there is no binkey these hands can read the thumb will suffice!

Lets Roll

2010-08-12T06:12:00.000-07:00

A few days ago I wrote about my frustration at the rut Malachi has been stuck in for 2 months now. He continues to take 3-10 steps on his own before falling to his bum. Ugh. I just want him to walk so he can explore while outside, climb on the playground and have some independence. Physically he is strong enough and has the coordination and balance needed to walk on his own. Malachi's issue is more of a mental thing. He lacks the confidence needed to just take off. So, after speaking with his PT we came up with a plan. We now have in out possession a posterior pediatric walker...aka a Nimbo. This thing the the cutest little thing I have ever seen. Malachi tried it out for the first time yesterday and he cruised down the sidewalk with it. He will often let go and start walking on his own, which is great, but we will have this when he needs the assistance. We are hoping that after a few weeks with the Nimbo, the he will become confident and take off on his own. PT can not move forward until he is walking on his own, so we are trying all the tricks we can come up with, and yes some are unconventional. Here are a few pictures of Malachi with the Nimbo.

Daddy helping

I dont need that stinking thing, I can do it on my own!

1st bath in the BIG bathtub

2010-08-10T17:41:00.000-07:00

Seeing that Elijah is now 9 months old, I figured it was time to get rid of the baby tub and let him experience the joys of the BIG bath tube. Let me start off by saying he is not nearly as excited about the tub as his big brother but with time I believe he to will become a water baby.

Those pouty little lips and chubby cheeks, I just love em.

I'll take LOVE for $500 Pat

2010-08-09T17:04:00.000-07:00

Im just going to say it...love is a choice we need to make daily. Gasp. I know, I know. You all are thinking Im nuts but I assure I am not. Let me dig a little deeper...

I love my husband and that doesn't change. I will never fall out of love with him, there is nothing he can to to make me love him less. Just like my children, I love them with all my hart and no matter how naughty they are, I still love them. Unconditional love is what I am speaking of. The kind of love that will always be there regardless of outside factors. But what about when my husband says something mean? I still love him deep down there is no challenge there, but there is a challenge when is comes to my response to harsh words. I call my response Everyday love. This is the love that takes works, lots and lots of work. This is the love that fades when a husband cheats or a child steals. This is the love that we choose.

Malachi was rotten today. No, seriously, the hair pulling, hitting and throwing toys is really getting to me. I wanted to throw all his toys out and stick him in a 6 hour time out today. Obviously I didn't because I CHOSE my reaction to be in Love rather than in anger. Was it difficult? Heck yes. Is it any easier when a friend isn't there when you need her? Or when a family member disapproves of your decisions? Nope. We still love them, but often times we chose to respond with anger.

This hit me like a ton of bricks last night. My husband and I were at a wedding enjoying the fellowship of friends. It was time for the best man to give his toast, guess what it was about? Yes my friends, love. He said that Love is a decision we make every day. I don't agree. Loving my husband is not a decision but RESPONDING to my husband in Love is. I don't enjoy writing this because this is something I struggle with. Most days I chose to respond with attitude or short answers. It's a downfall of mine and something I have been praying about for a while now. Choosing to love goes beyond my husband, its a decision I have to make with my children, my friends and my family. Regardless of the situation, I need to respond with love. So tonight instead of writing a nasty post about some stuff that has been going on lately, I am choosing to respond with love and ask you all to pray for me.

Surprise

2010-08-04T06:05:00.000-07:00

We are HOME!! We are just as surprised as you. Dr. Nikkas decided that he wanted more time between Malachi's MRI and since Malachi is showing no further signs of infection (no fever, eating and drinking well, very active) we could go home and come back for an outpatient MRI. We obviously didn't argue. They are actually think it's not an infection anymore. SO then what is it? Well they believe it's Malachi's reaction to the foreign objects that are now implanted in his head (stitches and the 8 titanium plates). They believe this is an issue we will be fighting for years. Ugh. His boy is trying to get rid of those objects so his body sends white blood cells there to fight it, unfortunately no matter how hard those white blood cells fight, the titanium plates are not going anywhere. They have a few other patients who also experience this and all of them have had to go back in for multiple surgery's. Not what I wanted to hear, but we will take it one day at a time.This condition is still very dangerous because it crates an open wound which means infection is always looming. So now we get to clean the sites with betadine one a day. While we are home we can leave the wounds open, but when we are out we have to cover them with gauze and a gauze hat thing. Very attractive and draws even more attention to Malachi. They believe the wounds will heal up for a period of time but that his body will re-cooperate and try to fight it again. Which will send us back to the hospital for MRI's and IV antibiotics.

Josh and I are doing well, so very happy to be home!! We are missing Elijah who has been with our friends for the last few days. We are picking him up at noon today and we cant wait!! We have a very busy weekend ahead of us. Friday we have Nana's memorial (joshes grandma who passed away while we were in boston), a family reunion and a wedding. Not to mention Josh goes back to work next week so he has to get in his classroom to get things ready. Have a wonderful remainder of the week! I am off to relax!!