Thursday, December 1, 2011

23 hour observation...wonderful.

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! 

Thursday, November 24, 2011

While we were away...

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.

Tuesday, November 15, 2011

Burrr...

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

Friday, November 11, 2011

ENT..ABR...OMG!

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....

Monday, November 7, 2011

Please be patient!

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!

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!

Tuesday, November 1, 2011

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

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!

Friday, October 21, 2011

Speech

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!!

Thursday, October 20, 2011

Conference time!

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!

Tuesday, October 18, 2011

Elijah





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.

Monday, October 17, 2011

I suck.

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!

Monday, October 10, 2011

The wheeze

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?

Tuesday, October 4, 2011

A little about Elijah

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?

Monday, October 3, 2011

That time again

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.

Wednesday, August 31, 2011

Wednesday, August 24, 2011

What do you do?

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....

Tuesday, August 23, 2011

While I blog

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!


Wednesday, August 17, 2011

Oh the places He'll go....

"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.






Tuesday, August 2, 2011

Under a rock

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!