Monday, August 30, 2010

Camping

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!

Friday, August 27, 2010

Double trouble

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! 


Wednesday, August 25, 2010

People who "Are"

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.

Monday, August 23, 2010

Calling all mammas

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?

Wednesday, August 18, 2010

Ive got nothing

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! 

Thursday, August 12, 2010

Lets Roll

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!

Tuesday, August 10, 2010

1st bath in the BIG bathtub

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.

Monday, August 9, 2010

I'll take LOVE for $500 Pat

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.

Wednesday, August 4, 2010

Surprise

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!!

Tuesday, August 3, 2010

Our new room

Late last night we were moved out of the ICU and onto the floor. Our new room is amazing! 2 pull out beds and we are both allowed to sleep in the room with him. Its a private room with a shower and fridge!! Ahhh... no more glass doors not more vital checks every 2 hours...we got 4 hours of uninterrupted sleep! There is not even a monitor in the room!! I almost feels like home. The plan is still the same, MRI tomorrow, if the results show that there is no change we get to leave either tomorrow night or Thursday. Keep those prayers coming!

Ive got exciting news. I entered a photo of Malachi to the NDSS Buddy Walk in New york. It was chosen!! So his pretty smile will be shown on the MTV plasma screen in September. We are trying to figure out if financially we can get there to see it!! We were going to enter Elijah too, but hes at an age where most of his pictures consists of closed eyes and drool!! We are going to enter him next year when we can actually get a smile out of his sweet little face!

Monday, August 2, 2010

"The plan"

Thank the Lord we finally have a "plan." Don't get to excited as "plans" in the PICU change from second to second. So here are the "plans."


Neurosurgery is not even sure if this is an infection we are battling. All the cultures have come back negative thus far. They are still treating him with antibiotics just in case. We are supposed to be moved out of the PICU tonight sometime and out to the floor. We will continue doing what we are doing tomorrow and then on Wed. he will have a repeat MRI/MRA (yes again we have to pray for no strokes). If the MRI shows no change or if the fluid has gotten less we will go home with PO antibiotics. If there is more fluid Malachi will be having brain surgery later this week.

The nurses at this hospital are amazing!! We seriously haven't had a bad one. I even got a chance to visit with a few, we met when Malachi was in for the stroke, last night after he fell asleep. It was like being welcomed home greeted with a hug and a smile. As much as I hate being here, hate that Malachi is going through this, I know this is where God wants us to be at this time. I have met a few families who are going through a lot right now, I continue to pray that God uses me and Malachi to touch their lives. Here in the PICU we can be a light for people going through some very dark days!! I am thankful for that!!

Lets see how long this "Plan" sticks!

Sunday, August 1, 2010

The verdict is in...sort of

Well Malachi's MRI went great. They were able to put him to sleep with Propofal (Michael Jacksons drug of Choice) and he was able to breath fine on his own which means no intubation!

The verdict is in and there is no abscess...great news. But with great news comes the bad news...they still don't know what it is. Is it fluid? Is it infected fluid? They don't know. So Malachi's MRI images will be sent off to Boston. For now we remain here in the ICU while he receives IV antibiotics. We are not out of the woods yet. If they do believe it is an infection, they will need to re open his incision and skull to clean it out. If they have to do this, there is a good chance the cleaning will interfere with Malachi's first surgery. My heart sank just writing that. We would be back at square one (possibly). The though of this is overwhelming and something I just can't bear to think about.

Infectious disease will be in tomorrow to see how he is doing as well as Dr. Nikkos and Dr. Hann.

I beg you my dear friends, please pray for another miracle for Malachi.

Just Keep swimming

Well, Malachi is back in the hospital. We brought him into the er last night and the admitted him to the PICU. They are worried that an abscess has formed on his brain. He had a ct scan last night which showed that his right incision was okay but there were some questions about his left. We are going down for a sedated MRI right now. I will update more later.