Friday, March 25, 2011

A hot mess

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.

Thursday, March 24, 2011

Just cant

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.

Thursday, March 17, 2011


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!

Monday, March 14, 2011

Odds and ends

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

Wednesday, March 2, 2011

Heard it everywhere....except here.

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 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.