Focus on the positive

Last year Malachi got the RSV vaccination Synnergis (not sure how to spell it.) Because he was born 2 months early, and weighed only 3lbs (not to mention all of his medical conditions) he was a shoe in for the monthly shot. Because he is a Foster child he gets the state medical card which covers 100% of all his medical. This has been an AMAZING gift to us, as we have not seen 1 single bill for any of the 180 days spent in the hospital in his first year. Not a single one, did you read that correctly? Zilch, nada, zip...NOTHING. Josh and I are so incredibly grateful that this financial stress has been taken care of. All his other medical bills have also been taken care of. Prescriptions, doctors appointments, everything related to medical. Well, this year his peds doc decided she wanted him to have the same RSV shot this year, just in case. So she put in the order to get approved by the sate, a few weeks later I got the denial letter. Ugh, just another thing to add to my plate, another thing to fight for. I have begun the process to appeal, but it is a pain in my rump. Part of the process requires me to get a written letter from the pharmacist stating the cost of the shot if not put through insurance. Haha, listen to this. Because Malachi is 18lbs and the dosage goes by weight, Malachi's monthly shot would be $5,800 for 1 shot! And i believe they give a shot each month for 4 or 5 months! YIKES! So please be praying that we get approved, because i surly cannot afford $5,800 a month for a shot!

Poop

For those of you that have older children, you know that entertainment that can come from poop, fart or pee. This video of Malachi shows that children of all ages think poop is funny.  Turn your volume up, your gonna wanna hear Malachi laughing!

POOP

Im to sexy for my shirt....

This weekend Malachi is going to be in a fashion show. Gigi's Playhouse ( which is a Down syndrome awareness center in IL that is now starting to be opened in communities across the US and overseas.) is putting on the second annual fashion show to raise money. I am carrying our little fashion savvy man down the catwalk this Sunday. There is also a brunch served and a silent auction. We are looking forward to seeing all the kiddos (and adults) with Down syndrome strut their stuff in clothes from Gymboree, Justice and Macy's. I will be sure to post pictures on monday.

For all of those that wish there was a Gigi's in your community, I've got great news. There can be!! There are Gigi's opening everywhere including California and India!!! Gigi's is an AMAZING place that offers so much such as literacying, baby sign language, sign language for older individual, open play, holiday parties, daddy and me time, skill builders, and so much more. We have be so extremely blessed to meet new family's walking the same path as us. If you are interested go check out their website!

I talked to our Service coordinator today about ST. She is going to call around, but she thinks she can find someone who will be willing to come to the house. She said she was going to call the lady and then call me back tomorrow. Then she had the nerve to tell me "don't worry Erin, we will get this figured out." You are damn right we will get this figured out and it will be figured out sooner rather than later. Malachi had DT and OT today at the same time, we discussed the feeding issues with Malachi and how they can't move forward with fine moter skills until he can eat since that is one of the major ways they work on it. Malachi's case worker (because he is still a ward of the state) was there visiting at the same time. She was able to take some notes and said she was going to make a call to the head Educational Liaison at the agency. He is the one who made the last call to Early Intervention and got our first service coordinator fired for breaking some laws. He doesn't mess around.Ah, he is my hero. I will be sure to keep you all updated on the drama that is my life.

Malachi sitting on the infield at Wrigley, home of the Chicago Cubs. My husband is a die hard Cubs fan so we surprised him with a tour of Wrigley Field. This is a memory that will last a lifetime!

Get ready...

This is your warning...this post is going to be full of anger, frustration and possibly even a swear word.

As many of you know I have been fighting with Malachi's service coordinator since day one. She is the one we who organizes all of Malachi's evaluations and write his IFSP. Our first IFSP was January 13, 2009. There we all decided Malachi needed weekly OT and PT, monthly speech and FVT.  We met again in April to all weekly DT into the mis. Everything with OT,PT, DT and FVT has been great! We love our therapists, they show up when they say they are (with one being late most of the time) and I think they have done an amazing job with Malachi and have been nothing but helpful! However since January, Malachi has has only 3 ST sessions and 1 evaluation. Normally I am a pretty easy going person however today when I called to schedule Malachi's October ST session (they are supposed to call me, but like usual I NEVER got a call and being the busy mama I am, I completely forgot to call them but can you blame me? we have 3 therapies a week, plus sign language class and a play group no wonder I forgot) she told me that her next available appt was Nov. 6th which is a friday and doesn't work for us. She told me that J (our ST) is only available in the mornings, which doesn't work for us, since all of our therapies are in the morning along with play group and sign language. I asked if we could have 2 appotments in November since we will have missed our October appt. and she told me no. WHAT THE F?? (don't say I didn't warn you!! I'm not the swearing type, but seriously people??!?!?) I hung up without scheduling an appt. I have told everyone I will go where ever I need to, to get Malachi therapy. Yet they continue to send me to the one place I lothe (RMH) more than anything for less then poor therapy. I refuse to go there any longer, Malachi deserves better.   In Malachi IFSP , which is a LEGAL document, it states that he is to get monthly ST...and he is not and that makes me pissed. So, I have placed a call into his service coordinator, a not so nice phone call at that. She is out of the office today (go figure this lady has more days off then anyone I have EVER met) so I am giving her till tomorrow at 2 to call back, if I dont hear back from her....you dont even want to know what is going to happen. I have already gotten a lawyer in on this before (thats how we got to the top of the list for therapy to begin with) and I will do it again if need be. Malachi has a right to these therapies and since he can stand up for himself, it's my job to do it for him. I will fight tooth and nail to get him what he needs and deserves. Grrr, be scared of me, very scared! If there is one thing I have learned having a child with special needs, it's that sometimes it takes a little force and a squeaky wheel to get something done. I am off to read my rights and Malachi's IFSP. It's time to update my memory so I can fight with everything I have....ready or not, here I come!!

Anderson Japanese Garden

This past weekend we spent some time at a Japanese Garden close to our home.It was a VERY cold day, but we enjoyed looking at the  different gardens. It was beautiful and I cant wait to go back in the spring!! These are a few picture from the day.

A trip to the ER

So last week we had court in Chicago (for adoption stuff). It went really well and we were done after about 5 mins of talking with the judge. We were in a great mood and decided to stop for lunch on our way home. We were eating our yummy salad's when Malachi started straining really hard and then crying. Josh took him to change the diaper. He was in the bathroom a long time and I was getting worried. When he came back out he had the diaper still in his hand, I knew something was up. He told me that there was blood in Malachi's stool. I freaked out and we took him to the closest ER (which happened to be the one that a VERY good friend of mine worked at). They got us in very quick and took all the vitals. I went through the entire list of surgery's and medical conditions....then the doc. looked at the diaper that my husband saved. There was def. blood, but the doc felt like it was coming from an external location. Sure enough he strained to hard and little cracks formed. My poor baby, we were sent home with a RX for stool softener. Im sure you all really wanted to know this, but I thought i would share! haha And just in case you were wondering he is doing just fine now!

Ellies Gift

Just wanted to write a quick post about a blog called Ellies Gift. Its a blog where parents of children with Down syndrome can share their story. Every few weeks a new family get their chance to share and this month it was our turn. You can also look back over the previous kiddos and read their story. It's a wonderful place to get encouragement and see that children with DS are no different. Please check out Malachi's story and the stories of many others!

Ellies Gift

Makin me laugh

When I'm having a bad day, all he needs to do is smile to make it all better!! Don't mind all the boogers and spit up, this is what he looks like majority of the time after all!!

Buddy Walk

Wow, I haven't written a real blog in ages! Sorry about that. Things have been crazy here, between the buddy walk and Malachi being sick, I haven't had much free time. Speaking of the buddy walk...it was AMAZING! This past Sunday we walked to raise money for Down syndrome awareness and research. We gathered a team of 40 people to spend the day with us and walk for Malachi. We has team shirts made and provided lunch for those walking on our team. We ate, we played, we talked, we laughed and we all had a wonderful time. The theme this year was "celebrating our hero's." It was truly a magical day! The only down side, it was cold and when I say cold I mean it didn't get out of the 40's all day. But we all survived,a little bit of cold weather isn't enough to keep us in!! Here are a few photo's from the day. I am working on making a video with them all, I will be sure to post it on here when I am done with it!

Me, Josh and prince Malachi right after the walk

Part of our group playing with Malachi.

Other than the buddy walk, we have been keeping busy. Malachi has had a nasty cold and most nights have been ending up in bed with us at night, sometime that I said I would NEVER do. Ha, the last 3 nights after an hour of crying, I gave in to him and let him sleep with us. Ugh. I need my sleep too, thats how I keep justifying it! Today I took him to the pediatrician  and she did an RSV swab just to be on the safe side, but she is pretty sure its just a virus. She also put him on an antibiotic and an antihistamine just in case. I am praying he sleeps better tonight and that he starts feeling better soon!

He has started really pulling up on everything and even started cruising a little on the couch. Its so fun to watch him get excited with his new mobility. We will be getting fitted for his new ankle braces soon. Unfortunately his feet are still very week, so he will be needing a more substantial brace. His will go up the back of his calf which will also prevent him for locking his knees and resting in his joint rather than using his muscles. He will have these braces for 6 months and then we will reevaluate to see if he can switch to a sure step style brace. Either way, I am excited that he is making such great progress. It seems like once he got crawling the correct way, he has just taken off. He is now signing more, mom, dad, dog, milk and eat. He ha also started doing peek-a-boo with his own hands and he can wave high and bye. I am starting to see more of his personality too which has been fun. I know he is going to be very stubborn not to mention a little ham. He LOVES to be the center of attention and likes getting the crowd laughing! What a blessing he is in our lives!

How are you all doing? Any new and exciting events in your life? What new skills has your child learned? Or what new things have you learned from your children? Ah..so many questions, so little time!

Oh man

Wow, I totally missed a few days there! Things have been crazy busy getting ready for the buddy walk. It was today and we had a WONDERFUL time!! I will write a detailed post later, right now...I am thawing and spending some quality time with my little man and big man!!

31 for 21... Day 8

Difference is an Artists Game

31 for 21... Day 7

Therapy, Therapy and more Therapy! If you have a child with down syndrome you totally understand my love/hate relationship with therapy!Malachi is currently getting weekly developmental therapy, weekly physical therapy and weekly occupational therapy. He also receives monthly speech therapy and monthly functional vision therapy. Soon we will be adding in some music therapy too. Yikes! Keeping track of all of this is sometimes overwhelming but with the help of my handy day planner i have NEVER missed an appointment. I enjoy being an active participant in his therapy and learning right alongside Malachi. We LOVE all of his therapists also, which makes all the difference in the world.

My hate come in when we have to deal with wait lists and insurance issues. Or we have to wait forever to get equipment. Our PT today FINALLY decided which ankle braces Malachi will need...now we wait for at least 8 weeks for them to come in. Untill then? Malachi will be wearing a pink loner pair (thats all she had). This all leads up to the question, Who is your favorite therapist and why??

look for my answer at a later date.

31 for 21... Day 6

This is a picture of Malachi and his best friend Bryson. Bryson is the son of Josh and I's bet friends, Amanda and Will. Amand, Will, Josh and I all met the same weekend in high school at a youth group retreat. We ended up forming a friendship that is unlike any other we have. We were matron of honor and best man in their wedding, as they were in ours. We cherish our friendship and are so excited that we have children the same age. Malachi is 1 month older than Bryson, believe it or not. I wanted to do a post on friendship, and what better than the friendship between Malachi and Bryson. I know, I know, they are still so young. But I am confident that they will grow up learning from one another and when they are old enough, I am sure they will pick up chicks together and play jokes on their dads together.

Malachi and Bryson's friendship will be unique. The reason being that Malachi has Down syndrome, and Bryson does not. The two could not be more opposite in every sense of the word but the joy we see in their faces when they are together tears down the walls of difference and builds up the windows of love. Malachi will teach Bryson to be accepting and loving towards all. And Bryson will teach Malachi that he can do anything he puts his mind to and that he is perfect just the way he is. This friendship will blossom into a beautiful flower and we, as their parents, can't wait to tend the ground and plant the seeds for this flower to grow. We will water it along the way and provide stability when the winds blow. And when the time is right we will stand back and watch this flower thrive. There is nothing more beautiful than a friendship that lasts.

31 for 21... Day 5

I have many dreams for Malachi. One of them being, that he will give and receive love. Not only love from friends and family, but true love like his dad and I have for each other. Love that is romantic, fun and silly. I have dreams that Malachi will have a girlfriend (possibly many, he is a ladies man ha) and that he will bring her to holiday celebrations. I have dreams that Malachi will go to prom with a lady and that he will get his first kiss at the end of the night. I have dreams he will stroll through the park holding the hand of someone he has fallen in love with.

Will Malachi ever know this kind of love? I don't know. But I have dreams that he will. People who don't understand will probably think I am crazy, but I believe people with Down syndrome have the ability to fall in love and have a wonderful relationship. I have dreams that this will happen for my son and possibly one day I will get to experience the same joy my mother did the day I got married.

Check out the following video, proof that true love have no limits or boundaries!
Josh and Buradette's wedding ceremony

31 for 21... Day 4

November 21st will make our 1 year anniversary for Malachi's "gotcha day." We are preparing to spend the day  celebrating all things Malachi and reflecting back on the past year. I can't wait till he is older and I can explain to him the events that lead up his homecoming all the emotions and preparation. We will look forward to celebrating this day for Malachi's entire life.

We also have another exciting day coming up soon.... ADOPTION DAY. We go to court this month and there will be terminating parental rights of Malachi's birth parents. And then, we move into the official adoption process and at the end of Feb. things should all be finalized! We can't wait to celebrate the day Malachi officially becomes a Horton!!!

Happy sunday to all!!

31 for 21... Day 3

Just a quick post today. Please check out the following link. There is no better way to educate the world than to let the world in our homes to see that our Children with Down syndrome are like any other child. 


The Specials

31 for 21...day 2

We are into day 2 of Down syndrome awareness month. Today I want to share a little bit about Malachi and his love/hate relationship with sign language. As a parent of a child with Down syndrome, I understand the importance that sign language will play in Malachi's development. His speech will be delayed, so sign language will be vital to his communication skills. We started teaching Malachi sign language about 3 months ago. It has been a VERY slow process and at times it seemed hopeless. We would do the signs for more, eat, milk, drink and all done constantly and never saw any effort for Malachi wanting to do it. Then one day he started signing more...and then a few weeks later he started signing milk...we are still working on eat and dog, he will do it about 50% of the time. It has been so fun to watching him communicate a few basic needs with us. We will continue to work on sign language. A great resource we have found is the Signing Time DVDs. Malachi and I watch one once a week and pick a few new signs to add to our list. Its a fun video which incorporates sign language with songs. If you haven't seen or heard of it, go check it out, you'll be hooked. Sign language is a great skill for kids without special needs to learn as well, since children can understand language before they can verbally speak it. Here is a little video of Malachi showing off his skills...

Sorry, he is not wanting to participate right now, check back later for a video!!

Down Syndrome Awareness month...Day 1

 For those of you that don't know, October is Down syndrome awareness month. To help raise awareness I will be posting each day this month. I hope you can take the challenge also and help give a voice to these AMAZING children (and adults). I look forward to growing in knowledge with you all as I try and post helpful information. I encourage people to ask questions, on my family, Malachi or Down syndrome. No question will go unanswered! I will start off the month with a Down Syndrome fact sheet taken off the NDSS website.

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
  
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
  
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
  
• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.