Friday, July 31, 2009

Abortion, Adoption and Down syndrome

Just thought I'd give my opinion on all 3 of these topics. Yes friends, I am going to go into uncharted waters here and be openly honest. If you dont want to hear it, look away now.

Alright here goes nothing. I need to get a few facts about myself and my husband out of the way first.
*We are 100% anti-abortion. No questions asked!
*We are Christians who strive to be more like Christ daily.
*We live in a majority white community. Our town has 1200 people total and not a single stop light.
*We adopted Malachi knowing that he had Down syndrome, needed heart surgery, faild many hearing tests and that he was substance exposed. We also knew that both of his Parents were african american and that he was child number 9.

While sitting in the garage watching people look through our wonderful junk, i mean wonderful stuff, at our garage sale I couldnt help but notice the looks. People were looking at Josh and I

Thursday, July 30, 2009

1 year photo's






I FINALLY got Malachi's 1 year pictures taken. A wonderful young lady that we go to Church with is in the begining stages of starting a photography business. She did an AMAZING job and we love the pictures! These are just a sneak peek as she is still working on editing the others. I will update with new ones as they come in! Enjoy!


Wednesday, July 29, 2009

IFSP and other random thoughts

Last week we had Malachi's 6 month review for his IFSP. It went well with very little arguing (surprised huh? we were too). We added DT a few times a month and started talking about what other services we could get Malachi in. Our service coordinater keeps telling us that she doesnt want to overwhelm us with therapy's and if it is ever to much to let her know. I got ticked off at that. I want Malachi to take full advantage of every possible therapy as long as it will help him. Josh and I ready and willing to do whatever necessary to help Malachi grow but I feel like this lady (if you could call her that, she is more of a dream crushing, negitive nancy if ya ask me. But you didnt, so scratch that) doesnt want us to. Well i have news for ya, Im not a quiet reserved person, if we feel Malachi will benifit from it, you can bet I will beat the door down till he gets it. Scary, I know. Ugh, my blooding is boiling, moving on.

Malachi has mastered 2 goals this week, actually 3. He is now pushing up into sitting and getting down on his bellie (thats 2 goals) and he is also reaching for toys out of his base and holding them in each hand. Yes my friend, Malachi finallly realized he has 2 hands and they can both work independant of eachother. This is huge and something we have been working on for months. Needless to say our PT and OT were beyond thrilled! Whats next? We are working on Malachi getting on hands and knees while reaching up for toys. This will teach him how to shift his weight so he can crawl. The PT said she things he will be crawling like a champ by the end of aug. Then we get to start on walking. Woo hoo! She said to Malachi today "does your body know you have down syndrome?" I really think the reason he is progressing so quickly is because he has the drive to do so. Hes not happy just sitting and playing, he wants to move and he will figure out anyway possible to do it.

Tonight is the night we are finally going to get Malachi's 1 year old pictures taken. We are excited because they are being taken by a pro, a real life photographer who doesnt work at sears or the picture people! We are going to a park and taking then all outside. She said something about a vintage red suitcase she want to use in a few of the pictures! I cant wait and I know they will be amazing!!

1 more thing before I leave. Those of you that live around me, we are having a garage sale this friday and sat. Please come and buy our wonderful junk (I mean amaxing deals to good to pass up!)

Monday, July 27, 2009

pictures

This is Malachi decked out in his tie onesie and golf hat at our friends wedding.

Us at Lake Geneva after we got out of the lake.

Malachi with his cool shades standing in the sand watching the waves roll in.

All the way back to July 6th for his 1st b-day. He wasnt sure what to do with all the frosting on his hands.

This was taken at his circus birthday party.

Josh was trying to be artistic here..haha

No smiles from the birthday boy. Maybe because he know our OT therapist was on here way!

Sunday, July 26, 2009

"Watch this"


Malachi is getting good a his transitions from sitting to tummy and tummy to sitting. Its crazy to think that just 6 months ago he was hardly reaching up for toys and now he is not only reaching for them, but holding on to them, switching them from hand to hand, sitting up unassisted and transitioning into different positions. He amazes me. Really what else is there to say?

prayers for another heart baby

For a few months now I have been following MckMama's blog. She is currently in the hospital with her 9 month old Stellan. Please check our their blog and read sweet Stellens story. As a mom to a heart baby myself, I have compassion for MckMama and what her entire family is going through. I also know the power of prayer. So please take a momment and pray for Stellan.

Prayers for Stellan

Wednesday, July 22, 2009

The wonderful world of spit up

I just wanna know what is up with people being freaked out by baby spit-up and why I feel the need to feel bad when my child decides to share his food with others? This drives me nuts!! Guess what people, babies spit up (and not just those with Down syndrome so if you think its just because he has an extra chromosome, think again sucka!). Please tell me why I feel like I have to pretend to feel bad when Malachi's lunch ends up on someones shirt? Truth be told, its actually makes me chuckle. Perhaps its because I've gotten it so much that it doesn't bother me or because Malachi is darling and that makes his soy milk regurgitation darling as well? I'm not to sure. Be forewarned, if Malachi gets ya, I am most likely laughing (on the inside!).

One last word to all those spit-up haters out there, don't hold a baby if you don't want them to share their bodily fluid with you (pee, poop, spit or their soy milk lunch).

Tuesday, July 21, 2009

Looking forward to summer...wait...What?

We live in the wonderful land of Lincoln (aka Illinois). Normally we have 4 seasons, summer, fall, winter and spring. However, good ol' mother nature decided to skip summer and jet us right into fall. I LOVE fall, it is my favorite time of year. The reasons I love it are many including, the apple farm, cider, leaves changing color and feeling crip air while wearing a hoodie and stylish sweatpants (not the ones with elastic around the ankles, i would NEVER wear those, at least not in public). Its mid July and I found myself the last few days opting for jeans and a zip up hoodie sweatshirt! Crazyness i tell ya. To be completely honest, I am missing summer this year. Will summer ever come to the land of Lincoln? I can only remain positive that maybe next week will be different!

I hope you all are wearing your fashionable sweatpants (or daisy dukes if you state it experienceing summer!)

Sunday, July 19, 2009

Guess what? My computer is back and better than ever (literally) my wonderful neighbor was able to get my pictures off and put a new hard drive in. Now this processing beast of a machine is back up and at it! My blogging will be back full force (thank you for your applause, i know you missed me!)

Now to the subject of this post, none other than amazing, oh so cute, Malachi! Our little sweet pea is progressing wonderfully! We are starting to see his personality more and more. We know he likes to be the center of attention, when we let him play on his own he cries and looks to see if we are watching. He LOVES kisses which is wonderful because he get a lot of them (a lot may be an understatement!). Malachi is a little cherub full of wonder, excitement, love and a whole lot of attitude and he is at such a fun age where we can see all those qualities daily. He is a mover and a shaker and will not sit still. He is rolling and scooting all over the place. Of the many, many, many things I LOVE about Malachi, his eagerness to do things, all things, is my favorite! He is such a joy!! Oh how I LOVE him!

On to other important things....On July 17 2005 I said "I do" to my now husband! We celebrated our 4th anniversary on Friday! Its amazing how time flys...I will take you all on a walk down memory lane, please contain your excitement, this is a true life fairytale!

The summer going into my Junior year in high school is when I met Josh. We were on a church retreat. While swimming in the pool one afternoon we had our first convo. "I can't see" I said referring to the mixture of sun and water in my eyes. The oh so suave Josh replied "then open your eyes" and thus our relationship was born. A few days into the trip I said to my friend Amanda "im gonna marry him one day." Little did I know it was going to actually happen. We dated for many, many, many years. Josh went to college and I went to hair school 2 hours away. We stayed together and before I knew it 3 years of separation was up. Josh came down to visit me at school one Thursday afternoon. While I was learning the ins and outs of mens hair cuts josh was busy decorating my apt. with all things love. I came home to Josh down on 1 Keen with a pretty little box in his hands. I said yes! A year later I wore a white dress and josh wore a back tux. I walked down the aisle and met the man of my dreams at the end. We had a blast that day and will remember it forever. Now 4 years later we have a house, 2 dogs, a pool and a amazing son (not to mention lots of laundry, bills and yard work which no one ever told me existed in fairy tales!). I cant wait to see where we are at in another 4 more years! There is one thing I know for sure, each day is a page added to our fairytale!!

Monday, July 13, 2009

Zero, Zip, Zilch

We got some good news in the Horton house today! Malachi is off every single one of his meds!! Today the cardio doc. took him off his last dose of Lasix! Just 5 short months ago he was on 5 meds and now nothing! Its an amazing feeling and the face below says it all!

Josh and I are still talking onver the g-tube decision. We are still waiting to get answers, lots of answers. Obviously we would rather not put him through another hospital visit and surgery but we need to look at the risks with aspiration and what it would mean to him long term. We havent made up our mind either way but we are talking to other docs and looking for someone to give us a second opinion. I want to make sure Josh and I are both comfortable with the decision and that we never regret doing it or not doing it. God's timing is perfect and we trust that he will light the path and show us the way. Thanks again for all your comments. We cherish your friendship and hope to meet one day! I am a better person because all of you!!!!

Sunday, July 12, 2009

Results and a party

First I wanted to thank you all for your comments on my last post! We went to the GI doc. on friday and she confirmed that Malachi will be needing a g-tube. She wants us to have it done sooner rather than later, so we will most likely be having it done within the next few weeks. I am feeling better about it, but still fearful of the unknown. How long does it take to do a feed? What happens if and when he pulls it out (I dont believe we are opting for a button, but we have 2 months to decide that before then can put one in anyway)? The biggest issue I am having it that our Speech Therapist quit so now we are back on a wait list till they hire a new one who will work with feeding issues also. I do not want to put a feeding tube in only to wait for someone to be able to work with us and Malachi on skills to build that muscle. I dont want him to forget how to suck/swallow while we wait. There has to be a plan in place before I am willing to do it. I didn't have a chance to talk to anyone on friday about this issue so I will be addressing it tomorrow. Ugh, this is totally now where I though I would find myself, but here we are and I will try to make the best of it. Malachi is getting a g-tube and I think I am okay with it (for the momment).

Malachi had his first b-day party this weekend. It went WONDERFUL. We had perfect weather and amazing friends and family there to celebrate with us! Malachi got a TON of gifts (which were not necessary but he will enjoy playing with all of it) and spent time in the arms of his biggest cheerleaders! Malachi is a loved boy and that was obvious by the 50-60 people at out house. The kids (and adults) got to swim and Josh and I actually got to relax some (thanks to our best friendns Steph, Amanda and Will). It was a fun party and one we will remember forever.

On a more exciting note we got our computer back!!! I will be posting more often and able to share pictures eaiser! Well we are off to clean and then to another b-day pary for our neighbor!

Thursday, July 9, 2009

Please Pray

So today we had a swallow study for Malachi. While he was in the hospital for his heart surgery we found out that he was aspirating. They did a swallow study and put him on thickened formula. When he drank the thickened formula, it all went down just fine. Well his ST decided she wanted to do another one because she felt he could come off the thickener. Well she was wrong. In fact the new swallow study showed that he is, in fact, still aspirating. Ugh. So tomorrow we go to the GI doc for a "asap appointment." We are not sure what she is going to want to do, but we have a feeling a feeding tube is in our future. We are extremely sad and nervous about this possibility. We ask for you to pray, pray that Josh and I trust in the Almighty Father and his plan for Malachi. That we have peace with whatever decision is. This is a complete surprise for us something we thought we would never have to face but we are here and want whatever is best for our little man! Im needing some serious encouragement right now as this is hitting me in the gut right now! Other moms who have been through this, please leave a comment and tell me about the surgery and life after. Am I making it a bigger deal than it is? I just dont know.

Monday, July 6, 2009

1 year ago

1 year ago today Malachi was born. 2 months early, weighting only 3lbs and was cocaine positive. His mom left the hospital after 2 days and hasn't seen Malachi since. His first 3 months of life were spent in a hospital crib. He was only held by nurses and never kissed goodnight. He was an orphan, with nowhere to go. But God being the almighty Father had HUGE plans for that little baby. On November 21st at 7pm Josh and I left Rush University medical center with the love of our life and the center of our world. Malachi was finally in the arms of his mom and dad. We settled him in his car seat gave him a blanket and started the 2 hour drive home. Grandma and Grandpa W. welcomed us home with nursery water and hugs. Malachi was home and we were beyond excited. The first night was sleepless and we didn't complain once. We quickly got into a routine and life went on, the only difference was we were now a household of 3. Malachi had his first procedure in December. It was a cardio. cath. to check out his heart. The measured pressures, took pictures and got a better understanding of what was going on. We only had to stay 2 nights. We were ready for the BIG heart surgery, the one we had been praying about for weeks. Jan. 30th Malachi went in for the biggest surgery of his little life. Weight only 8lbs Malachi was hooked up to a bi pass machine and feel asleep. 3 short hours later he awoke with a fully functioning heart. We almost lost him 5 days after surgery, but God protected him and 3 weeks later we got to come home! No more heart monitor, a few less meds. Life was good. We have had 3 more hospitalizations since then. Through it all Malachi has remained a trooper. He is strong, gentle, sweet and sometimes stubborn. He is a miracle and a gift for God. Josh and I are so blessed to have this little stud in our lives! We love him and everything he brings to our family! We can't wait to see what the next year holds! Happy 1st Birthday Malachi. We love you to the moon and back!!!

We have been so busy getting ready ready for Malachi's birthday party this weekend. We are expecting 70 people! Yikes! Josh and I realy wanted to make this a celebration of life, there have been 3 times that we thought we were going to lose Malachi. Our house and yard have been neglected so we are running around cleaning, weeding and planting flowers. We will have lots of pictures to post from the big day! I am off to bed, every bone in my body hurts.