Wednesday, December 30, 2009

1 in 3

We met this week with our adoption agency to update our home study. She sent our letter, pictures and home study off to the other agency. Now we wait for the Birth mom to make her decision!! We were told they have narrowed it down to 3 families. So we have a one in three shot at this, I like our odds. Please keep praying, we are hoping to have a decision by mid next week!!  Yikes

Sunday, December 27, 2009

Re-cap


It has been a rainy, icey, snowy few days here. Thankfully it didn't hinder our Christmas plans! We had yet another WONDERFUL holiday with our families. Malachi enjoyed opening about 2 gifts and then lost interest, especially after we took the paper away so he wouldn't eat it. But we had fun opening his gifts for him. I think we have had more fun playing with his new toys than he has.


This was the first year Josh and I really spent money on each other. Let me tell you I was spoiled. I got a Keurig AND an Ipod Touch not to mention lots of other little things!! Josh got a bunch on video games and a few seasons of Lost! It was so much fun to spoil each other this year, I REALLY enjoyed giving him lots of things he didn't need. Hopefully next year we will be in a position to spoil each other again!

We are also spoiled by our families!! Man I tell you, it sure didn't seem like people were cutting back. Joshes mom and dad got us a Wii (totally un-expected), My mom and dad got me a vacuum cleaner and Josh a Nintendo DS. We also got enough gift cards and cash to buy a new tv for our bedroom (we like to watch movies in bed) along with some Wii games and accessories. And that was just the big ticket items, we got cloths,books, movies, and some other fun things! We are so thankful for all of these things but the thing we enjoyed most was spending time with our families laughing and making memories. Those things are so much more important than all the "stuff." But the most important thing is to remember Jesus is the reason we celebrate Christmas. We truly had an amazing time and are thankful for all the gifts!!

Wednesday, December 23, 2009

Red and Green

I can't believe Christmas is almost here!! Tomorrow afternoon we will be going to my mom and dads house for a day of family fun. Around dinner time my extended family will come over and we will enjoy dinner together. My most favorite part about Christmas Eve with my family is playing the white elephant game for house. We don't buy just one white elephant gift, we buy multiple so we can play all night. It's always a wonderful time full of laughter! We can't wait, we've got some good ones this year!

Christmas day we will wake u and open presents, just the three of us. This year Malachi will actually be able to open his gifts, we cant wait to take pictures. Josh and I actually got gifts for each other this year. I am so excited to see if he likes what i picked out! My parents will come over Christmas morning for breakfast before we head out to got to Joshes brothers house. There, we open presents eat a late lunch and enjoy watching the kids play with all their new toys.

We wish you all a very Merry Christmas! Give all your kiddos a hug from us!!!

Tuesday, December 22, 2009

Whats in a name?

     My name, if you don't know, is Erin. A strong Irish name. My parents picked it because, at the time of my birth, it was uncommon. I have grown to like my name, but it would not have been my first pick if I were given the choice. I'm not a huge fan of unisex names nor am I a fan of common names. My children will never be names Michael, Emma, Katie or even Josh (all are perfectly fine names, just not my cup of tea!). I like unusual names, ones that are not often found on a teachers roster or on a key chain at Disney. Malachi, for example, is unusual. Hence the reason we chose it for our son. We adore the name Malachi but even more importantly is the meaning of Malachi. Messenger of God. Perfect for a little boy who has taught us all to Love like Christ.
    As Josh and I sit and think about this little boy who may be joining our family, we can't help but think of names for him. Unusual, meaningful and strong names for this little child. I am asking you, dear friends, what are some names that you like for sweet boys? Here is our short list....

Keaton (Joshes favorite)
Rylan (my favorite)
Nolan
Easton
Camdon
Emmerson

What do you think? any stick out to you? Send a quiver down your spine?

I think we like the "on" ending!!

Monday, December 21, 2009

HELP cont....

In my last post I talked about the help we needed financially. I am so amazing at people's generosity, we got an e-mail today that our agency is going to waive the ENTIRE cost of this adoption!! Did you read that correct? They are going to wait the cost of the ENTIRE adoption!!

WOW. I am speechless.  I'll let you process what I just said for a moment.

That fee that was just waived for us is at least $10,000. What an amazing Christmas gift! God is good, sooo good.

What now? Well, we have to scramble to get a letter written describing our family and our desire to adopt children with special needs. We need to meet with our case worker and update our home study and pray. I believe there are 3 other families interested and the birth mom gets the final pick.

I am still in disbelief that such a huge cost has been lifted with the snap of a finger! Only God can move mountains like that! We will step through the door that has just been open and continue to give all the Glory to God, pointing our hearts toward the only One who is bigger than it all! I don't why we have been chosen when we are so unworthy, but I am thankful, thats for sure.

Friday, December 18, 2009

HELP

So, I spoke with JM (Our adoption worker for Malachi) briefly today. She said all parties are willing to work on adjusting the finances. There is a little glimmer of hope out there for us! We are going to continue to pursue this adoption with open hearts and minds just like we did with Malachi. Josh and I both trust that God will provide one way or another. Josh and I have been called to speak for these children who don't have a voice. We believe our purpose here on earth is to show Christs love to these sweet orphans. Our eyes have been opened and we can not turn away. Forward we march, willing to follow Christ where ever he leads us.

Anyone know how to set up a fund for donations on a blog? I NEED HELP!!!

Thursday, December 17, 2009

My Heart Breaks

Why do adoptions have to be so expensive? Why? I just got another e-mail from our foster care agency about a 6 week old little boy who was born with DS. They are looking for a family to adopt him. He is not a ward of the state, his parents simply can not care for him and his medical needs (heart surgery needed, NG tube fed all the usual for kids with DS). The agency needs $3500 for a home study and then $400 for each follow up visit after the placement. Ugh. My heart breaks for this child and if we had that kind of money we would scoop him up in a heartbeat! For now all we can do is pray. Pray for God to move the mountains that lie in the way, prayer for finances to magically appear, prayer that they can find a family for this sweet little boy and prayer that one day adoptions become more affordable for families.. I HATE that finances prevent children from going to perfect homes. We would gladly take donations :) because im sure you all have money burning a hole in your pocket!!

Tuesday, December 15, 2009

New hardware in, old hardware out

Malachi has surgery today in Madison WI. We drove up last night and stayed in the Ronald McDonald house so we could be close to the hospital the following morning. We were able to enjoy our evening last night and all three of us got a good nights rest. This morning we were able to get up, shower, eat breakfast and play before we had to head over to the hospital. Malachi's surgery was scheduled for 1:55pm. They took him back right on time. They knew going in the he needed new tubes and his adenoids taken out. His ENT also wanted to do a more detailed look in his mouth while he was asleep to determine if he needed his tonsils out. About 40 mins after they took him back we were told he was done and that they didnt take his tonsils out because they were not enlarged. Recovery was a little hard, I could tell he was in lots of pain but with a little dose of morphine he relaxed enough to eat. After he got some food in his tummy he was better. About 2 hours later we were discharged! Woo hoo no over night hospital stays, which makes me one very happy mamma! So we are now home and Malachi is sleeping (restlessly) in his own bed. And I am on my knees thanking God for a successful and uneventful surgery!!

Sunday, December 13, 2009

Brothers and Sisters





These are Malachi's siblings, Gwen(2), Raven(3) and Josh(5). Today was the first time we had all 4 of them together and it was amazing. I just sat there in awe. The journey these 4 children have been on is nothing short of Amazing. Lets start with Josh (the oldest) He was found in Chicago in a dumpster, left to die. Next is Raven, she was born 3 months early weighing only 1lb 7oz., the fact that she is here today is a amazing. They were told she would never hear, talk or walk. Today she is thriving and defying the odds. The only outstanding complications she has is SEVERE asthma. Then there is little Gwen, born EXACTLY 10 months after Raven weighing 4lbs 10oz. (the biggest of them all). She too spent many weeks in the NICU due to drug exposure and under developed lungs. Then there is Malachi who is exactly 1 year younger than Gwen. We all know Malachi's story. There is one thing we know for sure, these kids are fighters and although they got a rough start in the world, we can proudly say today they are all doing amazing. Malachi and the 2 girls have the same dad but we think Josh has a different day. They are all soooo cute and well behaved.

We are so thankful we got to spend our sunday with them and their parents. On the way home I was thinking about this journey we have been on, all the people we have met and I was brought to tears. What would life be like if Josh and I would have said no to God's call to be Malachi's parents? We listened, although we knew it wouldn't be easy, and have been blessed with a new family. We talked today about family traditions we wanted to start with the kids, we talked about what we wanted their relationships with each other to look like and we talked about our new family. I can't wait to see them all again, to hug them and kiss their sweet little cheeks.

As we find our selfs celebrating Christmas with our loved ones please remember to say a prayer for Malachi's birth mom, she has made some HORRIBLE decisions in her life, but if it were not for her, we would not have Malachi or our new family. Pray that she is safe, warm and healthy. Pray that she knows God and understand that He has forgiven her and that one day we can all celebrate, together, as family in Heaven.

Tuesday, December 8, 2009

Yearly IFSP

Yesterday was the big day, Malachi's yearly IFSP meeting. Josh, Malachi and I gathered with every single one of Malachi's therapists (Yes they were all there, in person, sitting at our kitchen table. I demanded this, and they obviously listened and have learned that this momma is not going to settle) to discuss his progress, goals for the next 6 months and any issues we were having. The wonderful new is that Malachi had advanced leaps and bounds in the past 6 months especially in gross motor. He still needs to work on the fine motor (30% delayed), and speech (verbal at 3 months comprehension at 10 months). His gross motor is amazing, he has normal muscle tone (which is virtually unheard of in kids with Down syndrome) (aside from his ankles and feet, that is) and if he wasn't diagnosed with DS he wouldn't be eligible for PT. WOW. The meeting went surprisingly well. Speech was increased to weekly, thank God! Here is what his schedual looks like.

PT-Weekly
OT-Weekly
DT-Weekly
ST-Weekly
VT-Monthly

We also discussed adding music therapy to the mix, however there is still a wait list, so it may be awhile till we start that, but it was also be weekly when it does start. Wow, we are going to be busy!! But I will do anything to help Malachi be the best he can be. He is simply amazing, and our little hero.

We are preparing for surgery on Tuesday next week. We called and got our room at the Ronald McDonald house in Madison for the night before. We are hoping to go home the same day as surgery, but are planning for longer just in case. I will be pushing for his tonsils to be taken out. He is 17 months old and still not eating solids, he gags. I think maybe his tonsils are to big and they don't allow room for his food. We will see that Dr. M has to say. If they do get taken out, we will surly have to stay overnight.

We are preparing for a major snow storm to hit tonight. The weather man is predicting 12 to 18 inches of snow. Ugh. I love the look of snow, but hate driving in it. Since my husband is a teacher, it looks like he will be having a snow day. Maybe we will take Malachi sledding??

Sunday, December 6, 2009

Sick

I have been missing in action! Malachi has been sick since thanksgiving, hes been the the pediatrician twice and was treated with antibiotics, tamiflu and some antihistamine's with no success. We have has lots and lots of thick boogies and some coughing but never had a fever, until yesterday morning. I took it right when he wok up and it was 100.3, I then had Josh take it about 20 mins later and it was 101.6. He was extremely agitated, like i've never seen. I was hold him trying to comfort him and he literally was crawling up me and shaking. I knew something was wrong. He was winey and was having trouble breathing. We decided to take him to the ER. They got us in right away and his fever was over 104. The nurse gave him Tylenol right away and shortly after he had a breathing treatment.  The doc. wanted x-rays to check for fluid in his lungs. Those came back negative, so they decided to test for RSV. About and hour later we got the results and they came back positive. Ugh. I thought for sure we were on our way to being admitted. The doc came back in and said he was sating well (in the mid 90's), eating well and peeing well so there was no need for us to stay. Since this isn't our first rodeo he sent us home with breathing treatments and instructions to return if anything was getting worse. By the time we got discharged his fever was down and he was acting more normal.

Malachi woke up this morning feeling much better. He has no fever and is crawling and playing. I am hoping he can get over this quickly.

He is still scheduled to have surgery on the 15th. We went up to the hospital last week and met with the NP, education nurse and anesthesiologist. We are hoping to be discharged the same day, but if they decide to take his tonsils out, then we will be there for the night.

Thats about all. Have a wonderful rest of your weekend. We are skipping church and staying home watching movie all day!!

Saturday, November 28, 2009

Turkey Week

Wow, I can't believe Thanksgiving is over! We had a WONDERFUL time celebrating with family and friends. Our thanksgiving started Sunday of last week when we gathered with my husbands side of the family. We always have a ton of yummy food and lots of laughs, this year was no different.

This is Malachi with his two cousins Ashlyn and Ethan.


Malachi was clearly VERY tired and passed out just like this!

On thanksgiving we celebrated with my side of the family. We again ate lots of wonderful food and enjoyed playing Wii with each other. There is noting quit like a bowling tournament in the comforts of a house! We had a blast. I am so thankful that my mother in law and father in law were able to join in my families thanksgiving day festivities.

Josh and My brother being goofy and mashing the spuds.


Malachi finally wearing his glasses! Hes so cute!


My side of the family!

The day after Thanksgiving we dropped Malachi off at his grandparents for a sleep over and we headed to Chicago with a bunch of friends. We went to Daily Plaza to see the Christmas Tree and enjoy German goodies at the Kriskringle Market. While there our friend got engaged!! (Congrats Meg and Will!) We walked around for a bit, looked at the windows displays at Macy's and then ate dinner at the house of blues. We had a WONDERFUL time with our friends and look forward to doing it again next year! (Thank you grams, gramps and Nana ((Malachis great-grandma who was in town for thanksgiving)) for watching stinky so we could go out!!)



Josh and I by the tree, man was it cold!!


Me with our popcorn and boot of hot chocolate!

It was a wonderful week and I am looking forward to next year already! Did I mention Thanksgiving is my favorite holiday?

On to different news, Malachi is going for surgery on December 15th. We go Thursday this week for some pre-op stuff. While we are thankful he is getting it done before Christmas we are praying for no complications so that we can be home for Christmas. Nothing ever seems to be easy with Malachi (medically speaking) so we are cautiously going into this with no expectations. We shall see what happens!

As I type this I am sitting next to a warm fire place and a Christmas tree full of lights. Malachi is sleeping soundly in his crib and my hubby? He is watching a move next to me. This is the perfect way to finish up a very busy week!! We hope you all had a great holiday!!

Monday, November 23, 2009

Not again!

Malachi and I woke up super early and headed into the American Family Hospital in Madison, WI today. Our mission? To figure out why Malachi can't pass a hearing test. We had a meeting with the audiologist first. Their determination? Fluid. She did make a comment about never seeing a charcoal colored tube before this bit of information will become important later in the story. She told me that before we could do anything we need to get his ears cleared first. We were then taken to a exam room and waited to see the new ENT. He came in and had a little look in Malachi's ears. His determination? Both tubes are fully blocked, and one is out of place and resting on his ear drum. I instantly became pissed, just 2 weeks ago we were at his normal ENT and he said everything was perfect, they were fully open and even commented me on how well we were doing at keeping his ears clean and dry. Is it reasonable to expect that in 2 weeks things could have taken a complete 180? Dr. M (the new ENT) thinks not, and believes its been like this for some time. The old ENT will be hearing from me, and I can guarantee they will not be nice sounds. Oh and the reason the audiologist has never seen charcoal colored tubes? Well thats because they don't make charcoal colored tubes, that was just the amount of junk backed up in my poor sons ear.

So frustrated.

We then discussed the amount of snoring Malachi does and Dr. M said "then lets take out the adenoids!" I got more accomplished in the 1 hours I was there then in the entire year Malachi has been seeing Dr. F (the old ENT).

The Plan.

We will be going back to Madison (Dr. M is our new PERMANENT ENT) and Malachi will have new tubes put in and his adenoids taken out! Dr. M is also going to look at his tonsils and if he thinks they need to come out, he will just do it while Malachi is already under. Dr. M is amazing, simply amazing.

Sometime in the near future (before Christmas) we will be back up in Madision checking into same day surgery and handing Malachi over to be put to sleep where he will get some new equipment and have some useless equipment removed. Not again.

Being that it is so close to Thanksgiving I decided to end this post with some thankful thoughts. I am thankful for Malachi and all his medical complications, each one has given me a chance to show Christs love to nurses, doctors and support staff. I am thankful for skillful surgeons and nurses who have all placed their loving hands on our sweet boy. I am thankful that we live in a country where some of the best doctors practice. I am thankful that Malachi's medical needs have been taken care of one way or another.



I

Saturday, November 21, 2009

1 Year ago!!!

One year ago today Josh and I woke up full of anticipation. It was the day we had been waiting for, for months. It was the day we were supposed to bring our son home. Unfortunately Malachi was still in the hospital for a UTI. He wasn't eating well and the docs wanted to keep him longer to monitor him. Our dreams were shattered when we were told he probably wouldn't be released and therefore we probably wouldn't be able to bring him home. We held out hope and brought the diaper bag and put the car seat and stroller in the car just in case. Josh and I had to drive to Chicago to complete some training at the home Malachi was living in. The home was for children who were medically complex, it was sort of a holding place for the kids before they were placed in their new foster care homes. We did a lot of praying on the 2 hour drive downtown. We got their and attended a meeting with the staff of the home, they determined that Josh and I were ready to bring Malachi home as soon as he was released from the hospital. That day we also got trained on how to use his apneia monitor and CPR. We were finishing things up at the house and then we decided to go visit Malachi in the hospital. We had just pulled into the parking garage when we got the phone call. Malachi was getting discharged and we were going to be able to bring him home!!!! We had to go back to the house and finish up going over his paperwork then we could go to the hospital and they would release him directly to us!!!! I can't even describe to you how we felt at that moment. We got back to the hospital around 3. We got to hold Malachi and feed him while we waited for the discharge papers. Those didn't come until 7 that night. At 7:30 we walked out of those hospital doors with our son. He was finally coming home and we were beyond excited. When we got home around 9:30 we fed him, got him in his very own pj's and put him to bed. It was the first time in his life he was kissed before he fell asleep, it was his first time sleeping in an actual home it was the first time he had real parents. It was a glorious day. We didn't sleep that night, we just watched our son sleep. We prayed and gave thanks to God for trusting us to raise this boy, we were in awe of the gift we were just given. November 21, 2008 was the day we welcomed home our son. We will celebrate this day every year by having a family day. Today we are going to hang out, play with our son, enjoy soy ice cream sundaes with chocolate sauce and shower our son with love. God is good.


Malachi and I waiting to get discharged from the hospital.


Malachi sleeping in his swing while we got things organized that first night.

Wednesday, November 18, 2009

One year photos

Just thought I would share the website of our amazing and talented photographer. She has just recently posted a blog entry about our picture session this past July. We absolutely LOVE how our pictures turned out and are looking forward to using her again in the future. We did not know each other before we met at a wedding and she told me she "was going to take Malachi's picture" I of course agreed. I LOVE her artistic style which includes color, crops and extreme close ups. She was able to capture Malachi's personality and was never on a quest to get him to smile, which makes these picture my most favorite. Go look and tell me what you think!

http://indigophotography.us/blog/

Tuesday, November 17, 2009

nothing new

There is absolutely nothing new going on in our lives right now. For the first time in a year, things are actually quiet boring, and I LOVE it. Malachi has been doing wonderful and managing to stay healthy despite multiple people in our church having swine flu. I'm knocking on wood that it continues to stay out of our house! Just a quick update...

Thursday, November 12, 2009

A year ago.

A year ago tomorrow Josh and I finished our home study. It was our last step that needed to be completed, on our end, to bring Malachi home. It was a day that we had longed for and wished would have come quicker. I remember waiting for our case worker to contact us to schedule our final home visit, I remember word for word what a friend told me "a year from now this will all be done, and the wait that you are experiencing right now will be a grain of sand on the beach..." I didn't know then just how right she was. All the anticipation, wonder if Malachi was ever going to get well enough to come home, the questions, all of it means nothing now. Exactly 8 days after the finalization of our home study Malachi came home (I will write more on that in exactly 8 days). I remember cleaning and getting the house just so, we were so relieved when it was over and our case worker told us we passed and that she was going to fax our information off. Oh what a marvelous day it was. The house was clean and Malachi's room was all ready to welcome him home. We were ready. Ready to be parents, ready to tackle this crazy life, ready to be obedient to God and fully commit to Malachi. Oh what a glorious day it was!

Wednesday, November 11, 2009

Update on ST

Sooo...I am STILL fighting with EI to get Malachi's speech increased. Today a new ST came to evaluate Malachi. She was nice, but Im still leary of her, she is VERY passive and offered little help. I am trying to remain hopeful as the was the first time she has ever met us. After her evaluation she was beging to tell me where he was at and she stopped, almost like she didn't want to continue. I blurted out "What ever age you evaluated him at, just tell me, your not going to hurt my feelings. I KNOW Malachi is behind, my number one concern is that we are doing everything possible so that Malachi can advance." I don't think she knew what to say, but I am not in this to make friends, I could care less if they like me. After we talked some more I asked her if she thought he needed to be seen more than once a month....and she said YES!!!!! Finally we are getting somewhere! We will meed for his annual IFSP on December 7, Im mentally preparing for it as I have LOTS to say!

Monday, November 9, 2009

Getting Close

I can hardly believe that it's already November. It has been unseasonably warm here in the Midwest and we have been loving it. Most of the leaves are off the tress and the grass is brown. Fall is almost over and soon we will be bundling up in our hats, gloves and coats, ugh. Glistening snow will soon cover the brown grass and naked branches. Our fire place will warm the house and the doges will relax and soak up the heat. I enjoy winter when am bundled up in our house watching the snow fall or spending an afternoon making a snowman. Winter is just around the corner and I am having mixed emotions about it. I guess its my love/hate relationship with it. Has is snowed yet in your town? Do you enjoy winter?

Wednesday, November 4, 2009

ABR

Anyone out there ever experience a ABR? Malachi is going to a ENT and audiologist in another state because we have never gotten an accurate hearing test on him. They want to do an ABR (sedated hearing test) im not worried about it, just wondering how long it takes. Please share your experiences with me!

Growing like a weed

Malachi is growing. Fast. And to be honest, I like it. He has never been a big fan of baby food, he would pitch a fit and not eat it. All he wanted was his soy milk. A few days ago he took a nap from 9:30 in the morning till 1 in the afternoon. I was worried he was sick. Much to my excitement the very next day he ate 2 entire jars of stage to baby food and washed it all down with some mike. And he hasn't stopped since! 12 month onesies are now to small. I put him in a pair of overalls last week and they were way to big, I needed to roll the pan cuff, this week they are floods! This all from the little boy who wore 0-3 months till he was 7 months old! He is growing like a weed, finally!

Sunday, November 1, 2009

Fashion Show



Today we had the 2nd annual Gigi's Playhouse Fashion Show. Malachi got all dressed up and practiced blowing kisses early this morning. When we got to the Bull Vally Golf Club we got to visit with friends and enter some wonderful raffles. It was so fun to watch all the kids dressed up and running around. 
This years theme was "Getting Down with Fashion." The kids got to pick out clothes from Gymboree, Justice and Maurices.
 
Malachi was the very last person to go. Hi blew a few kisses and the signed "all done." He looked adorable in his outfit, I was one proud mama!
 
All the models got a rose. He LOVED being the center of attention.


After the fashion show, we all went downstairs to enjoy a delicious brunch. These were the cute centerpieces that some of the old kids got to help paint.


One last family picture, i think this may be our Christmas cards this year! We had a wonderful time and can't wait till next year. Thank you to those who can out to show their support of Malachi and all the other kids. It was wonderful to see such support, I had to fight back tears as I watched the video when we got home. I am beyond thankful for this journey God has taken us down and the BEAUTIFUL people we have gotten to meet along the way. We can't wait for next year!!

Friday, October 30, 2009

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!


Wednesday, October 28, 2009

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

Tuesday, October 27, 2009

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!

Thursday, October 22, 2009


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!

Wednesday, October 21, 2009

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!!

Tuesday, October 20, 2009

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.

Sunday, October 18, 2009

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!

Thursday, October 15, 2009

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!


Tuesday, October 13, 2009

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!!

Monday, October 12, 2009

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!

Sunday, October 11, 2009

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!!

Wednesday, October 7, 2009

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.

Tuesday, October 6, 2009

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.

Monday, October 5, 2009

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

Sunday, October 4, 2009

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!!

Saturday, October 3, 2009

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

Friday, October 2, 2009

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!!

Thursday, October 1, 2009

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.

Monday, September 28, 2009

Hope


I was reading a blog this afternoon and came across this...


Hope By Barbra Gill


Often others seem to feel a special responsibility to puncture our hopes. They say things like "You know she will never learn to read," or "you need to accept that he doesn't know what is going on around him, " or "He's doing well now, but he will reach a plateau."


They would say we are in denial, that our dreams are "false hopes," from which we must be protected. God forbid anyone should go around entertaining false hopes! But, in a certain sense, what other kind of hope is there?


Hope is the thing that is willing to take a chance on the future. And who is audacious enough to say what the futurewill bring? Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn't' face, then hope has done it's job.


There is a worse thing than false hope. It is no hope at all.


I know I have felt discouraged because someone close to us has questioned our decision to adopt Malachi and even worse have questioned his possibilities. I remember back to when we told those closest to us that we were thinking about adopting a baby with Down syndrome we were actually told "he will be a mistake and a burden." That hurt more than you will even know, but Josh and I knew that person was wrong. We knew Malachi would be a blessing in our lives and in others close to us. We didn't know what to expect, we didn't know what kind of struggles he would have but we chose to have hope. Hope that no matter what happens he would be loved. Hope that he would crawl, walk and talk one day. Hope that people in our family would accept him for him and not based on his diagnosis of Down syndrome. We have hope that he will play sports and compete in the special Olympics, hope that he will be accepted in school, hope that he will learn to drive, hope that he will attend college and graduate, we have hope he will melt the coldest hearts and that along the way he will teach us all to have a little more hope. I recently heard someone giving a speech to a bunch of high school students about Down syndrome. She said "children with Down syndrome have one extra chromosome and that one extra chromosome is the only difference between those without DS and those with." She then put it into a percentage. Malachi is the same as you and I, only 1% of him is different (the extra chromosome), 99% of him is the same. I have hope that one day people will see Malachi for the 99% rather than the 1%. 




Home is where the heart is!

I am thankful. Thankful that I get to stay home and raise Malachi. Thankful that I am here when he wakes up in the morning and I am able to give him is morning hug, kiss and snuggles. I am thankful that I get to play with him after breakfast and show him new things. I get to see him laugh when we read a silly book. I get to see him repeat the signs I have taught him. I am tankful that I get to put him down for a nap and be there when he wakes up. I am thankful I get to hear all his noises. I am thankful I get to see him struggle through his therapies and also see his face when he finally succeeds. I am thankful I get to challenge him to go farther and help him when he needs it. I LOVE staying home with Malachi and I am so thankful I have a supportive husband who works very hard so that I can. I am thankful he will give up cable, new clothes and other "stuff " so that we can afford it. I am so very thankful that I get to spend my days with Malachi!!

Friday, September 25, 2009

A Mothers intuition

Let me start off this post by saying a mother intuition is ALWAYS best! Okay, now, take a trip back to July with me. More specifically, Malachi's last swallow study. If you recall, the results were not good. It showed that Malachi was aspirating honey thick liquids into his airway/lungs. Ugh. Our GI said "we need to get a g-tube put in right away." She even sent us to speak with the surgery scheduler that very same day. Josh and I were both in shock and decided that it would be bet if we took a day to let the idea of a g-tube digest. We didn't want to make a quick decision. We left the GI that day scared. At the same time all this was going on we were informed that our Speech therapist was leaving. I don't know about where you all live, but in Illinois it is almost impossible to get a speech therapist who will work with kids who have feeding issues. It took a call to our lawyer and the head education guy at our foster care agency to get us on the list (i was told the only way he would get to the top of the wait list was if Malachi had autism...! I know, i was shocked. I believe ANY child with a diagnosed medical complication should be put on the top of the list. Don't even get me started about that!) After about a month of fighting with our therapy provider, we were FINALLY go a speech therapist so to find out she was leaving was heart breaking. We were back to stage one. At that time Malachi was making huge gains with his eating the more we thought about it the more we began to worry about the steps back he would be taking with a g-tube. Especially because we had no speech therapist to work with him and teaching me how to strengthen those muscles. We were torn and didnt know what to do. We spoke with every single one of his Doctors and realized they didn't seem to think the g-tube was necessary this quick, there were other things they could do first. So much to the disappointment of Malachi's GI we decided not to go through with the g-tube. I worried that we had made the wrong decision and that Malachi would get really sick and it would be all my fault.
      Today, we FINALLY got to meet our new speech therapist. She is AMAZING! She told me she wanted to do another swallow study to see where Malachi was since she had not seen any of the precious 3 studies. She got us an appt. in x-ray about an hour later. I was scared poop less. I was thinking "what if he is still aspirating? Are they gonna wanna do the surgery right away? What would feeding time look like now? I wonder which hospital they are going to do it at?" I was being a negative nancy, but deep down I knew we had made the right decision, no matter what the test showed. I got to feed him thin, nectar and honey thick liquids. And he only aspirated once on thin liquid! Woo Hoo! So he is safe to drink nectar thick liquid and does not need a g-tube! I cried like a baby when she told me the good news. She also told me she wanted to do some v-stim on malachi neck muscles and that after 4 treatments his swallow muscles should be strong enough to swallow thin liquids with no aspirating!!!! Thrilled, I am!
   I'm ending this post saying  "a mothers intuition is always best!"

Wednesday, September 23, 2009

".....the only thing wrong with him?"

     Ugh. There is nothing I absolutely loathe more that ignorance, wait let me think, no NOTHING! In the past 24 hours I have been educating "the world" (actually only 3 people, but who is counting?) on what and what not to say regarding people with Down syndrome. So if you are reading this and you are close to us in anyway, please, please, PLEASE listen carefully. Malachi was born with an extra 21st chromosome thus the cause of his diagnosis, Trisomy 21. He WILL do everything you or I can do, he will just accomplish it in his own time. His face may look a little different, his speech may be delayed and he may take a little longer to understand things, but he is perfect in every way. He was made exactly the way God wanted him to be, and God never makes mistakes. Please never refer to something being wrong with Malachi, because nothing is. Truth be told, if you look at him and all you see is Down syndrome, then something is wrong with you. He is so much more than Trisomy 21. He is a lovable, funny and stubborn 1 year old, much like your children are or were. When talking about his diagnosis, please speak in people first language. For example, he is not a "downs boy", he is a boy with Down syndrome. He is a child before he is anything else. Now that you have been educated, you can no longer claim ignorance.

     Just had to get that off my chest quickly. Thanks for baring with me. Now for an update on Ryan. It doesn't look like things are working out in our favor. We will continue to pray for questions to be answered and that something will work out. We are praying for you little man, stay strong while God reveals his ultimate plan for you.

Broken heart

 

I recently came accross a blog entry containing this picture...



This is sweet little Ryan. After his mom gave birth to him they found out that he has Down syndrome. She, along with her husband and other child decided to put him up for adoption. Ryan is currently 2 months old and lives in NY. Please pray for this sweet little boy, he needs a family asap. Josh and I have e-mailed the agency his is currently with, as we are trying to see if this sweet baby is meant to be here with us. Unfortunately,  the next step is to get them a copy of our home study. Our agency wants to charge us $1500 to do a new home study. Unfortunately, we do not have that kind of money (my husband is a teacher and i stay home, money isnt exactly flowing in) . So please pray that doors be opened (to us or another family) we want Ryan to have his forever family!!!!

Sunday, September 20, 2009

Fruit

Now that summer time is coming to an end, my craving watermelon and pineapples are gone. No longer do I wish to snack on juicy red watermelon or sweet, fresh pineapples. My taste for fruit changes with the seasons and now that the leaves are starting to change color I am craving these succulent, seedy, sweet little balls of goodness...


Mmmmm.... Raspberries! We are fortunate enough to live within 5 mins of the most amazing apple orchard in all of Northern Illinois!! Not only does our apple orchard have acres upon acres of apples, a beautiful barn housing the most delicious dips, sauces and fudge you ever did taste, but they also have fields of raspberry bushes ready for picking!

 

There is nothing more fun that heading out to the field with my family and picking a pint of fresh raspberries and snacking on the ones that don't quit make it to the container. And the fact the the sun was shining made our adventure even better!

Friday, September 18, 2009

Thrilled, excited, over-joyed....

I just had to share some amazing news with you all. Malachi has his ASD/VSD and mirtial valve surgery back at the end of January. A few weeks after the repair the Cardiologist told us that there was still Atrio. leaking and tricuspid leakage. We were worried that another surgery would be required to seal up the last little holes. The Cardiologist had us coming in monthly for office visits and echo's to check the leakage. A few months ago we got the news that the holes were not affecting Malachi's pressures and that surgery would not be needed. We were thrilled, but still a little nervous about those little holes. This morning we made our way to our monthly appointment but the outcome was much different than expected. Dr. F held Malachi and listened to his heart. He looked up at me and said. The holes have closed!!!!! 100% gone, no more leaky heart! I was so excited and a wave of extreme joy washed over me. I want to cry. And then he got up, gave Malachi a high five and said "we will see you in 6 months!!!" Six months, I can hardly believe it! This is the first time since Malachi has been born that he doesn't have to see the cardiologist every month. I can't even begin to tell you how happy I am. After the appt. Malachi and I went to the park to celebrate!! I can't wait to share the amazing news with his surgery team on sunday!! God is amazing and I am in awe of His mercy!! Praise God for being the ultimate healer!

Wednesday, September 16, 2009

The long awaited picnic!

I was trying to wait until Friday to write this post, but I just cant wait a second longer. This Sunday we will be driving 2 hours to attend a picnic. This is not just any picnic but a picnic put on by the heart surgeons at Rush where Malachi had his heart surgery. We can not wait to see Dr. P (the AMAZING man who repaired Malachi's heart in only 3 hours when it was supposed to take between 5-7), Dr. H who cardio-verted Malachi's heart 4 times that day we almost lost him and all of our wonderful nurses (deb, jen, colleen, erica are just a few). We can't wait to show them how far Malachi has come and to thank them for fixing Malachi's heart giving him a chance to live life to the fullest. How do we really thank them? There are no words that will do justice and no gifts worthy enough. They took my 8lb baby boy into that operating room and closed his ASD/VSD and created an entire mitrial valve...simply amazing!
I absolutely can't wait to see them all and give them a big hug!! I think the best gift from us will be an embrace with Malachi, the child who would not be here today if it were not for them!!! I cant wait!!!

Monday, September 14, 2009

Is he walking yet?

I'm warning you now, this is going to be a venting post!! I've lost my cool and I NEED, no, I MUST, vent! And you my friends get to put up with me...venting! Here it goes....

Question:  why is it that when ever someone finds out that a child is 1 or older they always ask "is he/she walking yet?" As if that is some sort of clue as to how far, or not far behind they are. This NEVER used to frustrate me until I had a child, was is in fact over a year old and NOT walking. Now this question makes me blood boil! Perhaps it's not the question itself, but the reaction to the answer. We were somewhere and I over heard someone asking another person (who is VERY close to us) how old Malachi was and if he was walking. The response was "no, but he's crawling." (Which in our eyes is HUGE!!) The person who asked the question just said "oh." I overheard this and had to walk away. Hence the reason for this post. Why do we put so much importance on milestones? Is it really important that a child holds their head up at 3 months and rolls over at 4? (yes is get that we need to evaluate milestones to see if therapy is needed, I get it) Isn't it was more important that the child is happy, well adjusted and has a good personality? Or that they are trying their hardest to accomplish crawling? Does it really matter if they are walking by 1 or is it more important that they have the determination to keep trying? I will be brave enough to say that Malachi is  still drinking form a bottle, he isn't interested in baby food, he has a severe gag reflex's that prohibits him from feeding himself, he can't put things into containers and he cant walk. But Malachi can smile, laugh and hug. I will choose to measure his success by his personality, his determination and his ability to put a smile on anyones face. Malachi is doing something more important  than walking, he is changing the world one smile at a time And that is so much more important.

Thursday, September 10, 2009

My little reader

Lately Malachi has been obsessed with books. He will sit with me and read for hours and then throw a fit when i say books are all done. To encourage his to look at them on his own (I cant read to him all day!) we've gotten a few to keep with all his toys. These 3 books have become his FAVORITE! They have huge, simple and colorful pictures and at the end they play a sound and have some lights. The pages are cardboard which allows Malachi to turn the pages himself! I HIGHLY recommend these books and have found them used on Amazon for under $5 each.







Tuesday, September 8, 2009

Labor Day

Josh, Malachi and I had a CRAZY busy weekend. Sat. we moved my brother into a new apt. in Chicago and that night we had a BBQ. Sunday we headed out to visit Joshes grandma and great aunts. We had a wonderful visit and came home late sunday night. On monday we took Malachi to the apple orchard where he had his first pony ride. We were busy but we had a blast!

Here is a link t malachi's crawling video. He is getting better and better. We are so proud!
Malachi Crawling

Monday, September 7, 2009

Officially, Officially

Malachi is officially crawling on his hands and knees! He started a few days ago, but couldn't get far. He went across the living room today which is pretty big. I cried. Yep I am a loser, but we have been working on this for soooo long and just the other day his PT said that she thought he was gonna skip right over crawling and move to walking. Boy was she wrong!

Just a quick post tonight before bed. I will post about our laborfull weekend tomorrow!!

Thursday, September 3, 2009

The case of the no no's

Let me start off this post by stating that hell has officially frozen over!! Wondering why? Let me tell you that we residents of Illinois have experienced a straight 4 days of sunshine!! Tell me more, you say...Alright I will share with you the best news yet...It looks like we will have 4 more days of sun!!! Hell has frozen over and now pigs are flying!!!
Okay no to the entire reason of this post. My wonderful little pistol, I mean sweetheart has learned the meaning of no! Lord help me now. He may not be able to verbally say it but he sure can shake his head.All day yesterday I was asking him yes or no questions. Do you want a diaper change? No. Do you want to read a book? No. How about a bath? No. As the, mom knowing what best for my child, I proceeded to do all these things regardless and them had to deal with the full on temper tantrum for making him do something he didn't want to. I asked him later that night if he wanted a bottle he replied with a vigorous head shake no. I said to my husband, he doesn't know what he talking about and proceeded to make him a bottle. Imagine how surprised I was when he wanted nothing to do with the bottle. How can there be so much attitude in this cute little face?
I think I can officially say Malachi knows what no means. And I can officially say we are in trouble, I can only imagine what he will be like as a hormonal teenager. I will start taking donations of alcohol and cigarettes now, because im gonna need them! (But i dont drink, often, and I def. dont smoke, im just kidding people!!)
One more quick thing before I leave you all to enjoy you Thursday. We are getting a team together to walk in the Buddy Walk. I will be putting a link to our team page on the right side. Please consider donating to this wonderful cause. All donations will go to helping our loved ones with a little something extra.Please, Please PLEASE, I'm begging you (and i normally don't beg) make a donation!!
Who can say no to this??

Wednesday, September 2, 2009

An unexpected adventure

When Josh and I began the process to become foster parents we never expected the adventure we would wind up on. This journey through adoption has been an unexpected adventure but one I wouldn't change for anything. This past weekend we took another adventure out to the wilderness of Wisconsin for our first family camping trip. I was expecting sunny skies and semi cool nights. What we got was completely opposite. The first night we experienced a thunderstorm which brought down part of our tent. We hide in the comfort of my brother in laws camper while Josh went to investigate the damage. What he found was puddles of water and wet blankets. Defiantly unexpected. We left Malachi with my sister in law while we ran to target to get towels, new blankets and some clothing for me since my bag got wet. We dried things to the best of our ability and went to bed. (Malachi's things stayed nice and dry, they were in his pack and play 4 inches of the ground.) The next morning we awoke to cloudy skies and VERY cold temps. It proceeded to sprinkle/mist the rest of the day. Ugh. When we left on sunday the skies were bright and the sun was shining. All in all our unexpected camping adventure turned out great. We had fun even though it would have been very easy not to. We are looking forward to our next camping adventure with a new tent.