Sunday, May 31, 2009

Teething

Ugh. Thats all I can say. I think Malachi is teething. He was running a fever last night so we gave him some Motrin and put him in bed. He slept all night and got up early this morning. He was fussy so Josh got him and put him in bed with us. But when we got up, man he was a beast!!! We took his temp again and he had a low fever. He was screeming and crying and nothing was helping. We gave him some more motrin, we will see how he is when that wares off. Got any tricks or advice, I am desperate!

Wednesday, May 27, 2009

another evaluation

Malachi has another evaluation today, this one was for vision therapy. Malachi's eyes "flutter" a lot and since he is so little and already needs glasses he qualifies for vision therapy! Jenny will be coming once a month to give me new ideas to strengthen his eyes. She was very impressed with how well he is reaching for things and tracking. She said most kids who have vision impairments just kind of sit there, not Malachi, he will reach for everything and anything. I am VERY excited about VT Jenny had great ideas and I think it will improve Malachi's physical development. I have never heard of VT before and I wonder if its fairly new? Either way I am thankful for all the AMAZING therapists we have. Tomorrow we have OT and a home visit from our licensing worker!

Tonight we are going to a orchastra concert at Joshes school. I wonder how Malachi will do??

Tuesday, May 26, 2009

busy, busy, busy


I just thought this was the CUTEST picture of Malachi. Anyway, we had a very fun filled weekend. Friday night we had pizza and a bonfire at the neighbors, sat. was the white sox game, sunday was church and a birthday party (another dinner and bon fire at the neighbors) and monday we went to see my dad race his sports car and a dinner out with out neighbors! Phew, Josh is back to work today and Malachi and I are looking forward to a relaxing day at home. We might even stay in jammies all day!
Before the white sox game we stopped by Rush (the hospital Malachi has hid heart surgery at and the place we called home for 3 weeks after). When we walked in on the bridge so many feelings were comming back. The smell, the people, the reception desk where we bought parking tickets and ABP where we are so many sandwhiches, soups and salads. Then we started the long treck to the elevators, passing the windows we looked out so many times. We got in the elevators and went up the the 5th floor and when the doors opened it felt like we were going home. The docters and nurses in the 5th floor PICU were our family for those 3 weeks. The took care of Malchi's every need (mine too). They nurtured him through good days and the day we thought we were going to lose him. How do you say thank you to them? What do you say after 5 months? We walked in and were greated by Kathy (she is a no nonsense nurse who probablly knew more than most of the docters). She was thrilled to see Malachi and how big he was. After a quick visit with her, we walked back to the cardio rooms (4 rooms at the back of the picu that are strictly post-op cardio patients). We saw one of the resident docs we had (forgot her name) and Donna was there too! We absolutely LOVED Donna. She was the mom nurse who did so much more than just give meds and take vitals she calmed my nerves and gave hugs to comfort me. She would hold Malachi if I had to run to the bathroom and rub his head if he was squwirming. Donna washed her hands and came right out and heald Malachi. We both got a few tears in our eyes. As we were about to leave Dr. P (malachi's heart surgon) came walking up. He was thrilled to see him and how big he was. He was going to check on a patient so it was a quick visit but Josh and I were able to say thank you (again). Overall it was a wonderful visit to a few of the nurses who mean so much to us!! We are forever greatful to the 5th floor picu cardio nurses and doc's.

Friday, May 22, 2009

pictures

The last get together before the J's big move to Cali. We will miss you!!


Look at my baby!

" Not so good mommy"


Trying ice cream for the first time.
We went to a surprise going away part for the J's this week. It was a bitter sweet time. They are packing up and moving to cali. We will miss them but trust they are following God's plan. They offically move on tuesday, so we will see them at church one more time before they go. We can't wait to go and visit!!!!

Tuesday, May 19, 2009

Take 2

Im not sure why my past post didn't post but I will try again. My last post was about Malachi and him getting his first tooth!! Woo Hoo. I was starting to get a little worried because he wasn't getting teeth! Do kids with Down syndrome get teeth later? I just dont know. But one is comming, I can see it but can't feel it yet!

Malachi has been working on tall kneeling. I got a quick shot of him working with daddy.




He is getting really good at it! We just have to keep our hands on his lets to keep his knees together. He tries to cheat and separate them! He is getting stronger and we are so proud!



I LOVE this picture. He was playing with a piano. I can just see the concentration in his eyes!

haha, I just laugh. I can see him doing this when he turns 16. "Mom I REALLY,REALLY, REALLY want the red Mustang Convertable.....PLEASE" So cute!

Thursday, May 14, 2009

I can do it, I WILL do it

As I was about to start a post, on a completely different topic, I was sitting on the chair watching Malachi rolling on the floor. He is so cute and has master rolling over to his left. However, I have NEVER seen him roll to his right. Until today that is. I decided to put a huge laundry basket on his left hand side so he couldn't roll that direction and I knew he wouldn't just lay on his back. It was a success. The basket forced him to roll the way he never does! I watched him struggling to get over. He was grunting and using every muscle possible to get on his tummy. He let out a few frustration cries and I wanted so badly to go help him. To give him that last little push he needed but instead I watched and hoped. I tensed up as he was making another attempt, he just couldn't do it. He cried a little and took a short rest. It was so unbelievable hard to just watch. After about 5 mins he was ready to try again, this time, it was a success. He FINALLY managed to roll to his right and make it onto his tummy. He could finally reach his beloved piano and his reward was hearing the music after he pushed the button. My little man finally did it!

Nothing brings sweeter joy than seeing the successes of our children no matter how small they are! As I type this my eyes are filling up with tears. I know DS will cause things to be difficult for Malachi and that he will struggle a lot along the way but today reminded me that no matter what the obstacle, Malachi can do it and he will do it, just in his own time (and, yes, sometimes in his own way) and he is not going to always need me there to give him that final push.

Wednesday, May 13, 2009

elusive smile and a CONTEST!!



SO....I have been on the quest to capture a smile of my son! He seems to know the second I put the camera up to take a picture he stops smileing! STINKER! Why do I want to capture the smile? Well, its his big toothless grin that keeps me going through the day. Its his big, brown, almond shaped eyes that cheer me up when Im feeling discouraged. For months now I have been trying to get that elusive smile on film (well memory card) I have hundreds of missed momments and few victories! I will share 1 of each with you today!


I have never done a "contest" before so I thought now Is the perfect time! Here is what you have to do, Think of 1 caption for the following photo and leave it in a message. If you want to be entered twice, post a link back here! Wanna know what you can win?? A pair (you pick) of super sexy baby legs!!! (http://www.babylegs.net/)


I will let you know the winner on friday!! Happy posting!

Monday, May 11, 2009

Weekend Re-cap



This weekend flew by but dont they all? I thought I would re-cap the weekend...WITH PICTURES!!




Friday night we went to dinner with the Bosco's. It was fun and both the boys cooperated! After dinner we went swimming. It was the first time Malachi has been in a pool. He LOVED it. He was a little confused by the ripples and kept reaching for them. It melted my heart! We can't wait for the nice weather so we can open our pool and spend hours of fun in our own backyard!! Come on summer!!




Sat. we had a wedding and Peewee went to Grandma and Grandpa W's house! We had a great time at the wedding. This is a picture of Malachi playing before we left.




Sunday was my first Mothers Day ever and boy was it amazing. My boys did a WONDERFUL job making me feel loved! I got a BEAUTIFUL necklace with a Ruby in it (Malachi's birthstone), tulips, Godiva Chocolate,a starbucks gift card AND a gift card for a massage at a spa!! I am so spoiled! We went to breakfast with my parents and my brother. Later in the afternoon Joshes entire family came over. We had subs, soup and salad for lunch and spent the rest of the time visiting! It was a nice afternoon. This is a picture of Malachi showing off his super human strength!


And tonight we are shopping for plants and flowers. We totally look like the white trash of the neighborhood with dead flowers still in the planters and flower beds. We have weeds like crazy in the lawn and pool stuff still all over our backyard. Not to mention the exploded 2-liters of pop still on the deck! Time for some spring cleaning!!

Sunday, May 10, 2009

To all the Moms

Happy Mothers Day!!!

We hope you are all being honored by your husband and children today! Possibly you got to sleep in and have breakfast in bed or got a special gift mad by tha hands of the kiddos! Anyway you celebrate today, know that you are amazing and the best mommies ever!!! Have a WONDERFUL day!!!

Friday, May 8, 2009

1st ever

This Sunday will be my first Mothers Day ever! I am so excited to finally be able to celbrate this day as a mother. This weekend is going to be busy! Tonight we are going dinner with our best friends. They rented a hotel for the weekend so after dinner we are heading back to the hotel to swim with the babies! It will be Malachis first time in a pool. Tomorrow we have our Down syndrome support group and then a wedding!! I LOVE weddings and can't wait to see my good friend FINALLY getting married!! Sunday morning we are getting breakfast with my mom and dad and then having Joshes entire family over for a mothers day lunch!

Josh and peewee went shopping last night and cam home with a HUGE boque of tulips for me!! AND Godiva Chocolate! Yummy! They made a few stops so I am expecting there to be more!! Did I tell you I LOVE Mothers day?

What are all you doing out there? I hope that you mothers are honored for all the hard work you do every day!!

Wednesday, May 6, 2009

another month

My sweet Malachi is 10 months old today! I can't believe it! He has been through so much in his short little life, more than anyone should ever have to go through. Here is a recap of his last 10 months.
*July 6, 2009. Malachi was born at a chicago hospital. His mom was unable to care for him due to a cocaine addiction and the state took custody 3 days after he was born. That was the last day he ever say his mom. He was the 9th child. His first month he struggled. Born at a small 3lbs 13 oz. he had a lot of growing to do. His mom had no (and I mean nothing, notta, zilch) prenatal care. She never once saw a doctor or took a vitamin. She lived on the streets and did drugs thus being said he was 2 month early and his lungs were not fully developed. July is when God began to work in our hearts and when our friendship with the Smiths ( not their real name, keeping their names private) began.

*Aug. Malachi was transferred to a different hospital. He was still in the Nicu and on an oxygen hood. The docters didn't think he was going to make it. Mom still hadn't been in to visit and had made no attempt to contact Malach's case worker. Malachi also began suffering from congestive heart failure. His outlook was dim. But out God is and was bigger than any illness and he had other plans for Malachi. Malachi was surrounded by Gods unfailing love and even though he had no visitors, no one to hold him or snuggle with him, No one to give his sweet kisses on his cheek and tell him that everything was going to be okay, God was their holding him when he was scared or alone. During this time Josh and I had started Foster Parenting classes. I had begum working with adults with disabilities, a job I had NO experience in. Little did we know God was working in our lives big time!

*September. Malachi is still in the hospital. The doctors still didnt think he was going to make it. They were working on him gaining weight. They were also trying to get him stable enough to be transferred to a childrens home. Malachi had been a fighter since day one and this month was no different. This is the month that Josh and I first heard about sweet little Malachi. Our friends, the smiths, had gotten an e-mail about Malachi. His case working has sent and e-mail out to all the down syndrome support groups in Illinois looking for a family who would be interested in fostering to adopt. The smiths were interested and they asked us what we knew about foster parenting. We began to pray for them.

*October. Malachi was getting more stable. The smiths were getting medical updates about Malachi and continuing to pray about their decision. Soon they realized that God did not want them to be Malachi's parents. That is when they approached us. God had been pointing them to us. WHAT? Josh and I were overwhelmed. Could we do this? Be parents to a child with special needs? we had so many questions. We prayed hard that night and the nights to follow. Its amazing the clarity God had given us in such a short time. We knew that we were being called to do something big! We knew we had to follow God. We began to pray daily and persue this sweet little boy. Soon he was released into the group home, and we got to go visit! We fell in love that october day!! God answered us that day and we knew he was ours.

*November. Malachi was gaining weight. Josh and I went to visit him every weekend as we waited to get our license finished. We couldn't wait for the day we would get to bring him home. Malachi was all set to come home when he was hospitalized with a UTI. Josh and I went to visit him in the hospital. It was the first time I felt the bond. He looked at me and I told him it was going to be alright. That was my first mom moment, one I will NEVER forget. November 21st. we had a big meeting with all of Malachi's care givers. This was the day we were supposed to being him home, unfortunately it didn't look like that was going to happen, he was still in the hospital. We went to the meetings and did our CPR training and headed up to the hospital to visit Peewee. We had pulled into the parking lot when Josh got a phone call. Malachi was going to be released!!!! He got released right from the hospital to us. It was the most amazing day of my life. I was a mom, Josh was a dad and we were finally bringing home our son. November 21st will always be the day we became a forever family.

*December was filled with excitement. Malachi was doing great and we were adjusting to life with a baby. He had lots of doctors visits this month. We got his heart surgery scheduled for Jan 30th. Malachi was enjoying meeting his aunts, uncles, cousins, grandmas, grandpas and every one else. He quickly became the start at church and everyone fell in love. How could you not?

*January was the big surgery. All moth we prepared. Cardio caths, cardio appointments, excessive hand washing and packing for our stay in Chicago. Jan 30th came all to quick. Malachi went into surgery and was done in 3 hours. He needed a complete AV canal and a mitrial cleft repair. The surgery was supposed to take 5 to 8 hours, again God was working in the operating room. They took him off the vent right away and we began our long recovery.

*February. Malachi was recovering great until they took his chest tube out. That day he went into JET. His heart rate was above 220 and his heart was in a junctional rhythm. There were 5 docs in his room working on him. They tried every drug imaginable to get his heart rate down. Nothing was working. They called up a pharmacist to help. She gave them another med that worked with adults they tried it and it worked! They also had to cardio vert him 4 times to get him back into a normal rhythm. It didnt work and he remained in JET for 4 days. We got to go home after about 9 days only to turn around and come back the next day. Malachi was in heart failure. Another 7 days in the hospital and we got to go home.ONly to turn around and go back, heart failure again. After total weeks in the hospital we were done for good. Malachi was finally back to his new normal. Praise God for answered prayers and for holding us through that time.

March. We had a great month. No big issues. Malachi started getting physically stronger. March was a boring month. Oh wait, he was hospitalized a week for the Rota Virus. Nasty, Nasty, I hope you NEVER have to experience it! He lost 3 lbs in 24 hours!

April. Another great month. Malachi started rolling over again. He was continuing to melt the coldest hearts! He was hospitalized for 8 days for RSV. That was the LONGEST week of my life! Malachi also started therapy!! Woo hoo, finally!

May. What will may hold? For starters it held our 1st buddy walk. We raised over $1200 for NDSS! and had a blast! Malachi is making great progress in OT and PT. They are amazed at how quickly he is progressing. Who knows what else is going to happen. We will just continue to Love our little man and pray that Josh and I are doing Gods will for our life! Malachi is such an amazing little man. I am sure he will do great things! We love you peewee!!

PS. Malachi is now 16lbs!!! A long way from 3lbs!!

Suction!

When Peewee was hospitalized for RSV we got sent home with a suction machine. I had been begging for one of these since his heart surgery. He always seems to have junk in his nose and the bulb doesn't do anything (yes I used saline too). Well I LOVE that little (well its really big) electric sucker! I think all moms need one! It has been wondrous for this little cold he has right now, if we didn't have it he would most likely be in the hospital. He still has nasty boogies (im sure you all wanted to know) and a cough but no fever. He has been sleeping more than normal but sleep is needed to fight illness, right? I did have to give him a breathing treatment this afternoon (I threw in some Pulmacourt, we had left over from RSV) and that helped his wheezing.

ahhh, gotta go, it just started pouring!!! I have to shut the windows!

Tuesday, May 5, 2009

Not again

I woke up this moring to a chatty baby boy. I listened to him call out to his dad "dadadadadada" for a few mins before I went in. When I peeked over his crib I noticed a TON of green/yellowish boogers all over his face. Ughhh. I think we have a sick kiddo again! I cleaned him up and toop his temp. He didn't have one. He seems to be acting normally, just a little more tired than usual. I am trying to decide weather or not to call the doc. Every time we go in there she puts us in the hospital hence the reason why I am leary. No fever, acting normal, I think I will wait! Hes currently jumping like crazy in his jumper! Plese praying that this is nothing more than green/yellow boogers and that it doesn't end up with a hospital visit!

Monday, May 4, 2009

More pictures

Talking on Uncle Mark's Blackberry!


Malachi was passed out for the walk.

Group Shot (there were a few people who couldn't show up...slackers!) The other
little boy in the yellow shirt is Malachi's best friend!



My first ever Not me Monday!

MckMamma is back with her Not me Monday posts!! Check out her blog and read the things she did not do!!

So you wanna know what life in our house is really like? Read the following post of things I absolutely did not do, no way no how , did thest things really happen.









A few months ago I did not post this picture. This is not the laundry that had been lying on the laundry room floor for weeks. I definitely did not walk downstairs in my pjs and change into a selection of clothing from this pile, not me, never! I did not say that this was never going to happen again. Nope.

And today I did not walk downstairs to find the same heap of clothing in my laundry room. Not me, I definitely learned my lesson last time. I also didn't shut the laundry room door and pretend I didn't know what was behind the door. Not me!!

I didn't put Malachi to bed the other night in dirty cloths. Nope. I also didn't keep him in those dirty clothes for therapy the next morning. Who would do such a thing? Not me! When the therapist made a comment about how he must have been a messy eater because his clothing was dirty, I most defiantly didn't blame my husband. That would be mean, and I would NEVER do that!

I also didn't put on a bra that was to small because I had no clean ones. And I would never think about putting a sports bra over the bra that was to small to keep the tissue that was busting out of bra number 1 in. NEVER, not me!

Saturday, May 2, 2009

Re-cap

The buddy walk today was good! We had a WONDERFUL turn out, the largest group there, but thats not saying much because the turn out was very poor. However, our group had fun and we were able to raise over $1100 for DS! Way to go team! We are looking forward to sporting our "Malachi's Marching Mohawks" again in October! It was a perfect day! I even got some sun (We were only outside for 20mins). I have pictures and I will post them tomorrow with our Cubs game pictures! Have a wonderful evening and give all the little (and big too) kiddos a big snuggle!!

Friday, May 1, 2009

Ready, set...



Its the night before our first ever buddy walk! Josh and I are busy getting the finishing details together. All the shirts made it here right on time. We also bought everone a water bottle. Its going to be a wonderful day of celebrating Malachi and people with down syndrome in chicagoland! We really can't wait. Here are 2 pictures of our team shirts.