Pictures!!

My little boy full of smiles!

Daddy and Malachi with their best friends Will and Bryson.

More Smiles.

Go Cubs Go!!

And the best picture of them all! Malachi with his AWESOME new blankie!! Check out this website http://jaxsonsblankiesforbabes.blogspot.com/. Thanks guys for the amazing blankie! Malachi loves it!!

Spring Break!

Where have I been this past week? All over the place! Josh had this week off for spring break and we spent some much needed time together as a family! We did a lot and now we are home getting ready for things to be back to normal next week! I've got lots of pictures to share with all of you so keep looking for them! Have a WONDERFUL weekend and we hope your not getting snow like us!!

Spring is in the air!!

The weather here in Illinois has been WONDERFUL that past 2 days! We have gotten out on a few walks and really enjoyed getting fresh air! Malachi was born in July and spent the first 4 months of his life in the NICU. He has had very little experience with the elements. Our walk the other day was probably the first time he felt the wind blow across his face and the sun in his eyes! His facial expressions were to much and made us laugh the entire time!! We are so looking forward to this summer and spending time outside and in the pool!

Malachi was in a GREAT mood this weekend! He was all smiles (and a few giggles). We know he is feeling better, now lets hope and pray that we can stay cootie free for a LONG time.

Josh is on spring break this week so we have lots of stuff planned including a day trip to see Joshes grandma (peewee's great-grandma) Nana! She has not seen peewee since before the surgery, boy will she be surprised to see how big he has gotten!! We also have dinner planned with a friend of mine from high school and another friend of ours is turning the big 3-0! Depending on the weather we might try to get a trip to the zoo in there too! No spring break vacation this year but hopefully next year we will be on a cruise to a Caribbean island!! Until then, I will picture sandy beaches, cabanas, the scent of tanning oil and fruity drinks with little umbrellas in them!

Would I? If I could?

I have been reading blogs out there recently who have been discussing the question "Would I take Down syndrome away from Malachi if I could?" Reading other's answers has had me thinking about how I would answer. Would I? If I could?

My answer? No way! Malachi was born with Down syndrome because that is the way GOD wanted him! Every cell in his little body was created for a purpose and who am I to criticize God's design? I LOVE every single thing about Malachi! I love the way he snorts when he breaths because his adnoids and tonsils are to big. I love his stubby fingers that have trouble holding on to toys. I love the huge gap between his 1st and 2nd toe! I love his little ears. I love that smile he gives me when he holds his head up. I love that Malachi has down syndrome because Ds is the cause of so many things I love! Not for 1 second would I think about taking Ds away from Malachi!

When people ask how old he is and then question why he is so small I get excited, Its another person I can share his amazing story of strength with! When people stare at Malachi because he looks different I tickle him so he flashes that big smile their way! I take every negitive word, thought or look and turn it into a positive. Malachi is everything but different! I don't get upset at the long list of things he may never do because hes got a long list of things that other children will never do! His possibilities are endless and I will NEVER put limitations on him! If he finds the love of his life and wants to get married, I am all for it! They can live with us or own their own if they want. If Malachi wants to go to college, I will help him pack. If he wants to work at McDonalds, then he wil be the best Damn employee they will ever see! If he never talks? Well his hugs and kisses will be communication enough! Josh and I will support him in anything he does or doesnt do! He has the world at his finger tips, its my job to engourage and support him through it all!

I love Malachi and his Down syndrome!!

OT Evaluation

Today Malachi had his OT evaluation. It went well and the therapist was able to give me a few things to work on while we wait for therapies to start. Malachi has low muscle tone (oh really? I had no clue, haha) and poor upper body strength. She seemed pleased with his lower body strength. His adjusted age is 6 months and he was evaluated at about 3 months. Thats 50% behind. We can work with that, I believe a lot of it has to do with getting set back after his heart surgery. He laid on his back for 6 weeks, no tummy time, no sitting up, nothing. I am confident that with some help he will make progress. I LOVED the lady that evaluated him, I am hoping that she will be his OT therapist. We can't wait to get started!

Tomorrow we are going back to the ENT for a tube follow up and a hearing test! Lets hope he FINALLY passes a test, it not, thats okay too. I am prepared for the answer either way! My love for him will not change and at the end of the day I have to remember that God made him the way he is right now for a reason!

We have our buddy walk team name...Malachi's Mafia! Now its time to start raising money, lots and lots of money! Anyone have any creative ideas to raise money? Let all pt our thinking caps on and get lots of fun ideas, isn't worth it?

Gotta get going, my chocolate chip cookies are beeping at me. I have to go eat one (or 5) while they are still hot! Have a wonderful night and give all your kiddo's a big hug and kiss. We all have so much to be thankful for!

Extra, Extra, read all about it...

I've got LOTS of updates for all of you! Lets start with the exciting ones first...

Tomorrow a OT evaluator is coming over to evaluate Malachi.

Friday a PT evaluator is coming over to evaluate Malachi.

Malachi only pooped 2 times today!

In just 1 short week we get to see our good friends who are Missionaries in Alaska, they will be in town. They have had 2 kids while they have been away and we FINALLY get to meet them! VERY excited!

My hubby is on Spring Break (he is a 6th grade teacher) next week, which means I will have help with Malachi ALL week, he might even let me sleep in!

We are getting a team together for the Chicago Buddy Walk! This will be our first one and we are VERY excited, but we need help thinking of a team name. Any ideas?

That's all of our exciting news, please try and contain your excitement!

(Thanks for bearing with my HORRIBLE spelling, I know there is spell checker, but who has time for that? Not this momma!)

Soy vs. Milk

I've been up o my head in poop lately that I (think) forgot to tell you all about Malachi's new diet! While we were in the hospital the doc did a blood test to see his absorbtion levels. It turns out that he was not absorbing the nutrients in his formula and that he was lactose intolorent! She thinks its because he has had diarreah for so long (this is week number 4) that the tips of the sillia in his intestant have broken off. The tips are what absorb the nutrients when food passes through, thus making him react to dairy. So now my peanut is on soy formula. They will re-check his absorbtion in 2 months and we will probablly be able to go back on regular formula! Every time we are in the hospital they find out another thing that is "different" about him. Our little kids are 1 in a million aren't they? Just another joy of loving an extra special kid!!

We are FINALLY getting outside today! Its going to be 75 degrees out in northern Illinois which means we are going for a LONG, LONG walk. We will drive with the windows down (singing childrens songs of corse) and get some fresh air n the house! Praise God for warming us up and giving us the sun! Its days like today that get me through the long winter months!!

Happy St. Patricks day! Malachi is wearing his green even though he is clearly not irish! Do you wear green on St.Patty's day if you are not Irish?

Home again

We are home!!! Malachi's CO2 levels went up after an IV over night. He is still pooping like crazy but it has slowed down. It bears me hear to see him not feeling well. He has been moaning all afternoon, even in his sleep! I read about the rotavirus and it said that one of the symptoms is stomach cramping, so im thinking that why he is moaning? I wish he could tell me where it hurt so i could try and make it better!! He is sleeping in his swing right now!!

I hope we can stay home for a LONG time! We are all tired of hospitals!

maybe?

We might be going home today! His pooping has slowed down a ton! (only one poopy diaper since 4am) They are re-doing some blood work to make sure he is not still dehydrated and if everything looks good then we can go home!!

Still here

We are still in Rockford. THe doc FINALLY came in and explained things to me. It made sense, but I still don't think I should have had to wait 4 hours to talk to any doc! They did finally put him on an IV. Unfrotunatlly they could only find one in his head. He has had sooo many IV's that he has so much scar tissue!Anyways, he is doing much better now that he has his IV. They also found out that he is lactose intolorant which has been caused by the constant pooping. I guess this will correct itself after a few months and we can go back to regular formula! His breathing is soooo much better right now. Hi resperations were always in the high 50's low 60's now they are in the low 30's! I hope it stays that way, he is not nearly as noisy! I asked about the vision test they wanted to do and I guess the nurologist wants to see him in 2 weeks. They want to make sure he is back to normal. I asked about his thyroid causing the nystagmus and the doc pretty much told me that they want to check everything else first and if they doesn't show any results then they will check his thyroid. Im going to see if we have a different doc. tomorrow and ask her about it.

Funny story. So this lady walks in our room today and I recognize her. She is the mom of one of my old friends in middle school. Aparently she (an old friend who I havent talked to in a LONG time) saw my away message on facebook (it was not a nice one haha) so she called her mom. He mom is the Director of women and children departments here! HAHA, she heard about this mornings activities (or lack there of). She left me her card and told me if there were ANY issues that I could call her and she would take care of it! Love it!

We had a nice afternoon with visitors (sara and steph, thanks, love ya!) I get to do night duty tonight, im hoping he sleeps and isnt pooping every 5 mins. Im sad we didnt get to spend today outside, it was WONDERFUL here today (even though i never went outside, I thought it would be to hard to come back in!) Looks like we will be here a few more days! Thanks for all you out there who are offering support/ideas!! We are so thankful, hopfully one day we can meet you all in person! Maybe we (all of us blogging moms) should pick a place to meet for a long weekend!! You guys rock!

crappy care...

We are still in the hospital. Malachi's stool came back positive for the ro-to virus (totally spelled it wrong haha). He has been pooping like crazy. He is down to 11lbs (hes lost 13% of his body weight since last night.) He is soooo dehydrated but the doc refuses to put him on an IV because when the do blood work it comes back fine! I am soooooooo pissed, I want to yell " look at him, he is showing all the signs of being dehydrated give him an IV!!!" And on top of it all they are still giving him his diatrutic! How come docs never want to listen to parents! I know my baby better than anyone! We have been requesting to talk to the doc since 9am. She has yet to be in today! (its not 11:15) Shes got 45mins to get her butt in here or I am requesting we get transported to a different hospital! Dont mess with this momma! is 2 hours an unrealistic amount of time to wait to speak to the doc?? Am I being crazy or do I have a right to be pissed? Sorry for the language, but mad isn't even the word to describe how I feel right now! If it were possible, I would have smoke comming out of my ears!!! (shes got 35 mins to get her booty in here!!) OKay well Im going to start packing up my things, our stay at the hospital will be over soon! Peace out suckey docs!

We're back...

In the hospital again! Malachi had been throwing up all night last night so I got him appt. at his doc this am. She thought he was dehydrated and told me that she wanted him admitted overnight. So...we came to the hospital, got admitted and they started an IV right away. He was able to keep down 4oz of formula, so Im praying he is over the flu aspect. However, that doc. on the peds floor is VERY concerned about his eyes. They still move back and forth a lot and she is worried that he has little or no vision. So it looks like they are going to do an MRI tomorrow. We are waiting to talk to the nurologist today because there are a few vision tests that they can do to see. Please pray that this is a quick stay and the Malachi can rebound from the flu quickly. Also be praying for his eyes!! We love you all and thank you for all of your support each step of the way!

Upper GI and Small Bowel

We were at the hospital for 7 hours on tuesday. No peewee wan't in the er, but he was getting x-rays all afternoon. His GI doc. wanted at upper gi and small bowel study to rule out any sort of blockage! So we did it and let me tell you it was horrible! We got there at 9am and they wanted me to feed Malachi pure barrium. Needless to say he wouldn't eat as much as they wanted him to (they wanted 5-6oz. when he normally only frink 3-4oz). So i fought with him for 2 hours to drink even 3 oz. He wasnt having it. I think he ended up drinking 2oz. I had to yell, I mean tell, the nurse that I was not going to force him to drink it, he was coughing and I was worried he was ging to throw up what he had drank. The nurse was a little annoyed with me but I didn't care. Anyways the GI doc wanted to see the barrium all the way to his rectum and thats why it took so long. It was a horrible day, Malachi was grumpy, Momma was grumpy, we ran out of diapers, he pooped through his outfit, and I didn't get to eat untill we left at 5. Im sooo happy its over and we already have the results. Everything looks great! Everything is flowing in the right direction and there are no blockages. They also dont think he has reflux, YEAH!!

I thought I would update you all on his progress developmentally. He has started rollin over again! Last night he was on his tummy and I say him lift his entire lower half off the floor. His legd were straight and he pushed up, so cute. Unfrotunatlly he has no upper body strength, we need to find some ways to work on that. He is also switching things from one hand to the other and bringing toys up to his mouth!!! He was sitting on joshed lap last night and he started playing with his feet too! Hi head control is getting a lot better too, still a little wobbely, but much better! He is doing great and making big strides.

success

Malachi got his tubes put in the morning! We were home by 10 am! It was so quick. He did great! Now we are at home relaxing in our pj's and enjoying the sun through the window!! Tomorrow we have the upper gi and small b study! Have a wonderful monday!

Something new every day

Well folks, I FINALLY got a hold of the lady who is supposed to be setting up Malachi's therapies. She informed me that he still hasnt been reffered for on-going services but he needs another evaluation and then he can go on the wait list for services. WHAT? Wait list?? Yep friends he will STILL have to wait. Why you are asking? She didnt give me a really good reason other than there are not enough providers. My blood was boiling by this point. My son has a medical diagnosis of down syndrome, he will be behind "normal" children the REST of his life. He does not need these service because I am worried that hes not rolling over. He needs them because most likely he will ALWAys be behind. Its so frustrating. I asked if there is any possibility that he can get moved up the list because he has down syndrome. They told me no, that the only children who get "priority" are children with Autism. I agree with that, but I also think children with other medically diagnosed conditions should be moved to the top of the list. So Im not sure what we are going to do. I contacted his case worker and she is supposed to be getting back to me tomorrow. I will NOT let him fall further behind. What do you all think? Has anyone else experienced this? Im going to start looking into our legal rights and that what the law says about this. I will not sit still and be okay with this. I wonder if there are other parents with children who have down syndrome who are on the wait list. Im going to fight for them and every other child who is in a situation similar to this one. Any ideas of where to start? I will keep you updated on this. Done worry kiddos, I am on it and I will get you what you need!!

Next order of business...TUBES! Malachi is getting tube in his ears tomorrow morning! I am so happy my baby will finally be able to hear!! We are confident that the fluid in his ears are the reason of his many (4) failed hearing tests! But we will find out more when we go back for our follow up and hearing tests. Pray for positive results and that Malachi will be able to hear fine!!

Tuesday this week Malachi is going in for an upper GI and small bowel study. The GI doc wants to make sure there are not ubstructions and that everything is "flowing" like normal! We love her. She also gave us a new perscription for Previsit (totally not spelled right) and she things they will help better for peewees reflux!! But wait, theres more...she ALSO told us about an over the counter pro-biotic that should help get rid of Malachi's runny poops!! I am praying this works, I am getting tired of exploding diapers and ruined clothes!!

And on friday we are having a nutritionist/feeding specialist come over to evaluate Malachi. I am wording what she is going to say!!

One more thing, Malachi is now 8 months old and 13lbs 11oz. I am soo praoud of that little guy!

ticked off

Before I get to why I am tick off I will tell you the results of Malachi's echo. There is some good and some bad news. We will start with the bad news. Malachi's heart is still leaking. The botton hole is still leaking a small amout, even after it was "fixed". His Mitrial valve is also leaking a small amout and his bicuspid valve is leaking a lot. So, this being said, his pressure between the 2 sides is not equal. These leaks may require a second surgery in a few years. The good news, the doc doesn't seem to worried and is fairly confident that they will close as Malachi grows and his heart gets stronger! They will continue to moniter it with an echo every month to make sure it doesnt get worse.

Okay now to the reason I am soooo mad!! Malachi is going to be 8 months old tomorrow and he has yet to receieve ANY early intervention! He is not getting PT, OT, ST...nothing! I called the lady in charge of getting things set up and left a few messages. She called me back but I missed the call. I am going to light a fire under her butt to get this started THIS month. My little man is already behind and I feel like he needs to be priority in her case load (haha, crazy mommy alert!) I give her today to get a hold of me if not I will be calling the lawyer and Malachi's case worker!! He has been elegiable since he was 3 months old. This should not take this long. Grrrr... They are about to see a side of me that they will not like!! My child will not fall further beding because someone can't get thier stuff together!!

Okay I feel much better! Today is going to be near 60 in the chicagoland area!! I cannot tell you how happy I am about that! Its has been a long cold winter and Malachi and I are itching to get outside and go for walks and play outside!! I will be wearing flip flops today!! Please come soon spring!!!

Pictures and babies

Those are a few pictures from the hospital when the photographer came in. I think they turned out great!!

Today we had a cardio. appt for an Echo. It went well and are waiting to hear back from the doc. about the results! We are praying for a good result! While we were there I met a mom whose daughter has Down syndrome. The sweet little girl was 3 months old and as cute as can be. She will also be needing a complete AV canal. Its so fun to meet other moms who understand and can relate to us!! I was at the mall this afternoon and ran into another mom of a 6 month old with ds. He was a cutie but it seemed like mom was still in denial about the situation. Please pray for her that she can find comfort one the new journey she is traveling. I hope I run into her again I would love to be a positive influence in her life!

We found out today that peewee is going in for tubes on monday next week! I am super excited that my little man will be able to hear!!

Things are going great and Malachi is getting back into a routine and enjoying sitting up in his chair and bouncy seat. We cant wait till we can do tummy time again!! Hope you all have a wonderful day!