Pray Request~Issac

I found out this week that my cousin's 5 year old son Issac was diagnosed with leukemia.They live in SC. He has a little sister name Silvia. The Drs said they caught it in time for treatment outcome to be a positive one.

*Pictures borrowed from my cousin's fb page*

31 for 21 Day 9: Prayer Request

Those of you in the DS community have heard of Joany George. Her sweet daughter went to be an angel 18 months ago. Carly had Down syndrome and had fought and won her battle with the horrible "L" word (Leukemia). She unexpectedly passed away. Recently the George family saw their oldest daughter off to Navy training. They need prayers now as last night while they were out their house burnt down and their son Brad did not make it. They really really need prayers. Thank you so much.

Prayers for Preslee's Family

*Update Preslee is now an angel, She went home to heaven. Continue to pray for this family in the time of need*I received an email today about adding a little girl to my prayer list. I sat down to read about her, and decided she needed more than just an add to my prayer page.

Meet Preslee Jo Sullenger, she was born 12.17.08. She is the only child of Ashley & Patrick Sullenger. On July 9th Preslee fell into a canal and 2 miles down a farmer found her. She is in critical condition at Primary Children's Hospital in Salt Lake City.

This beautiful little girl needs lots of prayers. Please keep her in your thoughts. You can help the family and get updates at Helping the Sullenger Family and you can read more about this sweet little girl at the families blog The Sullengers.

 

Happy 4th Of July Prayer Request

Please pray for Kate McRae. She is only 5 years old. She had a massive tumor on the basil ganglia portion of her brain. She had brain surgrey yesterday and she is in need of Prayers this 4th of July. Just spare a few mins while enjoying your families to thank God for them and pray he heals this little girl.



This is her Caringbrigde Page you can read all about this Beautiful Blonde Baby doll
http://www.caringbridge.org/visit/mcraekate
Here is the video her mom and dad made asking for prayers.

I Need Help

Ok so I'm on a misson to save the world ok not really the world but to help families with sick kids. I have Jaxson's fundraiser going right now and I have a few other families I'd like to help in the next few weeks. I'm thinking about starting a blog just for Fundraising for our special kids. Not only Down syndrome but any sickness. My only problem is I am soley funding these fundraisers meaning I'm paying for everything I give away. and being a SAHM myself. money is not always easy to spare I don't mind really but if any of you readers know how I can go about contacting people to give away items for these fundraisers i'd love to help or if you have a sick child I'd love to feature. email me at adjolly@ymail.com again this is not for me this is for you families who need support.

All About Jax Today

I'd like to introduce Jaxson.

Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe seizures.

Like alot of our T21 babies Mr. Jax has been through alot in his short life. His Mommy, Daddy, and 3 brothers love him very much. He is a handsome little man. As you can see from the pictures his mommy Lacey let me borrow from there site..

His mommy Lacey also has set up a blog called Jaxson's Blankies for Babes. The blankies are for kids of all ages with life threatening illnesses. No child will be denied a blankie, so don't be afraid to fill out a request.

This is one of my Favorite pictures of Jax. It makes me just wanna pick him up and love all over him.

Truly God's Angel

Mr. Jax with his Phoenix's Lucky Bear Supporting Cystic Fibrosis(more about Phoenix Tomorrow)

All ready to come home are his last hospital stay this past week. (Adorable Punk Baby)

So in honor of Jax and his family I'm doing my first fundraiser on my blog. I'll post all the details in just a few minutes.

Baby Bennett Will Be Here Tomorrow

Adrienne from Our Unexpected Journey is having baby Bennett TOMORROW. Mr. Bennett will be entering the world sporting his designer genes (Down syndrome). He also has a heart defect so pray that as he makes his way into the world he'll be strong enough until time comes to fix his heart. So pop on over and read all about Bennett, his mommy, daddy & 2 sisters(who are cuties)

We Wore Orange For Stellan

I'm sure most bloggy friends know Stellan. *If you don't besure to click his picture in my prayers section to find out* Just like a bizzilion other Stellan Fans, we wore orange yesterday. To show our support and prayers for Little Stellan during his surgery.

Me and Eian wearing Orange starting our day.

Alex wearing Orange playing his DS.

Eian wearing Orange Sleeping

Eian wearing Orange sleeping Again :)

April 1st- Long Over Due Update

Ok where to start. Well the wireless internet at my moms is DOA. :( So I'm having to use my dad's computer when I can. But I'm about to order internet for joel's house.

Speaking of yes we have moved back in, in order to help both of us with money problems. We are not together right now. I do have hopes that soon we will be but thats a whole different story. But the boys will have their own rooms. Moving sucks.

Our dog is pregnant, she's a brindle pit/bower mix. Jada is a beautiful dog. We have no idea with stay is the father, I hope they look like her.

I am officially a crunchy mom. lol. Ok so E wears cloth diapers at home and I use all natural laundry detergent and Have cloth wipes.

I really love the cloth diapers but I think I may need a different type of inserts in my pocket diapers. as he leaks out the leg elastic. I have a few more diapers ordered. :)

I've been doing good still down in the dumps but thats cause I'm still off my meds. Just don't have the time to get into the dr but I need to.

Eian did end up in the hospital again last week. Monday afternoon to Wednesday night. Same thing as before the respiratory distress from the cold. He was also really dehydrated this time. But he's back to Eian again just on 3 new meds, so thats a total of 5 now.

Alex will be 4 on the 19th. today is actually my original due date with him. It was the right one too, but the dumb Dr changed it. to the 21st. If he had not stopped my labor 3 times when I was already past 37 weeks by the real date I proli would have been able to have him natural and not by c-section. I know when and were Alex was conceived since Joel and I did not live together. I'll save ya from those details lol.

On a more serious note Please Continue Praying For Stellan.

Update

Eian's been sick the last few days and Monday we took him to the dr and she decided as soon as she come in he was going back in the hospital. So that he did. He just got out today. I'll post more tomorrow along with some pictures.

Continue to pray for Stellan please.

Pray For Stellan

Please pray for Stellan He's in the hospital right now. The dr's are trying their hardest to get his heart slowed down his heart rate is close to 300 since last night. Go to his blog to see updates from his mommy. He's a little miracle from the start let pray God grants them another Miracle

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.


This is my 1st Hi/Lo post bear with me.

Monkmee Hi's
Alex is doing great with his potty training. He's had every few accidents.
Eian is walking like crazy and had 2 great days at therapy.
I'm getting my car back, so my mom can have her's again.

Monkmee Lo's
Both boys have been sick this week. Eian really scared us the other night he was eating and coughed and sucked the food into his lung. He coughed so hard he had an asthma attack and had to have his breathing treatments.
I've been on the lo side the last few weeks and it sucks.
So far no one is interested in my giveaways.


DON'T FORGET TO PRAY FOR ABBY!!!!

Pray For Jonah

Patrice and Matt welcomed their second son Jonah Alexander into the world on February 27th, 2009, who was born with an extremely rare genetic skin disorder called Epidermolysis Bullosa. Jonah is currently in Brenner Children's Hospital, fighting for his life. Patrice and Matt's 1st son Gabe, was stillborn at 37 weeks.

I started following this blog shortly after Jonah was born. I saw a prayer reguest on Kelly's Blog. Today I'm asking my Bloggy friends to pray for this little guy.

Meet Kennedy!

Kennedy was born May 16, 2004 and was diagnosed with Down syndrome shortly after. She was also born with an extra thumb on her right hand which was removed on November 22, 2004. Later, she was diagnosed with failure to thrive due to slow weight gain and after running lots of tests, changing her feeding habits, and even being accused of starving our baby, they discovered that she had a blockage in her intestine. On February 2, 2005, Kennedy had surgery for a duodenal web. Her surgery went really well and she has grown lots since then!

Kennedy also has hydronephrosis (fluid on her kidney) on her right side, and she has reactive airway disease which will most likely turn into asthma eventually. She also has a vascular ring (a blood vessel from her heart wrapped around her esophogas) which may have to be operated on in the future. Kennedy dealt with aspiration issues with thin liquids and had to have her liquids thickened, but she finally outgrew that in August 2007. Kennedy was diagnosed with severe sleep apnea in 2006 and had her tonsils and adenoids removed which mostly resolved that problem. She is also pre-disposed to Celiac's disease so we have to keep an eye out for that.

On April 16, 2007 Kennedy was diagnosed with Acute Myelogenous Leukemia (AML). She started an aggressive treatment of Chemotherapy on April 20, 2007 and completed her last round on September 30, 2007. We are praying she will stay in remission forever!! We go to Vanderbilt Children's Hospital once a month now to get her counts checked.

On February 19, 2008, Kennedy was diagnosed with severe Atlantoaxial Instability and Atlanto-Occipital Instability. The C1 and C2 vertibrae in her neck are very instable (AAI) and there is a huge gap between her skull and C1 (AOI). Any bad fall or injury could cause her to be paralyzed... or worse. It is also showing impingement and swelling on her spine. She will be having surgery in Philadelphia at Shriners in the next couple months and will be in a halo for 6 months afterwards.

* You can visit Her mom, Renee's Blog for updates.

Update On Shelly and Twins

*Sad*
Here is Shelly's post from her appt. Monday


Well i had an appt. today. I received bad news once again. Baby B- Dakota passed away. Baby A- Carter is still doing great. The dr said that if the TTTS was going to reverse-and cause Baby A to be anemic- it would have happened within the first 10-15 min of Baby B dying. And he said from the ultrasound that it looked like it did not happen. But there is a chance that within that 10-15 min he could have been a little anemic and caused brain damage, but there is no way to tell. Then he said the only thing to worry about now is to check his blood flow in his brain again-which they did today also and it looked good, and to worry about pre-term labor. he said if the deceased baby was on the bottom that it would cause pre-term labor to most likely happen at any time. But since he is on top, that there is a good chance that it might not happen at all. He also said that Dakota passing away probably saved Carter's life. So that being said, Dakota died so his brother could live.I want to thank everyone for all the prayers. And any prayers from now on is still very appreciated.

Shelly & Twins Update

Here is a update from shelly after her dr appt. yesterday. for those following the story. Please keep praying for Carter and Dakota.

There was no change in the boys today. The fluid still looks good around Baby B-Dakota. Nothing has really changed. I go back on Monday to make sure nothing changes for the worse. They said they are going to watch them very closely. I will most likely be seeing them every week. The dr said that there is a chance that when Dakota gets bigger and if his sac doesnt grow, they will have to poke another hole in his membrane like they did the first time. Im hoping they will be ok with no further interventions, but i will do what i have to, to make sure they survive.Please keep praying for them. They need all the prayers they can get.

Please Pray for My Friend Shelly

and her twin boys Carter and Dakota. She is 17 weeks pregnant and has a 1 year old son, Chase. I went to school with her this is her post from myspace. Please say a prayer for her and her family.

Baby A- Carter
Baby B- Dakota


bad news. Im so depressed. The twins have developed twin to twin transfusion syndrome. Which is really bad when it starts this early. Baby B was measuring 14 weeks and Baby A was measuring 17 weeks. Baby B is what is called stuck baby. The membrane around the baby is so close to the baby due to very low to almost no fluid in his sac that he is stuck up against the wall, while Baby A has lots of fluid and is swimming around everywhere. They told me the chances of them surviving was very slim. I had some choices to make. They said if i do nothing that there is a good chance that i will miscarry. I could do an ammnio and poke a hole in the smaller babies sac to help let more fluid in and then drain some off of the bigger one. I chose the ammnio. They actually had to poke me twice in two different places. well after they tore the little ones sac they saw a little improvement. The sac had begun to fill up a little bit with more fluid. But the dr also said that if this works that it will only be temporary. They are too little to survive outside the womb. He said they might make it to 24 weeks, they may not. The ammnio can also make me miscarry or go into labor. If Baby B dies then the process would be switched and Baby A would then become like Baby B is now. Since Baby B wouldnt be able to give any back. So he would then just receive all the nutrients and Baby A would be in the same position as Baby B is now. He said there is a good chance that we will lose either one or both of them. I go back in the morning for another ultrasound.




I cried when i saw the look on the ultrasound techs face as she was doing the u/s. i knew something was wrong. I could see that something was wrong on the u/s too. Then i cried when my boyfriend(Joey) and i were in the room waiting on the dr to come in. Then when the dr was explaining the choices i cried again. Then he did the ammnio. Im still so upset. I feel in my heart that i will lose both. Just like this morning when i felt i was going to get bad news b4 i even got to the dr.


any time anyone mentions whats wrong i break down in tears. I dont know what to do. none of the choices are going to give them a good fighting chance. I was told to come home and stay off my feet. Since it was like it had 2 ammnios done.


Heres the news i got today.


-Thursday

We had better news today. Since they popped the sac that the smaller one was in so he could get more fluid, it worked. Yesterday there was less than 1 cm of measurable fluid in his sac. Today there is over 5 cm. Which is very good, average range is from 2cm to 8cm. The dr is very encouraged he said. He thinks that is a great improvement. But still anything can happen. They are just going to watch me very closely from now on. I go back on Monday to check them again. We are just going to take it from here. If they do fine from here then we will try and go as far as we can into the pregnancy as long as the babies are ok. But im not getting my hopes up. The dr said that it is good that i am being optimistic about it, cuz anything can happen. I feel a lot better today but still optimistic.


ALL prayers are helpful. And i appreciate all that you girls do for me. Im just trying to take it one day at a time and hang in there.

Here are some pictures

Twins at almost 12weeks

Baby B Dakota

Baby A Carter

Big brother Chase

Please Pray For Emma

I wanted to take a minute and blog about Emma. as you may have seen her button on my blog


Emma is 5 years old and has Down syndrome. She was adopted from the Ukraine in March 2008 by the Cornish family who also adopted Micah at the same time. I have followed their adoption story since before they left for the Ukraine. It has been a great story of love and family. You can read all about the family and their story at their blog or by clicking on Emma's button.

You see the reason I am blogging about Miss Emma is she needs your prayers. She was born with a heart defect. I'm not good with all the medical terms and stuff but. she needs prayers that the doctors will be able to fix it. The Cornish family is a very amazing family they are very much an inspritation to and I have never meet them. just stop by their blog and add Miss Emma's button to your site.