Ok I have Lukes full diagnoses! he has psuedobstrution-which means that there isn't really a obstruction but he present like he has one. malabosption which means he can't absorb any nutrients , poor motility means he can't move or digest anything through his intestines and failure to thrieve plus neurogenic bladder his bladder is as big as a 8 yr olds bladder. He has a colostomy and a ileostomy and broviac line thats feeds him all his nutrients.

He has all these stuff wrong with him...and he is probably the happiest baby I have ever seen!!

Little update on Breonna she had her MRI...And the mass is still there but it hasnt grew so thats a good thing...that means its not a tumor!!! There is still fluid around her brain but thats why there is a whole in her skull to drain it off...and thats still opened and still working good!! So thats all good news for Onna!

Just a little update on Luke..He had a drs appointment the other day...And the drs told my sister and brother in law that they think that his problem in neurological! They think his brain isnt telling his intestines to work..But they are going to wait to determine anything intill sees the dr in Boston! Plus they are going to take him off the IV because that fats and vitamin's they are feeding him can destory his liver...and they said the survival rate for intestinal transplant is good..but the survival rate of a liver and intestinal isnt so good...but they arent going to do anything until they get back from Boston...Lets hope that this dr in Boston is as good as they are telling my sister and bro inlaw!!!

Srry I havent blogged in awhile! Luke has been doing really good...He is 14 months old...and he has OT and PT coming in to get him caught up to where he is suppose to be in his motor skills...The OT guy said he is doing good..he should be where he should be for his age!!! So thats good...He has been going to Rochester to New Drs out there...And the GI drs there actually know what they are doing!! But they said they have never seen anything like Luke before...So they are going to send him to a Dr out in Boston who is a motility specialist! Because the GI drs thinks its best if Luke has a transplant! But they want to see what the dr in Boston says first....He wont be getting into him until Dec!! But they want to get him on the donor list...Just incase!!! I will let you know more in the future!!!

A little on Breonna....She is having headaches again..So my sister is going to call the drs tomorrow...I will let you know what happens from there...Please keep her and Luke in you prayers!!

I just thought I would update ya on Onna!! She had a Drs
appointment today...She still cant be realized to do much because
the cut on her head still isnt healed...but the hole and the fluid
looks really good..She needs to go back in a couple of wks and then
they will make an appointment for a MRI to see what the mass is
doing! I will let you know more...when I get more...Luke is home
and doing good so far!!! He will be going to Rochester now for his
appointments now!! Better Drs there!! His...

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Just thought I would update on Luke and Breonna! I went to go see Luke on Saturday!!! He LOOKS SO GOOD!! He should be coming home sometime this wk..My sister and Brother in law have a meeting with dr today so he can tell him what they have to do when they go home..Luke will becoming with a Pic Line for a while! So they have to know how to take care of it..So he doesnt get a blood infect and end up back in the hospital...We are so hoping this is the last surgery he is going to have to have!!

Breonna is doing good..She will need to be watched every 3 months..to make sure the mass isnt growing! If its starts growing then they will have to do radiation to shrink it!! So we are hoping that doesnt happen!! So please keep them both in your prayers!!!!!!!!!

A little up date on Luke and Breonna...Lukes pneumonia is almost gone...his oxygen has to be at a 4 and he is at 8..so they have to keep him the respirator until he gets to 4...Onnas surgery is tues at 10:30! She has been getting more and more headaches! They gave her meds to help with the pain! But other then that..she is doing ok..She is going to Childerns Hospital tomorrow for PreOP to get her all ready for surgery! I want to thank everyone for all their thoughts and prayers!! Please keep them coming!

Lukes surgery went really well!! He is still on the respirator
they want to keep him on it a few more days!!! I know I made this
for Luke but we got some more bad news the other day...My niece
Breonna has a mass on her brain! They did a MRI today..the dr said
it looks like fluid on her brain..He wont know for sure until he
does surgery but he does know its not life threaten THANK GOD!!!
She will be having surgery on the 14th of April!! If you could had
her to your prays I would soooo appericate...

Luke had to be put on a respirator today!! He isnt able to breath on his own!! He also is going to be going into surgery!! They are going to go in and clean out his intestine because they full of Gas! They are going to move the bag of his large intestines and put it on his small intestines! They are going to do some exploratory on him too!! Plus they found out his colon is dead!! Thank you for all the Prayers...You can never have to many!!

More on Luke!!! Luke has Pneumonia! His lungs are filled with fluid!!! They are afraid they are going to collapse because his belly is so BIG right now...because its so filled with gas...that its making his stomach lie on his lungs!! They are thinking they are going to have to put him under so they can go in and relieve all that gas!!! I will let you know more...when I hear more!! Please keep those prayers coming!! Thank you!!

Just a little something on Luke...He has been very sick for the last 2 wks..He has an infection in his intestines!! Luke will be going into the hospital tomorrow to get an biopsy! We wont know anything for 10 days after the biopsy is done...Please keep him in your Prayers!! We need lots of them!! I will let you know how the biopsy went and what they say!!!

P.S. Enjoy the pics!!!!

Just a little update on Luke! He has an ear and sinus infection so he is on meds for those..His biopsy is on April1st..I will let you know how that goes and when the results come back! Please keep the prayers coming!!!!!!

Luke had his drs appointment with the GI drs..He is to under weight..They said its not life threaten but it could become life threaten! He is only holding 37% of his Nurtations!! Which is NOT good! They are going to do a biposy on his small intestines! He will have to be put him to sleep for that because they are going to go through his mouth! My sister and brother law asked what could be done to fix this..They said anything between giving him enzymes and a transplant! The biposy will take up to 10 to 15 days go to come back and when that comes back they will go from there! The Drs office as to call with an appointment..I will let you know what that is!

Please keep Luke in your thoughts and Prayers!

I seen Luke today!!

I seen Luke today! He looked SO GOOD! The best i have ever seen him look! He is gaining weight..His belly wasnt blowed!!! I was so happy to see him like that! He at a whole jar of Pears!! He belly did get a little bit bigger after that though! But thats because it takes him longer to digest his food because of his poor molity! But he really looked good! I just so excited..I will let you know what the DRs say on wed!!

Luke!

I have more on Luke! The new food is helping with his weight but not with him pooping! They have to see the GI Drs on the 25th..So I will let you know after they come back from there! Talk to ya soon!

A little update on luke!

I just thought I would let everyone know..That Luke is doing ok! He has a little bit of a cold..But he is doing good! I will let you know when his Drs appointment is to see the GI drs! When I get more info..I will let everyone know!

The Benefit!

The benefit went really well! We raised 5000.00!!! We had around 500 people! I want thank everyone that donated and helped out at the benefit! My sister and brother in law appericates everything that everyone has done to try to help them get Luke healthy!! Thank you again!!

P.S.
Enjoy the pics!

Lukes Dr Appointment

We went to Lukes Dr appointment today..They said the reason why Luke isnt gaining anyway weight is because he has to much fat content in his stools and not in his intestines! He is suppose to gain 30-40 grams a day and he is only gaining 10 grams a day! He is only 14 pds! So they gave her this special formula that is eaiser to digest and as more calories to help him gain weight. And if this doesnt work..Then they are going to have to put in a feeding tube temporary! My sister has to make an appointment with the GI Drs! I will let you know when that appointment is!
Thanks
Amee

DRs appointment tomorrow

Luke has a drs appointment tomorrow..I am going with my sister tomorrow..So will let everyone know how it when we get back!

More about Luke

Hi, Just thought I would let you know that Luke as his next Drs appointment Feb 2nd! I let you know more when I find out more! He is doing ok..There was a really nice article written up about him in our local news paper! It was bigger then what I was thinking it would be! Thnks again for who is helping with what they can!! He is becoming a local celebrity lol!

P.S.
Enjoy the pics!

Update on Luke!

Update on Luke. Luke had a Drs appointment on Monday! The drs want my sister to save his stool for a wk to see if he is getting the nutritiants that he is suppose to have...because he is melnourished..So from there they will see where they go..I think if he isnt getting the nutritiants they are going to put a pic line in him so my sister and brother in law can give him fluides that way.I will let you know more when I get more info..We are having a benefit for him on Feb 7th to raise money to offset the cost of medical treatment..like I have stated in my first blog..If anyone cares to donate anything that would be great..

My nephew Luke

My nephew Luke was born 5 wks early! He was born with stomach and intestinal malrotation meaning his stomach and intestines weren't connected to the abdomen wall,and has a result to that..his stomach did flip flops and his appendix ended up on the wrong side of his body..Though he was born with this problem, the Drs didn't find it until he was 4 months old Luke's malrotation caused him to have a sigmoid volvulus and a neruogentic bladder,making his bladder the size of an 8 yr old's bladder. His surgeries have included a gastopexy, blowel resection, colostomy and appendectomy..But to despite them, he continues to have poor motility in his intestines!! He will inevitably be back in the hospital! With 3 different Drs offering three different opinions. He will need one of two different surgeries in Buffalo or he may have to travel to a children's hospital in Boston! There is even talk of an intestinal transplant which will take them to pittsburgh.

So we are throwing him a spaghetti dinner benefit..To off set the medical and traveling expenses! If there is anyone that would love to help..You can email me! ameesheehan@windstream.net..