Its been a while since an update . Summer has been crazy busy . Timothy is now 22 months old . This month he has learned some new and exciting things he has learned to grasp things with his right hand. He rolls onto his belly but doesn't have the arm strength to get back over . He is giggling at things he does . He laughs at his toys . We found out he does have a developmental delay but working with him we will change that . Child development services with start back but here in the fall .
No more outings to the stores after October, per germ season. He is currently fighting off an ear infection but his lungs sound great .
We have ordered his new wheeler chair so he can be upright 90 percent of the day to help prevent hip dislocation and scoliosis. We have found a wheel chair van so Timmy can ride in his wheel chair because he has grown out out his current car seat and he need to be strapped in at the hips and chest so hes straight up and not hunched over . With the lack of muscle in his body its makes his bone more susceptible to bending kinda like a birch tree in an ice storm , the don't bend back the longer its that way . The van is on hold till we come up with the funds for it .
He went to the dermatologist for what what thought to be cradle cap turned out to be psoriasis .Its all over his scalp and his face legs and back , so with steroid creams were hoping to get it under control.
In home nursing is still a no go because no one knows how to suction him like we do so he doesn't aspirate into his lungs . They don't listen and just start cramming things down his throat . So its mom and dad we are his nurses.
Timmy is learning a lot from his new baby brother like how to raise his voice to get what he wants . They talk to each other a lot and Timmy is always watching Oliver's feet and his moving his more too. I think they will benefit from each other .
Tim has lost more weight is down to 17 lbs we are trying to get him a product call real food blends.com so he can eat real food and not Pediasure and gain weight back . Its is blend food that can go in his G-tube that is more nutritional and will stick to his bones so to speak .
Next years AMC convention is in Jacksonville,Florida on July 2-5th. We really think Timmy could benefit from us going to this because I just feel like were not getting the help or answers we need here We have opened a saving account to start saving money and fund raising to make it there next summer . Thank you to everyone that follows his story . God Bless you all
So they took the Gj tube out and in seconds tim was relived and you could see it on his face! He may be going home tomrrow as long as his o2 levels are ok .thank you everyone for your on going prayers! He seems happy and doing much better . This will be a long road of trying how to bypass the stomach for feeds.
So they finally changed out Tims feeding tube.He went from a g tube that feeds into his stomach to a g-j that bypasses the stomach and he is fed straight into his intesines. His body did not like the change at all . Lots of extra stomach fluid and hes not handling his feeding into his intesine very well. Than when it was time for rounds which is where all the docs discuss how hes doing with us we find out they put the wrong size feeding tube in . He is also spiking a temp between 101 and 102 .So Tim will be here at least another 2 weeks if not longer. Gas and food is now taking a toll on us. I cant be with Tim everyday like I want cause we cannot not only afford it but now with a newborn at home , he needs me too . Dad has had to call out alot or cut his hours back due to the circumstances with Timothy. Please pray long and hard for our boy hes a fighter and I have faith in him. Every penny helps us be able to get to see our baby boy daily . Please Lord give us the strength to bare all this in our lives . Thank u all
Update : So it was a no go on changing out Timothy's feeding tube for a gtube to a j-gtube because of his respitorty status . The dr wants his nurtion status to be base line before we can go home so we may be here a month we may be here another week. He lost 3 pounds since his last hospital stay and hasnt gained it back and has actually lost more . So they are putting him on a higher cal pedisure . But right now it seems like his body isnt obsorbing the nurtients like its suppose . They dont want him to leave till he shows definate signs of wieght gain . We will be driving back and forth to see him. We will have to separate our family if hes here longer than the next two days. Dad will have to be at home with Mason to get him on and off the bus and go to work and I will have to stay at Ronald Mcdonald house with Oliver to be close to Tim .
They still have him on 02 and nebulizer treatments every 2hrs. Antibiotics through iv and daily therapies which is a regular . But as for now his respitory status is still come and go . Please pray with us everyday . I have faith he will pull through like a champ. Go Too Tuff Timmy showem what you got . Every penny helps since we are driving an hr each way everyday to see him and be with him as much as possible .
update: So Timothy is still a mystery to the Dr's they dont know what he has every test they have taken he has passed with flyig colors . The said they found a strange bacteria in this blood stream but it also might be from the needle picking up the bacteria off his skin when they took his blood. He is still on 02 and still on a cpap machine they hope to ween him off it today and go back to straight o2. He is having nebulizer treatments every two hrs and resting in between .Tims a fighter and I have in him and the lord to take care of my baby. keep us in your prayers and every penny helps with gas since we have to travel so much to the hospital cause of the other kids and having a newborn . Food is expensive and the hospital unfortunatly only can gave a 5$ food voucher a day . PRAY PRAY PRAY
I dont get internet at home so updating latley has been hard.
We move three weeks ago into our own home with plenty of room for the kids . Tim had been doing great since his discharge from the hospital two months ago. on wendsday we were woken up by Tims consistant coughing , 5:30 am I attempted to take him to the er but his breathing was so labored he couldnt handle riding in his car seat. We called 911. we were takin to the local er which I ask the amulance cant u just take me to Bango ? Nope respitory distress he needs to be takin to the closet er. Mind you Maine Coast is 14 miles away and Banor Hospital is 16 whats the 2 mile diffrence?
They did nothing for him but kept him stable and sent us to Eastern Maine Medical Center cause the local hospital didnt know what to do with him as always.His temp was 99.2 - 100 all day yesterday and last nite He made a turn for the worst at 3:00 am . His temp shot to 102 his breathing was labored even more even with nebulizer treatments. We were told if he gets worse they will send him to Portalnd casue of his complicated airways if he needs to be intubated. I will update everytinme I hear something . Dads at home with other latest addition to the family and his brothers . So being away from my newborn baby has made it really rough and hard to see my boy alll connected to tubes worse than he has ever been . Please pray for us and keep God in toe , hes our miracle worker . Gas and food is our biggest expense to be here with Tim . Dad had to take time off from his new job to take care of the kids while Im here with Timothy. Thank u everyone for all the support
well still no luck on getting him off 02 we tried for 2 hrs today did good but cant get him to stay up while hes asleep . Been here a week now thoughts and prayers he can go home soon as long as we can get him off o2
UPDATE: Timothy is on the up hill climb finally . He is on room air at the moment been a tough time getting him off oxygen for longer than an hr . His pnemounia is still very clear in the xray so it hasnt shrunk down any but hes vocalizing more and moving around more . His antibitoics are taking a toll on his feeding tube site and his poor little bum. He too Tuff Timmy and I have faith he will bounce back soon ! Every penny helps us get back and fourth to the other kiddos at home and tims needs Thank u to all who are following along with our jounery with AMC
Wanted to update on Timothy.
Timothy was brought into the ER on Ellsworth Maine on Monday morning for a high fever the night before of 104.5 In hopes it was just a little bug he caught but that hospital doesnt know much about him so we were takin by ambulance to Eastern Maine Medical Center up to the PICU . They ran some test and determined at the time he had a viral bug and severe dehydration . After letting it run its course for a day. He woke up the next morning with green phlem and they were hard chunks. They sent him in for xray and found a large white mass in his lower right lung . First we were told it was a lung in fection. This morning (wendsday) we were told he has pnemounia. For a child like him this could be a life or death thing. Right now he is on iv meds and pedialyte. very very sleep boy so here we are 1 1/2 away from home with what they say could be a week or more stay here . Please pray for Tim and a healthy and safe recovery.
Every little bit helps . We are saving to get a van we no longer have car so we are on a misson
We are truly in need of help here folks . We have been displaced from are home since two days before Christmas with an ice storm . We had to leave home due to no heat, no electricity to run Timothy's machine . We got our power back some time late last night. We got home today to a flooded home and our bedroom destroyed by water damage our cloths Timothy's cloths , Timothy's medical supplies , our bed, tv, and dressers are destroyed we need all the help we can get . This has been a very hard especially with all of Timothy's needs .
We are in need of some help heating our home , we have applied for HEAP but we don't go till February.We are back to taking care of Timothy by ourselves with no nursing care in our area for him so for mom and dad to work is impossible right now. We live in a drafting trailer that we have done everything we could to keep the heat in . We pray for God to guide us every day without breaking down , Merry Christmas to all
Its been a while since we have last updated about Tim . Things are tight with money so we have no internet to keep you all informed .We are driving to Bangor which is about an hr from us once a week for cast changes to straighten Tim's feet out , December 9th we will be going in for a heel cord surgery that will loosen the tightness in the knees and ankles to help him hopefully walk by the age of five. Hes making good progress with his feet and than its on to maybe learning to swallow . He is becoming more vocal but still not strong enough to sit up. The nursing care in our area is slim to none so its up to dad and I to take turns with his nightly care. Christmas is coming and this is Timmy's first Christmas at home so excited He had a good Thanksgiving we gave him tiny tastes of whip cream. Thank you all for donations thus for we. My god bless you all and remember every penny helps with gas to and from his appointments and his dr bills
7 days to go till the Shriners
18 days oh the possibilities Shriners can do for Timothy
20 days and counting, till the shriners hospital visit. Lets help Timmy get there
So here we go :) The Shriner's called today Timothy's appointment is August 12, so excited cant wait to get things rolling to get his legs moving and maybe just maybe he will have the blessing to walk by the time he is 5 . We do have to rent a car to get there cause ours would not make it that far so we are on a mission to raise gas money and funds to rent a car . We will be staying at the Ronald McDonald house in Springfield providing there not full . Shrine's does get a hefty discount on area hotels too. God bless you all and my god help our little miracle boy walk someday .
Timmy blew the neurologist away with his waving at people and copying people noises . They put in a referal to go to the Shriners Hospital by the end of the summer we hope . God has truly blessed us these last few day and help us grow more and more of a bond as a strong family . We grow to learn and make the world known of Arthrogrposis ! We are still raising money for down paya van , and hoping to get a fundraiser together to raise fund to go to the conference next summer
Headed to Portland Tuesday . Timothy is going to see the neurologist to show him his new moves he has found his hands , he is trying to reach for things in is view and is rolling over ! These are things the dr said he would never do ! The Lord works in mysterious ways!
We are going to have to rent a car to make the drive cause ares wouldn't make it that far , We are asking any donation is not to small . This appointment is very important to us. Hoping for new testing to help us find a clue as to what caused this to Timothy in the womb . To find answer would be the greatest gift ever it would help us learn if he has the capability to gain muscle tone to help him Swallow and maybe walk by the time hes five . Please help us make there on Tuesday ! God Bless you all !
We are planning a visit to Boston shiners Hospital this summer for Timothy's orthopedics. He weighs in at 15lbs 12oz . Hes moving more and more . The money we raise now is going to surveying of land and ground prep for us to build our new home for Timothy to grow and improve in ! Every penny helps
Timmy's doing great at home . Summer is coming upon us on so are the mosquitoes we are now trying to raise funds to fix the screen on our front porch its the only screen protection for the house none of our windows have screens . Bugs carry various diseases cant needs to stay away from Thank you for all of everyone's support so far . We are making a garden for fresh veggies for Timothy to have blended diet by fall and less formula
Steuben Volunteer Fire Department will be hosting a Spaghetti and Bean supper , donations go towards his medical bills and a handicap accessible van .Donations of baby cloths and hand sanitizer are greatly appreciated . Timothy has a rare congenital disorder called Arthrogryposis Mutliplex Congenita. Donations can also be made here http://www.gofundme.com/1bfi18
Its been a crazy week here haven't been able to fill you all in on Mr. Timmy . Timothy has had his off days like any kiddo . He's spitting up a lot today and I mean lots but after he does it and gets it all out hes back to happy little boy ! We will be venturing back to Portland on the 27th for his g-tube check and hoping to get a mickey button since he is moving his arms and fingers more he pulling on his peg-tube. So we will be staying the night at the old ol Ronald Mcdonald house if we get out to late. He is learning to smile its so awesome to have him awake up and he looks up at you with those big beautiful eyes and cracks a big smile to his best ! He amazes us everyday . He can sit up for a few minutes on his own and tries so hear to pull himself to sitting position and coos and gets mad in turn makes him even more determined in life ! He has a very proud nana she came to visit us the other day of finally held him and he melted her heart .
We really want to try and get to the 8th AMC Conference in Las Vegas were asking for donations for us to try and attend this will help us learn more about Timmy's rare condition .
Steuben Volunteer Fire Department will be hosting a Spaghetti and Bean supper , donations go towards his medical bills and fuel to go to appointments in Portland and Boston. Donations of baby cloths and hand sanitizer are greatly appreciated . Donations can also be made here
Timmy came home on the 25th doing well getting use to night nurses. We are currently trying to raise money to go to the AMC (Arthrogryposis) convention in Las Vegas , Nevada in July ,This will help learn how to support Timothy and his needs and to learn about some of the best doctors in the world that can help him . Maybe help us learn the why or what cause this to Timothy and to most of all give us support to know we are not alone. Any little donation helps . We would be taking the angel plane to get there ,which carries patients with medical problems at a speedy pace without all the crowds of people on a big plane . Thank you all and god bless
Monday is the day ! We are praying hard for this day and hoping to get his room done and get all his needs crib, changing table , a washer and a dresser
Well Timmy weighs in at 12lbs and 13 oz.Hes cooing and almost rolled from his back to his belly ! Hes still on oxygen cause hes flighty when he sleeps ,but keeping out fingers crossed and prayers all around he will be home Thursday afternoon !
So Timothy is back on oxygen again . He will be going home on it . Trying to get his feeds adjusted because he is spitting up a lot and if he does that he call aspirate into his lungs which can cause pneumonia . We are going to try for Thursday to bring him home as long as he stable still. God Bless keep him in your prayers. Still have to get a washer and some furniture items anyone willing to donate would be amazing !
Well Timmy wont be home on Friday :( He has become sick . They trying to figure out what it is we have to wait 24-48 hrs for a blood culture to come back. He had vaccinations last week and his body doesnt not take well to change . For now they started him on antibiotics and hes on oxygen cause he wont keep his Stat's up . Please pray for our lil man
Timmy will be home way sooner than expected we have to finish his room by Tuesday. Still in need of tape ,mud and paint for his room to be complete. Any little thing helps it all adds up .
Timothy may finally be joining us at home come next Friday or the following monday
So exiting! We are looking to see if some one has a washer and dryer they would like to donate to Timmy's family. everyday he spits up but since he can't swallow it down an overflow of fluid comes out and so we will have lots of extra laundry.on top of that Timmy has moms fair skin so he break out in rashes a lot with certain materials and soaps so were trying to avoid laundry mats. He's our special little man and we love him more than words to imagine. Thank you everyone ! Timmy can't wait to meet some of you! ~ The Millers
So we spoke with Timothy's medical team and he will be able to come home in as little as two weeks !! This is amazing for us . God has awnsered our prayers to heal Timothy enough to come be home with us . We are trying to get his room up and going with trying to find building material donations any little thing helps . His medical equipment and specail chairs and strollers are just a start of a new beginnings for the Miller Family. He has taught us so much in four months that love can fight through anything. Thank you all for every prayer and thoughts !
So were are getting things prepped for Timmy to be able to come home but first we have to built him a room off our living room , and his crib alone is the highest cost because he will need a medical grade one. Thank you for all of your support so far
Timmy needs your help so mommy and daddy can get back to him .
Timmy is doing good from his surgery now its time to heal and hopeful get him home. He will be special needs lil boy but hes a special boy for special parents . Still traveling back and forth to see him . May the lord light our path and guide us in the right direction
Surgery today so far hes been in 3 hrs prayers for lil Timmy
Timmy will be having his second surgery on Friday ! Mommy and daddy wont be there to be with him due to lack of gas, so lots of prayers please
Santa and his head elf came to see Timmy to day !
Merry Christmas to you all from The Millers! Thank you for your donations so far and prayers . God Bless you all
Help are lil man out every penny or even a prayer helps .
Every peny helps ! Looks like we will be spending the Holidays in Portland with lil Timmy. Thanksgiving I will be thankful to have such a blessing in my life as Timmy .
May all the kindness that you so unselfishly give away to others come back to you a Hundred-Fold someday !
Ever peny counts. May want to think about Boston Children s hospital. We still don't know what has cause Timothy's problem with his neurological problems and is low muscle mass. We may get more answer and help down there. Keep up the prayers
Every penny helps with travel , moving expenses and medical supplies Timmy will need for when he will eventually come home .Timmy took well to his feeding tube and hes back to his birth weight. God bless all
Timmy made it through surgery he has a long road ahead of him.
We are trying to raise money to be able to help us to pay our sons medical bills . He was in the NICU at Maine Medical Center in Portland for the first five months of his life . He was born with Micrognathism syndrome which is a underdevolped chin so his tounge is to big for the smaller lower jaw falls back in his throat and hampers his breathingHe also has Arthrogryposis Mutiplex Congenita syndrome which is a rare congenital disorder that is characterized by multiple joint contractures and includes muscle weakness and fibrosis. It is a non-progressive disease. Due to his low muscle tone through out his body he is unable to swallow so he is fed by a mickey-button through his abdominal wall into the stomach.
Without being able to swallow makes his acid reflux and any upper body secretions hard for him to handle at times and we have to suction him or he can choke or aspirate into his lungs and cause phenomena. He has physical therapy daily and splints he has to wear on his legs the straight them so he can sit in a power chair or wheel chair when he gets older.
He still has a long road of healing ahead of him as far as tests, therapy, and other issues . He is a strong little man and fights everyday . He will have very limited mobility But this is our new Normal and we love everyday of it God bless you all . <3 Timothy Joesph Miller <3 We hope to go the AMC conference in July 2-5, 2014 in Minneapolis ,Minnesota to help us learn new and the best ways to take care of Tim and his needs as a special needs kiddo