We are absolutely stunned by the generosity of friends, family, community and even complete strangers. For once I am actually STILL lost for words. Thankyou just doesnt seem enough. This event was put together by some amazing women who are beautiful inside and out and we will be be always grateful to them.
Having a child with special needs can be a lonely and terrifying journey. This event also showed us that we are not alone and that we have the love and support of some truly inspirational people.
We do not not what will happen to Noah. The more the doctors look into his case the more they believe his combination of conditions is unique to him. The only one in the world with his condition. Whilst this brings us despair as we don't know how to help Noah or how long we will be blessed with him in our lives...it also brings us hope for a miracle.
The money means we will be able to provide things for Noah now, things we may have taken years and years to save for...years we simply may not have.
We look forward to putting in some ramps so we can get in and out the house easier, to making him a sensory room so that on the days he's not able to move out of bed he can still enjoy the things around him. Beyond that..the money means we will be able to spend time with Noah. And time as we all know..is all we can ask for.
The amazing gifts that have been given to us too will make our lives so much easier. To be able to clean the foor and sofa...to be able to relax in a haven at the end of the day...We actually cannot wrap our heads around what we have been given...it's just...mind blowing...but we will be spending the next weeks doing what we can to say thankyou. I somehow think one lifetime won't be enough.
For the women at the core of the event who worked so hard...you are in my heart...you always will be . As I can't see the keyboard for tears I will go...but thankyou xxx
Please add Noah on your Facebook to follow his journeywww.facebook.com/noah.barlow.7 and watch your hard work, love and support change the life of our special little man.
With all that we have and everything that we are...thankyou from the bottom of our hearts xxxx
Sunday, 29 July 2012
Thursday, 26 July 2012
Noah's facebook page
Helllooo there! Thankyou for dropping by to check in on Noah. As things get busier here I will be updating this a little less and updated Noah's new facebook page daily. Please feel free to "friend" Noah to be kept in the loop.
Thankyou for all your messages of love and support.
www.facebook.com/noah.barlow.7
Thankyou for all your messages of love and support.
www.facebook.com/noah.barlow.7
Saturday, 23 June 2012
“Are you sitting down?”
“Are you sitting down?” Wasn’t really what I wanted to hear from our Neuro guy Jeremy when he finally got around to talking to us on the phone. Words like high-signal, brain stem damage, unusal, lactate and abnormal swam around my head. Today at 3pm we went in to see him.
They can only give us their best guess at this moment...Mitochondrial Disease. With over 1400 different types it’s hard to get a definiate idea of what is happening.....but with the damage that is evident and high levels of lactic acid in his brain...this is their conclusion. As to what type...well Noah had 5 blood tests today to check for the rarest types, then there will be a lumbar puncture and a visit to the metabolic team to follow. As we don’t know the type he has no one will give us a prognosis.
I asked them right out how long we had with Noah and they simply said we don’t know. The early onset of the illness usually means it progresses quickly but no one can tell us how quickly.
We are beyond devestated. Our hearts are absolutly broken as you can imagine. We want to spend all the time we have with Noah doing everything we can to make him as happy as possible. Thankyou for you kind words and prayers, they really do help us through our darkess days.
Wednesday, 6 June 2012
Noah's MRI
Here we go then....so....on Thursday the pedi opened his phone call with "I just want you to now that even if we had know earlier there wouldn't have been anything we could do" He went to to tell me that they were all shocked my Noah's MRI results. He went on to say that Noah has "significant brain damage" but in a way he has never seen before.
The Myelin (Myelin is an insulating layer that forms around nerves, including those in the brain and spinal cord. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, the impulses slow down) is very badly damaged...but in a localized area. I thought this mean it wasn't so bad...but I was wrong. Noah's Myelin are damaged in his brain stem. There really is no worse place to have brain damage.
Because the brain stem is connected to the spinal cord, the brain stem receives nerve signals, such as touch, sensation, and pain. It regulates the central nervous system. But The brain stem controls many vital functions including breathing, blood pressure, heart function, swallowing, appetite, body temperature and digestion, as well as the need for water, staying awake and sleeping, among other things..
It's not good news..the best we can hope for is a freak something that caused the damage and has now stopped. The neuro team are not hopeful this is the case. We may have to watch Noah get worse and worse until....and there may be nothing we can do.
It's like waiting on death row....Im so angry they didn't listen to me and I am terrified for the future. most days I would just like to pretend it's not happening so I can enjoy my little man like any other mum.
The neuro team are meeting again tomorrow and we should know more this week.
That's all the info I had....I can't answer any questions because I don't know and to be honest it makes me vomit thinking about it..
Thankyou for all your love and support xxx it means more than you could know xxx
The Myelin (Myelin is an insulating layer that forms around nerves, including those in the brain and spinal cord. The purpose of the myelin sheath is to allow impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, the impulses slow down) is very badly damaged...but in a localized area. I thought this mean it wasn't so bad...but I was wrong. Noah's Myelin are damaged in his brain stem. There really is no worse place to have brain damage.
Because the brain stem is connected to the spinal cord, the brain stem receives nerve signals, such as touch, sensation, and pain. It regulates the central nervous system. But The brain stem controls many vital functions including breathing, blood pressure, heart function, swallowing, appetite, body temperature and digestion, as well as the need for water, staying awake and sleeping, among other things..
It's not good news..the best we can hope for is a freak something that caused the damage and has now stopped. The neuro team are not hopeful this is the case. We may have to watch Noah get worse and worse until....and there may be nothing we can do.
It's like waiting on death row....Im so angry they didn't listen to me and I am terrified for the future. most days I would just like to pretend it's not happening so I can enjoy my little man like any other mum.
The neuro team are meeting again tomorrow and we should know more this week.
That's all the info I had....I can't answer any questions because I don't know and to be honest it makes me vomit thinking about it..
Thankyou for all your love and support xxx it means more than you could know xxx
Wednesday, 22 February 2012
A Box Full Of Positivity
Our little sprout is heading to the hospital on Friday to see if they can work out what's going on with him. He's been struggling the last three weeks or so, more so than normal, with some "funny turns" and strange collapsing. We don't want anyone to worry. He's a battler as you know. We just want to get to the bottom of all this and see if we can help him.
I thought about doing this a while ago and I am really kicking myself that I didn't do it sooner...BUT...I am going to make Noah a "Box Full of Positivity" for his room at the hospital and at home. So if you can please help, click on the "Leave a Positive Message" link to the left of this post and write a note, poem. joke, prayer or anything positive for Noah. I hope that your vibes will help him through on the next stage of his tough journey and bring him some more smiles.
Thankyou so much!
Kat and Mark xxx
I thought about doing this a while ago and I am really kicking myself that I didn't do it sooner...BUT...I am going to make Noah a "Box Full of Positivity" for his room at the hospital and at home. So if you can please help, click on the "Leave a Positive Message" link to the left of this post and write a note, poem. joke, prayer or anything positive for Noah. I hope that your vibes will help him through on the next stage of his tough journey and bring him some more smiles.
Thankyou so much!
Kat and Mark xxx
Sunday, 5 February 2012
On the waiting list
We saw Noah's gastro on Monday and talking about his long term plan for Noah. We were pleased that he agreed with us that a PEG is our next option. Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall. The end result looks very confronting for the first 3-6 months as quite a large tube will be sticking out of Noah's tummy whilst it heals. The it will be replaced with a "button" which sounds a lot cuter that it is. The button will be flush to the Skin.
It does mean that we wont have to push the tube up his nose anymore. We hope that this and the fact that the tube isn't in this throat anymore might be the start of his sensory healing in his mouth. In short, we hope he will start to eat! We also hope that due to the fact that the NG tube isn't holding open his tummy anymore that it might help with the vomiting. Noah is still being sick 1-2 times a day, everyday. It's a terrible thing for him to go through and we feel so helpless everytime.
We also talked about a an anti-reflux surgery called a Nissen fundoplication, in which the top of the stomach is wrapped around itself to prevent reflux and vomiting. We have refused this surgery at this time
and hope we wont need it ever. We just want to see what effect the G tube has first.
Unfortunately Noah is booked in the week on his 2nd Birthday for the surgery. This will be his 2nd Birthday in hospital. We were so hoping for some sort of normality for his 2nd birthday. We are hoping for an earlier date through cancellation.
So now we are worrying about the operation itself, especially after Noah's last op left him in the high dependency unit for a week and in hospital for 2. Worrying about how Noah will take to the tube given his sensory processing disorder too. Another thing to work on with the OTs will be preparing him as much as we can.
So that's all folks, at least for this week!
It does mean that we wont have to push the tube up his nose anymore. We hope that this and the fact that the tube isn't in this throat anymore might be the start of his sensory healing in his mouth. In short, we hope he will start to eat! We also hope that due to the fact that the NG tube isn't holding open his tummy anymore that it might help with the vomiting. Noah is still being sick 1-2 times a day, everyday. It's a terrible thing for him to go through and we feel so helpless everytime.
We also talked about a an anti-reflux surgery called a Nissen fundoplication, in which the top of the stomach is wrapped around itself to prevent reflux and vomiting. We have refused this surgery at this time
and hope we wont need it ever. We just want to see what effect the G tube has first.
Unfortunately Noah is booked in the week on his 2nd Birthday for the surgery. This will be his 2nd Birthday in hospital. We were so hoping for some sort of normality for his 2nd birthday. We are hoping for an earlier date through cancellation.
So now we are worrying about the operation itself, especially after Noah's last op left him in the high dependency unit for a week and in hospital for 2. Worrying about how Noah will take to the tube given his sensory processing disorder too. Another thing to work on with the OTs will be preparing him as much as we can.
So that's all folks, at least for this week!
Wednesday, 3 August 2011
So what now?
Noah so far has had FPIES reactions with differing severity from every food we have tried including rice, oats, sweet potato, all fruits, sweetcorn, corn flour, peas, broccoli, zucchini and on and on! He may be ok with carrots...he has tried them but he always had them mixed with something. So from having to call an ambulance because he aspirated on his own vomit in his sleep and was unresponsive to having spots like acne all over him. Throwing up 3-4 times a day is not unusual. The Gastro team at the children's have said to not feed him anything for now so he's on just neonate.
With the fuctose most people find the load they can tolerate. I have already tried Noah on lots of different fruits ( before diagnosis) such as apple, banana, mango, water melon, apricot...all with massive throwing up reactions with skin flare up to go with them. He only ate about 10 teaspoons of food a week at that stage and not all of it was fruit. He was having terrible reactions so I can only conclude that his fructose load tolerance level at this stage is very low. Also when he had his hydrogen breath test he testing very high positive reading very quickly. Who knows...in the future...it may change...but the fructose is usually for life.
The main problem is that most children with FPIES who have had the severity of reactions that Noah has has usually can only tolerate fruit. And there...we have a problem.
So the dietitian team at the childrens really seem stumped. I call everyday and keep being told they are not sure yet but someone will get back to me. His last discharge was weeks ago now. The specialist teams don't remember when or if they had a child before with this severity of FPIES and the fructose...so I guess we will all have to work it out together. Right then...back to the research.
With the fuctose most people find the load they can tolerate. I have already tried Noah on lots of different fruits ( before diagnosis) such as apple, banana, mango, water melon, apricot...all with massive throwing up reactions with skin flare up to go with them. He only ate about 10 teaspoons of food a week at that stage and not all of it was fruit. He was having terrible reactions so I can only conclude that his fructose load tolerance level at this stage is very low. Also when he had his hydrogen breath test he testing very high positive reading very quickly. Who knows...in the future...it may change...but the fructose is usually for life.
The main problem is that most children with FPIES who have had the severity of reactions that Noah has has usually can only tolerate fruit. And there...we have a problem.
So the dietitian team at the childrens really seem stumped. I call everyday and keep being told they are not sure yet but someone will get back to me. His last discharge was weeks ago now. The specialist teams don't remember when or if they had a child before with this severity of FPIES and the fructose...so I guess we will all have to work it out together. Right then...back to the research.
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