Ivy-Mays Life Journey

Ivy-Mays Life Journey We have decided to make Ivy May a special page of her journey and progress through life οΏ½

Strawberry, picking with Nana and auntie Jess today πŸ“πŸ“πŸ“
15/07/2023

Strawberry, picking with Nana and auntie Jess today πŸ“πŸ“πŸ“

Before we left for holiday we had an appontment at gosh for the long awaited results of Ivys MRI in Feb.Ivy had this MRI...
08/07/2023

Before we left for holiday we had an appontment at gosh for the long awaited results of Ivys MRI in Feb.

Ivy had this MRI because her back had a strange lump/shape along her spine and also physio referred her because her movements when grabbing something were jittery and not as smooth as they should have been so they wanted to look at her brain for any damage to
Cause this.

We left with the best news because neurodisability discharged her πŸŽ‰πŸŽ‰

Her spine showed normal and her brain also showed no sign of any problem for them to worry about also her movements are now classed as normal

She is still under Physio locally as she is hypermobile ( very bendy in the simplest form )
Which will slow her down from walking etc but with build up of strength on her bones we will get there οΏΌ

Ivy has had the best week away on her cruise and made good use of the all inclusive ice cream lol

Lots of appointments coming up over the next month so we will keep you all updated οΏΌπŸ’—

Sadly we didnt get the results we had hoped for.Ivy needs an mri and biopsy on the growth they have found on her liver. ...
08/06/2023

Sadly we didnt get the results we had hoped for.
Ivy needs an mri and biopsy on the growth they have found on her liver.

On the plus side the bloods tests that change if any cancer is positive have come back negative so we are waiting on the results of the tests now.

We do not have a date yet but in the meantime we are taking ivy may on her first holiday back to my family home Cyprus on Tuesday. We cant wait for her uncle jay to finally meet her πŸ₯°

Here she is testing out her hat for the beach 😍πŸ₯°

We don’t have much of an update yet as we are waiting to hear from the doctor, but Ivy-May visited Kings hospital on Fri...
30/05/2023

We don’t have much of an update yet as we are waiting to hear from the doctor, but Ivy-May visited Kings hospital on Friday to see how her liver is doing.
οΏΌοΏΌ
Ivys liver caused her to be severely jaundice at birth due to a blockage. The specialists have told us that this is all part of her genetic condition. She has a check up every six months which involves bloods and an ultrasound scan.

Last time we went, the news wasn’t so great. We are hoping for a better outcome this time.
We will keep you all updated once we hear back from the doctor with the results πŸ’•πŸ’•

How tall is she getting πŸ₯²πŸ˜

Third and final appointment at Gosh this month completed.First one was to review ivys peg as it had been fitted almost 2...
18/05/2023

Third and final appointment at Gosh this month completed.

First one was to review ivys peg as it had been fitted almost 2 years ago they want to change it in june.

Second one was with the endocrine team for her sugars along with the dietitian as she is loosing some weight!
Sugars are all happy we will be going in for another fast soon to see if we can drop her overnight feed. The dietitian is keeping a close eye on her weightloss.

Even tho ivy is peg fed she is having 3 puree meals a day now orally which is amazing news, and also having dairy which she couldnt before.

Lastly a bit of bad news which is expected as we always are so lucky with her.

Ivy had a small hole in a valve leading to her heart which they hoped would have closed by now so she will require surgery for this as the heart is pumping too much blood into the lungs instead of round the body. - this isnt effecting her at the moment and they are hoping we can hold out on surgery until she is big enough for it to be keyhole, we are waiting for the consultants to discuss.

For the first time in a long time i cried after our visit today i feel so lucky our little girl is with us and fighting but she is such a happy little girl she doesnt deserve all of this breaks my beart to hear it and what she has to go through πŸ˜”πŸ’”

Shes a little fighter thats for sure! πŸ’•

Next stop kings hospital for her liver next week!

22/03/2023

I know to some this videowill look messy and gross but for us it’s everything.

Finally, Ivy May is eating spoonfuls of purΓ©e. We still have a really long road ahead of us, but this is just the start.

She is so amazing πŸ’•

Please if you could share πŸ’–
27/02/2023

Please if you could share πŸ’–

We would like to thank The Curlew for all of the funds they have raised for Great ormand street.Us as a family and the c...
27/02/2023

We would like to thank The Curlew for all of the funds they have raised for Great ormand street.

Us as a family and the charity are eternally greatful.

Thank you

We would like to thank The Dog & Partridge for all of the funds they have raised for Great ormand street.Us as a family ...
27/02/2023

We would like to thank The Dog & Partridge for all of the funds they have raised for Great ormand street.

Us as a family and the charity are eternally greatful.

Thank you

What a week!Renal- kidneys all good no medication/ supplement required at the moment.Feeds- gone to 6 hourly at a reduce...
22/02/2023

What a week!

Renal- kidneys all good no medication/ supplement required at the moment.

Feeds- gone to 6 hourly at a reduced rate so she is more hungry to eat orally.

Fast- an amazing 9 hours and even brought herself back into range so could have gone longer!
Also discovered ivy is producing her own ketones when hypo which is great news for protecting her brain when she has a low blood sugar.

Physio- extremally happy with her progress

Mri- anaesthetic went well we are waiting on results. The mri was for her brain and spine.

She is in recovery now and aslong as she tolerates her next feed we will be home later tonight

She has breezed this week and been such a good girl considering how much she has had done we are so proud of her as always πŸ’•

Home for the next 4 days πŸ’–
19/02/2023

Home for the next 4 days πŸ’–

And we are back after months of being so well we almost managed a whole winter without admisison!Ivy has an infected peg...
23/01/2023

And we are back after months of being so well we almost managed a whole winter without admisison!

Ivy has an infected peg site which is causing her to not tolerate her feeds which of course is dangerous for her blood sugars dropping.

We had a very busy week planned with audiology today and two nights at gosh to see the renal doctor have an mri and then do another fasting but likely that will all be on hold now!

Southend started ivy on antibitoics last night orally but she still is being sick after every feed so waiting for the doctor to confirm if they will carry on or if she requires iv antibiotics.

Ivy is growing stronger she is very happy in herself despite everything which is the main thing πŸ’–

We will keep you all updated with her progress πŸ’•πŸ’•

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80 Gandalfs Ride
Woodham Ferrers
CM35WS

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