Milly Lopez

2009-11-17T20:57:00.000-08:00

Great news Millys friends!!

She has finally reached 12kg's and we have started taking her on small trips in the car and she loves them...

We have had many of loved one's children in hospital over the past few weeks but iam glad to report they are better now..

I have been thinking as my daughter continues to get better about the dreams i once had for Milly, when finding out i was pregnant all i wished for was a girl (as i already have a boy) not knowing that i should of been wishing for a healthy baby, i used to always think about doing her hair and putting ribbons in,picking pretty dresses, putting her in dancing and playing with dolls and prams and my old Barbies my mum had keep for my daughter.

These have now become distant memorys i now wish for health and safety, Milly continues to do well and i can now do one of my dreams = she has longer enough hair for me to put in pig tails and hair clips YEs i know it is a strange thing to get excited about but this is my life

VERY LATE UPDATE>>

2009-10-26T18:24:00.000-07:00

HI

As you can tell it has been 5 weeks since my last post SORRY i had many things on and have found time today to update....

Since the last post we have taken Milly for a walk to pick her brother up from school he was very shocked to see us with Milly, she did very well and loved the bumpy ride .

Milly is just now overcoming a chest infection that has made her unwell for 2 weeks, she was started on a weeks worth of Anti-biotics and small doses of nurofen for the pain and temps, she is now recovered and playing with her toys again..

It is the week of her dad-dads birthday this week and she would like to WISH him a very Happy Birthday...

I will try my best to update soon... and hopefully with a new video montage of Milly

Thank you

2009-09-20T01:46:00.000-07:00

Today Millys dad took her for a short walk down the road, Even though it was a short walk he had to still take the Oxygen tank with him even though i insisted he take the suction machine he didnt.. Iam unsure if i felt anxious because i could not see her or because if something happened i was not there to help her, he was gone maybe 5 minutes before i returned back to the house from the driveway and got the house keys and walked to the corner so i could see them Milly was fine she was with her dad but i couldnt help but think of OTHER things happening

I have been saying for awhile now i should start taking her for small walks but with todays small walk down the road it made me realise im not ready.. Why???? the feeling when your child is not breathing and requires more equipment then what you have packed and squished into a pram is not good i have had this happen to me and wish never to relive these moments again.

It is the same feeling i got when we had our first black out with Milly at home luckily my sister in law was with me this time after a couple of minutes of no power Milly became unsettled and required the use of her medical equipment which only 3 of the 6 machines work with out power they went flat after 1 hour,after that event i purchased new equipment that now last 13 hours with no power and we now hire a oxygen tank for emergencys and plenty of torches for every room in the house.... the feeling of not having the medical equipment you need to help your child is beyond words Unsure what she may do or may need..

2009-09-08T21:07:00.001-07:00

Hello

AGAIN iam late to update have been very busy with both of my kids birthdays last week and both birthday party on the same weekend--Yes crazy i know----

Brandyn had a great birthday he decided to have Indian food for his birthday dinner he loves his butter chicken and Naan bread, he recieved his presents and had his birthday cake and took this to school for his class mates...

Milly had a party with LOTS of people everybody got to see Milly play in her cot and then have her first bath of the night once the kitchen was cleaned we sang Happy birthday and placed sparklers in the cupcake tower(see photo) during this Milly stole one of the chocolate cupcake and proceeded to put this in her mouth SHE LOVED IT and made a huge mess but it was lotsof fun she had chocolate everywere but was worth the 2nd bath for the night..

Id like to Thank those people who helped with the big day that being Aunty Sherree with helping me make the cupcakes for Milly for many hours and Kaz and Aunty Simone for helping with the tidying up and of course Michael (Millys dad) for being the Master chef that he is cooking all the food it was very nice..

And to the guests who came and celebrated this day with us and for all the beautifull clothes Milly recieved....XOXOXOOXO

HAPPY BIRTHDAY MILLY

2009-08-31T18:25:00.000-07:00

As you can see iam a bit late with the update post SORRY..

Milly's birthday was fantastic she was very spoilt and recieved heaps of toys, we also had a birthday cake for Milly with 3 sparklers for every year she has been here with us.

We are now getting ready for Millys big brother birthday tomorrow he will be 10 and then getting more things ready for both there partys this weekend Milly is having a Family dinner with LOTS of kids and food and Brandyn is having a roller skate party--this i have not done for MANY MANY years-----

Thank you

Millys birthday...

2009-08-29T05:58:00.000-07:00

We are just under a hour untill Millys birthday day...YAY

Milly will be 3 today...

I have spent the past couple of hours decorating her cot with balloons and streamers and a HAPPY BIRTHDAY banner

I will update again tomorrow night to let supporters know how she went on her big day...

So a quick message to Milly for her big day...

Happy Birthday Milly
You were heaven sent and i love you

Have a great day

Love always Mummy
xoxoxooxoxoxoxox

2009-08-25T04:08:00.001-07:00

Yesterday i trained a new nurse to help with the care of Milly and today she did her first shift as my son had his sports carnival..(he came third in 2 different events)

A typical training session takes 2 hours it includes showing them Millys equipment,files and where certain items are kept and the rest of the session is alot of Q&A...

Milly responded well to the new nurse and tryed her luck by asking for LOTS of sugar from a new person who could not resist giving it to her

We are now 5 days away from my baby girl turning 3 and my big boy turning turning 10 3 days later ---very busy week ahead---

It has been a very long but worthwhile 3 years Milly continues to smile and be happy everyday(unless sick) and my son the bravest and best big brother Milly could have he loves his sister for who she is..

A baby asked God poem..

2009-08-22T01:20:00.000-07:00

A Baby asked God...

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"

"Your angel will be waiting for you and will take care of you."The child further inquired, "But tell me, here in heaven I don’t have to do anything but sing and smile to be happy."God said, "Your angel will sing for you and will also smile for you.

And you will feel your angel’s love and be very happy."Again the child asked, "And how am I going to be able to understand When people talk to me if I don’t know the language?"God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?"God said, "Your angel will defend you even if it means risking it’s life.""But I will always be sad because I will not see you anymore."God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel’s name."

"You will simply call her, ‘Mummy’."

Author: Unknown

2009-08-20T16:04:00.000-07:00

Admission to hospital

2009-08-20T00:37:00.000-07:00

Hi

As most people were aware Milly has just come home from another hospital admission, she was initally treated with a throat infection but after not getting any better it was decided she must be admitted to Nepean hospital here she diagnosed with " suspected CCF (Congested Cadiac Failure)" here i was asked AGAIN if Milly was to stop breathing what were my wishes-- Like always and always will be my same answer-- You must give all medical treatment needed and if Milly wants to respond she will.... BUT this Dr continued to go on about the QUALITY of life for Milly and that they dont have agreat sucess rate of CPR and that she could be brain damaged if they do manage to get her back with my response being "nobody gave her a quality of life the day she was born i gave her the quality of life she has had for the past 3 years.( i think the doctor got the hint with my response).

Milly was transfered to Kids Hospital at Westmead via NETS and was taken into Resus were we remained for approx 4 hours here AGAIN i was asked about my wishes for Milly if she went into Cardiac Arrest and i gave the same response as i always do, eventually we were sent to the VAriety ward for the night when waking in the morningMilly had been coughing up blood Dr was paged and reviewed Milly and asked that the ENT(ears,nose throat Dr) came and review her int he day---This never happened---

Once Transfered to Hunter Baillie ward i AGAIN was asked the same stupid Question(iam sure you know the answer now Pitty the doctor's dnt) here Milly continued to remain on her CPAP machine 24 hours a day on a pressure of 12 untill the ICU(Intensive Care Until) Team came to review her, here he decided Milly needed more support then her home machine could give and her provided her with a Bi-PAP machine which gives more pressure and if this didnt work "she would win herself a bed in ICU" a quote form the ICU team,Milly took to this machine and she was starting to breathe slowly and required less oxygen ---YAY--.

After a couple of days she finally had her Echo done(a scan of her heart) here the Cardioligist said there was nothing wrong with her heart and there is no fluid around the heart as suspected and her liver is okay Quoting the man"her heart is fantastic compared to what they(dr) told me to expect) the weight on my shoulder had been lifted that very moment knowing he heart was good and not the problem of this admission BUT WHAT WAS???

I straight away asked the treating Dr what know and she answered with "it must be a virus and she will get over it soon"

Milly started to show signs of getting better soon after and she started to interact more with me her dad and Brother..

The respiratory team came to see Milly and decided she needed to remain on the Bi-PAP machine and she would have to take this home--here came the fight with the hospital dr and respiratory team --..

Problem's

1.. No machines to hire or to get from PADP
2. Another 8 kids waiting in the hospital for machines to go home with
3. Dr not reading Millys file and trying to discharge her to another hospital WITHOUT a machine

After 5 days of Milly being well and ready for discharge home i asked to speak to another Dr in regards to why she could not go home with the machine she had with her currently i was advised this was hospital stock and she couldnt take it--- Now common sense would say what i said to them if Milly was using it now they could not use this machine for another patient and this was true so after another night of sitting in a single room wasting time waiting for a machine i informed them if they did not get her a machine TODAY that i would take the machine she currently had and leave and SURPRISE SURPRISE a machine turned up.... and i took Milly home

She is doing well is still on BI-PAP and sleeping better then she ever has before so that means im sleeping aswell YAY

I would like to thank my Family and friends for all the support and wishes for Milly while we were in hospital again.....

A quick blog to start

2009-08-19T22:45:00.000-07:00

My daughter Milliarn (Milly) was born 30th August 2006 8 weeks and 3 days early..

From the time Milly was born she was not expected to live today as i write this post she is just shy of turning 3 and even though she is not a well baby she is my baby.

Milly has had a very tuff start to life but with her strong determination and fighting spirit she has done things Dr's and most people assumed she should not do.

To go back to the start of Milly's life would only be a history of bad experinces i prefer not to relive, though i do encourage people to check out her website for a video montage of her life from the time she was born WWW.milliarnlopez.com

With this blog i hope to update all of Millys supporters with weekly news of What she has been upto and what it is like to be me, Mummy to a disabled child with a very rare condition through my eyes...Please leave comments or questions for me and i will try my very best to respond other wise i may be contacted by email millysmum@optusnet.com.au