4 months on….. 21 months old (18 corrected)

So this is the third time I have started writing this blog… Not because I don’t want to share but because there is so much and happening and changing everyday. It was almost easier blogging daily, I didn’t have so much time to think about what I was writing.

Ellie is finally wireless during the day. She is an incredibly active little girl who is loving her freedom. She is climbing and crawling and even taking some steps. She is eating and drinking well. She still amazes her old NICU doctors and nurses who managed to get her through two bouts of sepsis, pneumonia and more resuscitations than anyone would like to count. At night she is on CPAP and needs to be reviewed to see if having her tonsils and adenoids removed will help her breath better while she is sleeping.

Two active one years olds, a 4yo and 7yo plus the appointments is BUSY.  We currently still see 3 specialist and will add another next year (two of those are shared between both the girls), Physio will be stopping but Occupational Therapy will continue as will weekly early intervention sessions. It’s easy to get caught up and dragged down in the difficulties and challenges of having young kids. People who spend 10-30mins with Ellie are amazed and in awe of her progress. People that spend a few hours with Ellie realise just how active and how utterly cheeky she is!

This time of year seems to being drawing more people to the miracle that Ellie is. I’m not sure if they are remembering that she was still in hospital last year or if it is just the season to search for hope. The more time that passes the better Ellie gets and the more I am coming to realise how much of a miracle she really is. Not just for surviving but for thriving. She is incredibly happy, she loves her new physical capabilities and expresses this through knocking down anything that is up right including the kids wooden chairs. She is clever and learning new things everyday, she still becomes stressed in the hospital and expects all procedures to hurt (it took a full 10 mins for her to realise the follow-up ultrasound she was having wasn’t going to involve pain (she started falling asleep after that). I can see the stark difference in her compare to Hannah. When I use to take them in to the kids hospital for their monthly RSV immunisations through winter Hannah would happily lie down and smile at all the nurse until the point the needle came in. Ellie saw two nurse and me – we would start to lie her down and she knew something was about to happen. There are still some doctors she is very compliant for when they want to listen to her chest and some that she screams at as soon as they get near her. Despite all of this and 12 months in hospital she is incredible happy and well adjusted. She causes just (if not more) trouble than the other kids. She pulls the boys hair (really hard sometimes) steals the other kids food and throws their plates on the ground. She is very enthusiastic about life.

Hannah had tonsillitis last week and rarely wanted to leave my side – it’s been a challenging week to remember what amazing miracles my daughters actually are. Then while driving in the car I heard the song Hall of Fame by Script and it reminded me that as challenging as Ellie’s climbing and energy levels are maybe it can show people that anything is achievable. People didn’t expect Ellie to live let alone be taking steps by 18 months of age (corrected). Determined is to subtle a word for Ellie, I hope her ability to constantly exceed people’s expectations helps someone else to not give up on their goals.

Another reason it has taken so long to write is because I wanted it to be extraordinary. I know Ellie existence is amazing but it doesn’t feel extraordinary when there are crackers all over the floor, a baby covered in hives on my lap (Hannah’s allergic reaction to her tonsillitis antibiotics) and general chaos. I know at this point my Aunty Julia will be reminding me I longed for a time when I could be at home exhausted with my 4 kids around me causing chaos. So my dreams have come true and let me tell you they are exhausting!

So rather than something extraordinary I will leave you with a project I am working on. I want to put together some blessing bags for Mums with kids in hospital. They will include a small bag, pen, notepad, tissues, chocolate, lip gloss and good quality hand moisturiser. All things I used and would have appreciated receiving. I’m going to ask people to sponsor a bag or part of a bag (bags are $25) so that I can put them together in January and give them to my social worker at the hospital to distribute. I’m hoping I can do this every year as a way to remember all the support and help I received during Ellie’s long hospital stay. If you would like to contribute to a bag please send me an email and I’ll give you more details

mattdebnate@gmail.com

We are so excited to be celebrating our first Christmas at home together (although we will miss the Wiggles and our amazing nurse friends).

We wish you all a happy and healthy Christmas. Thank you for all your love, support and prayers over the last 21 months.

*Deb

***I forgot to add the “swimming” cap is an especially designed hat to keep Ellie’s hearing aides in. She has partially damaged one hearing aideby chewing on it and thrown the other out of the car (it is being replaced today).

Ellie is wearing a backpack to hold all the wires that are attached to her during her sleep studies. She has had 2 so far and has another book in for March next year.

The giraffe CPAP that Ellie has to wear every night to bed.

Just before her oxygen came off.

“Helping” with the washing.

Boxes are fun! They are also showing off their considerable size difference.

Her first ever ride and she loved it. That beautiful smile stayed on her face the whole time.

Hannah is seeming very grown-up these days and thinks she is 4.

Hannah was sick and sleeping on me. I heard a funny noise and asked Levi to take a photo of Ellie, she was pulling everything out of the nappy bag and spreading it as far as possible.

When we first got Ellie’s hat Hannah wanted to have a turn too. They both wore them all day, including to the shops.

I was trying to get a picture of them in their “skirts”, they never stop moving!

One very proud little girl who climbed up all by herself.

Ellie is very excited that she now gets to go to Nate’s school assemblies.