Last night wasn’t the best for Alanna as she had 2 seizures and required emergency rescue medication. Luckily it worked and she wanted a chill out morning in bed. The postman turned up with her quilt today which was perfect timing. I showed Alanna her card and as I read it to her her eyes lit up and she signed "I love that". I couldn’t wait to show her the quilt next.
As I opened up the quilt I had to fight the tears back as I was overwhelmed by the beauty and love that had gone into every single stitch. Alanna laid there with her eyes twinkling in amazement and signing and saying in her own way "oh wow I love that quilt".
We looked and felt every single patch individually and asked for all the names and writing to be read to her. Alanna nor I could take it all in because of the beauty and craftsmanship.
Alanna wanted to have her quilt on and immediately snuggled into it. I can’t thank each and everyone of you enough for what you have done for Alanna and for all the other children you do this for. I can’t even see the screen properly as I am so moved by this whole experience so apologies for any spelling errors etc. I’ve included some pictures (please excuse Alanna’s hair as she’s not got up yet from having her seizures yesterday).
Thank you from the bottom of my heart for not only bringing the stars, rainbows, and mermaids to my daughter but for also all the love and happiness that she feels. That alone is priceless and I shall be forever in debt to you all. Xx
My daughter Alanna was born in 2005 weighing 1lb 11ozs. She was a premature baby born at 24 weeks but worse was yet to come. It would also mean I wouldn’t be able to hold my baby even once until Alanna was 6 weeks old and that cuddle lasted for 5 precious minutes.
Alanna never cried or made any sound when she was born as she was simply too tiny. Alanna was whisked away to the scbu and the next time I saw her she was in an incubator surrounded by wires and monitors. She was on a ventilator and the moisture levels in the incubator were set at 98% to try and help her skin.
During the second night Alanna had a massive bleed on the brain. The only thing anyone could do was sit, wait and regularly monitor everything. I wouldn’t leave her side and on day 3 the bleeding had stopped. Now we had to wait and see what damage had been done. It was a huge blow, half her brain (her left side) had been so damaged and died, there was also some slight damage to the right frontal area. On top of all this lines, cannulas, long lines were failing as Alanna’s veins were so tiny. She also had to be under uv lights for over 2 weeks to treat jaundice. My mum and grandads passed away when I was ten years old and I remember talking to them in my head asking for their help to get Alanna through all this because I knew we needed more than a miracle at this point. I still think to this day they helped to watch over her.
We lived in the hospital for the next few months. Alanna’s weight had dropped down to 690 grams. We battled getting Alanna off the ventilator onto cpap, she would do it but tired so easily so it was back on the ventilator. Any little infection Alanna seemed to pick up really took its toll on her but she never gave up fighting. Alanna also had laser eye surgery on both eyes. She also needed a PDA duct in her heart closing but we was being referred to a children’s specialist hospital for that.
Finally we got home. Alanna had not only come off the ventilator and cpap she had also managed to come off oxygen. She had to sleep in something special as she couldn’t lay flat as her Sats would drop too low. Life was strangely quiet when we got home and took a while to adjust to. Alanna had to be gravity fed every two hours day and night through a NG tube because she couldn’t tolerate normal sized feeds. I was very tired and soon learned to cat nap when I could. Alanna was also diagnosed with epilepsy.
Over the next few years Alanna has faced many challenges in her short life. All the surgeries include heart surgery, corrective surgery for scoliosis of the spine, hip surgery, mini button being fitted, laser eye surgery and Botox. She’s never once complained.
Alanna uses Makaton and has even made up some of her own signs as she can’t use both hands. She also started to say words when she was around 11 and half years old.
Alanna’s such a kind, caring, loving and beautiful young lady. She views the world through such innocent and happy eyes. She loves her younger sister to the stars and back. Best of all she’s my special girl.