The masks I ordered online have arrived.
The closest fit is an Extra Large nasal mask called Whisper Soft.
17 June 2014
Whisper Soft Mask
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However it is far from "whisper soft". It has high leakage and Beth who sleeps with Vera is finding it hard to rest with the hissing sound all night. Even then, it is not going to fit for long and there is no next size up.
Our Trisomy 18 journey
Labels
- celebrating milestones
- Daen
- early intervention
- Falling Sick
- family n friends
- fatherhood
- feeding therapy
- Grief
- hospital stay
- Medical: ENT
- Medical: Eye
- Medical: GI
- Medical: Heart
- Medical: Neuro
- Medical: Renal
- Medical: Respiratory
- Medical: Skin
- Medical: Spine
- motherhood
- motor development
- Orthotics
- outings
- philosophical
- physical development
- physiotherapy
- special needs
- Special Songs
- trisomy 18
- tube feeding
"A simple child, that lightly draws its breath, and feels its life in every limb,
What should it know of death?"
- William Wordsworth
Do It Anyway
If my child cannot see,
I'll smile at her anyway.
If my child cannot hear,
I'll sing to her anyway.
If my child cannot understand,
I'll explain to her anyway.
If my child cannot hug me,
I'll cuddle her anyway.
If my child cannot call me mummy,
I'll be her mother anyway.
If my child should leave one day,
She'll be with me anyway.
- May
I'll smile at her anyway.
If my child cannot hear,
I'll sing to her anyway.
If my child cannot understand,
I'll explain to her anyway.
If my child cannot hug me,
I'll cuddle her anyway.
If my child cannot call me mummy,
I'll be her mother anyway.
If my child should leave one day,
She'll be with me anyway.
- May
Life Lessons
Without weakness,
how do we find strength?
Without darkness,
how do we see the light?
Without sorrow,
how do we savour joy?
Without silence,
how do we learn to listen?
Without fear,
how do we learn to be brave?
Without death,
how do we treasure life?
Without loss,
how would we know what we have gained?
- May
In a Nutshell
Vera was born small at full-term via elective Caesarean at 1.9kg. She was diagnosed shortly after with a rare genetic disorder - Trisomy 18. This feisty girl is among the rare 10% of T18 infants who survive beyond their first birthday. Despite her medical issues, she continues to thrive with the excellent care from her medical team and those who love her. She enriches our lives, just by being alive. Vera is 100% tube-fed and only requires biPAP machine support during sleep.
Blog Archive
What is Trisomy 18?
A rare genetic disorder that occurs in 1 out of 3000 live births. Of the 50% of babies who make it to birth, 95% do not make it past their first year. Those who do are considered survivors. Despite severe mental, physical and speech development delays and various medical issues, communicating is possible with these children. They respond to loved ones non-verbally and are miracles of life in their own right.
MEDICAL MIRACLES
1. Vera was born with a large PDA (13mm) which wasn't expected to close. It became a small one at 3 months and closed on its own at 6 months.
2. At birth, scans showed a duplex kidney and cyst. Subsequent scans showed kidneys to be normal.
3. Vera was born with hazy corneas, a film covering both eyes. They have cleared significantly on their own, and her sight has improved.
4. Vera is expected to "fail to thrive". Fed on the PEG, she is currently overweight on the Trisomy 18 growth chart.
5. Vera has little hearing in her left ear, and moderate hearing in her right ear. Yet she enjoys music, singing and listening to people talking.
6. Vera has Obstructive Sleep Apnea. With respiratory support from a biPAP machine, it is well managed.
2. At birth, scans showed a duplex kidney and cyst. Subsequent scans showed kidneys to be normal.
3. Vera was born with hazy corneas, a film covering both eyes. They have cleared significantly on their own, and her sight has improved.
4. Vera is expected to "fail to thrive". Fed on the PEG, she is currently overweight on the Trisomy 18 growth chart.
5. Vera has little hearing in her left ear, and moderate hearing in her right ear. Yet she enjoys music, singing and listening to people talking.
6. Vera has Obstructive Sleep Apnea. With respiratory support from a biPAP machine, it is well managed.
7. Vera had seizures (myoclonic jerks). With seizure medication, it is being well controlled.
Inspiration
Fight ignorance with knowledge
Fight bitterness with joy
Fight sorrow with love.
Fight bitterness with joy
Fight sorrow with love.
Life is Life
"Life is an opportunity,
benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it."
- Mother Teresa
benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it."
- Mother Teresa
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1 comments:
That is a problem for Annabel. The air leaks into her eyes and she has scaring from this already. At this point was are just on oxygen.
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