Welcome Speech
We would like to welcome
everyone to an Elegant Evening for Anna: dinner & auction. Thank you
all for coming to show your support to Ryan, Lorissa and their family.
Back in 2008 many of us came together to witness Ryan and Lorissa’s wedding.
We heard them promise to be true in good days and bad, in richer and
poorer. Now today we are together again to help them in their vows to
each other and the Lord. God, in His infinite wisdom gave to Ryan and
Lorissa a very special girl, and through Anna we see His working in all our
lives. The outpouring of help, prayers, gifts, and food has been
phenomenal. Words seem insufficient to express how very thankful we are
for this. Communion is an expression of the Lord’s work in our life and
it is through the Lord’s words in Matthew 6 that we know this- Therefore do not
be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient
for the day is its own trouble. Many people who live with a child with
special needs tell us not to look too far down the road, to take one day at a
time.
When we (Ryan, Lorissa,
Tracy, Debra, Michelle & myself) started with our Trach training, in order
to bring Anna home, it became very evident to us that Ryan and Lorissa would
need some financial help over and above what they will receive from OHIP or
private insurance. We then started brainstorming about doing a
dinner. Through a lot of work and by our greater community support, this
evening quickly became a reality. We asked Candice VanLeeuwen to be our
“chef” for the evening. Candice does not want to be called out of the
kitchen for a “formal thank you” so if you see her (she’s super tall (compared
to me), with long hair, make sure you thank her for all the work she and her
kitchen crew have done to help make this dinner possible. The proceeds of
this dinner will be devoted to Anna’s care both now and in the future. It
is impossible to say how much Anna is going to need as she grows, however, one
thing is possible. Ryan and Lorissa do not need to worry. The love and
care that is shown to them tonight is proof of that. We thank the Lord
that he has brought us all here to show by word and deed the Love that He first
showed us.
What is all needed for Anna
& the family? Anna’s world needs to be made as germ free as
possible. The old drafty window in her room has to be replaced.
Dusty carpet removed and wood flooring installed. Shelves & cupboards
need to be installed to hold all of Anna’s supplies; Airvo unit for Anna’s
teach needs to be purchased; A Travel “go bag” assembled that they need for any
trips; Trach and G-Tube supplies. A special fortifier for her food has to
be added with each feed. And the list goes on and on…
After some discussion with
Ryan and Lorissa, it was decided to move up the reno of their kitchen. The original
kitchen was very small with very limited counter space and no dishwasher.
As Anna’s health is of vital importance it was decided that the change should
happen prior to her coming home with all the dust and dirt that would happen
when renovating. This renovation is now complete due to the tireless
help of so many people.
Anna’s arrival home has
been delayed, which was a huge disappointment to us all, but it is our prayer
that we may have an enjoyable evening together, show Ryan and Lorissa our
support and join in prayer for them and Anna.
After Anko opens with us the
dinner will be served family style beginning with a salad; after that the main
course which will be butter chicken, beef korma served with rice and naan bread.
Once the dinner is done dessert will be on the buffet tables with a choice of
pavlova or mocha cake. During dessert there will be a short
powerpoint presentation. Following
dessert the auction will begin. Again, we thank you all for coming.
Video about Anna
Speech about Anna
What exactly is Cri du Chat and what does it mean for Anna and the
family? Another name for Cri du Chat is
Cry of the Cat or 5p -. The 5th
chromosome is shaped like a P. With Cri
du chat the short arm of the chromosome has sections missing. With Anna she has about 30 of the 48 sections
missing. What all does this mean to Anna
and her future is somewhat unknown. The
most common way that cri du chat is diagnosed at birth is the babies cry. Their cry sounds like a cat. With Anna the diagnosis was delayed because
Anna doesn’t vocalize. Her vocal cords
are not paralyzed but she never made noise.
Anna has many doctors & specialists that she will need to see
because of her syndrome.
●
Feeding
○
G-tube
■
Feeds require a pump and other equipment.
■
Uses very expensive fortifier (neocate) which is covered by
drug card
○
She does not swallow well so for now all her feeds are
through g-tube. We continue to do just drops on her tongue to ensure she
doesn't get oral aversion.
●
Trach (ENT - Ears, Nose, Throat)
○
Special training to know how to take care of it
○
Has posterior Tracheal-malatia
○
For most of her day she will be hooked up to a heated mist
humidifier or Airvo unit. This unit is
not covered by OHIP, ADP, CCAC, or private insurance. ADP will only cover a cold air humidifier but the doctors and
specialist do not recommend this at all.
The hospital doesn’t even use cold air.
This air goes directly into the trach and down into her lungs. For trach babies they need to stay as healthy
as humanly possible so to have the air going into their lungs at body
temperature is the most optimal.
●
Tethered Spinal Cord (Neurology)
○
Will require surgery to untether her spinal cord at a later
date
●
Patent Ductus Arteriosus (PDA) and Persistant Pulmonary
Hypertension of the Newborn (PPHN) (Cardiology)
○
Will require surgery to close her PDA at some point. Trying
to avoid until she is bigger so there are more options that are less invasive.
She is on a couple of medications to try control the shunting of blood through
this duct. (Since the Dinner this surgery has been done and was successful)
○
Anna’s PPHN comes and goes with sickness, stress, surgery.
It may flair up at any time so we always need to be watching for the symptoms
of it.
●
Hypo-Pigmented Fundi (Ophthalmology)
○
Means her vision is not perfect and that she is a little
more sensitive to bright light.
●
Severe Bilateral Hip Dysplasia (Orthopaedics)
○
Both of her hips are very dislocated.
○
She may require surgery and a body cast or brace for a few months.
○
It is possible they will leave them displaced because if
they try to fix it and the hips doesn’t locate properly it can cause a lot of
discomfort or pain
○
Her ureter tube is mostly blocked by the entrance of her
left kidney
○
They are just monitoring it for now but they may shunt it
at some point.
●
Inguinal Hernia (General Surgery)
o
This will be fixed in conjunction w/ another surgery (Done
with the PDA Ligation!)
When we get home Anna will be visited at our home by the following:
●
Nurse - we will qualify for around 40 hours a week
●
RT (respiratory therapist)
●
OT (occupational therapist)
●
PT (physical therapist)
●
Dietician
and eventually a ST (Speech Therapist)
We will also have clinic appointments for all of the above departments
at McMaster (as well as complex care team and growth & development clinic)
plus appointments with her paediatrician in Guelph.
There are many things we don’t know with Anna - will she walk? will she
talk? will she always need the Trach? will she be able to eat by mouth? and the
list goes on and on. With cri-du-chat we will always be struggling with her
growth and development. Every small accomplishment we will celebrate! When she
can hold her head up herself, sit up, etc. All these little accomplishments
will require hours of practice and often special equipment.Through all of these questions - we keep returning to our heavenly Father who knows all the plans he has for us and our little Anna.
We are so appreciative of the organizers of this event! It was alot of work - in such a short amount of time and it went of without any hiccups. I'm sure it is safe to say that everyone enjoyed Nello, the auctioneer! He did such an amazing job and kept us laughing the whole way through! We are so completely overwhelmed and thankful to report that this event, along with donations, has raised $17,000 to help us care for Anna. This allows us to get anything that we need for Anna presently and on-going regular supplies she uses, but also to plan for the future. Some examples of equipment Anna may need in the future include - standing frame, gait trainer, wheelchair. We aren't sure what the future may hold, but it is so wonderful to know that we do not need to worry about price tags! This amount totally blew us away - and just shows that already the plan our Heavenly Father has for Anna. Through her - he brought so many of us together to celebrate and support her life.
As for the rich in this present age, charge them not to be haughty, nor to set their hopes on the uncertainty of riches, but on God, who richly provides us with everything to enjoy. They are to do good, to be rich in good works, to be generous and ready to share, thus storing up treasure for themselves as a good foundation for the future, so that they may take hold of that which is truly life. 1 Timothy 6:17-19
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