Psalm 139:13 This is the day the LORD has made. We will rejoice and be glad in it.
Today is Alegria's 1st birthday! It has been an amazing and challenging year, but she is certainly worth it! She is such a delight and a blessing! There were certainly times over the past 12 months we wondered if we would make it to this point, and we are so thankful that Alegria is still here with us and doing so well too!
Last Saturday we joined with our church, family, and friends to celebrate and praise God for the wonderful time He has given us with Ali thus far! It was such a wonderful time. For those of you who weren't able to join us, I thought I would share a fact sheet I put together about Alegria, trisomy 13, and the trials and joys we have faced this past year...
Alegria Elizabeth Pool
born February 9th, 2009
weight 6 lbs 7 oz
Psalm 139:14 I will praise thee;
for I am fearfully and wonderfully made:
marvellous are thy works; and that my soul knoweth right well.
marvellous are thy works; and that my soul knoweth right well.
FACTS about Ali
She loves to laugh, coo, and smile!
She loves to put EVERYTHING in her mouth!
She also loves to look at lights.
She finds the light from mommy's cellphone a very interesting distraction in the middle of the night.
She enjoys cuddling with her brothers and sisters.
She likes to suck her thumb and her feeding tube.
She enjoys the shower.
She has 5 (now 6) teeth.
She likes playing with both her hair and anyone else's she can grab hold of.
Alegria is a blessing and a joy to our family!
Medical FACTS about Alegria
On 5/5/09 at almost 3 months old, we learned she had Trisomy 13.
Alegria is primarily fed breast milk through her g-tube which is a small port directly into her stomach.
She is very sensitive to the foods I eat.
She has battled major reflux on and off for the first 5 months of her life.
She has stopped breathing 5 times this year and has needed resuscitation each time.
Once she needed an ambulance and full CPR
Twice were complications after surgery in the hospital.
Twice were at home complications of severe reflux episodes.
The last time she has needed the Ambu bag was 7/24/09.
She has undergone anesthesia 3 times already.
She has spent 9 days in the NICU and 11 days in the PICU thus far.
She was born with a unilateral complete cleft lip and palate on her left side along with an cleft in the palate on the right side.
She has at least one more surgery needed this year to reconstruct her palate.
Ali was born with multiple congenital heart defects, and yet her heart is currently functioning well.
One of the valves of her heart has only 2 flaps instead of the normal 3.
One of the valves of her heart has only 2 flaps instead of the normal 3.
She was born with 2 holes in her heart and also an extra vessel. The holes have already closed, and the extra vessel as of last September had shrunk to less than 1mm and is expected to already have closed off completely now.
Alegria has been seen by numerous doctors including her family doctor, neonatalogist, pediatric cardiologist, pediatric surgeon, pediatric neurologist, pediatric pulmonologist, pediatric intensivist, and chiropractor along with numerous other therapists and specialists.
Alegria has a numerous pieces of medical equipment including an apnea monitor, pulse oximeter, suction machine, portable oxygen, ambu bag, and a feeding pump.
Alegria still sleeps with an apnea monitor at night to alert us if she stops breathing although she has not had an apnea episode since July. She also sleeps on a Tucker wedge and sling which holds her at 30' incline in order to lessen reflux.
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This year we have learned a lot. God has taught us many things through this precious little girl! Today we celebrate and praise Him for this year He has given us with her. Thank you for joining with us in celebrating today and thank you for the support and care you have shown both Alegria and us her family this year!
O give thanks unto the LORD, for He is good: for his mercy endureth for ever. Psalm 107:1
Facts about Trisomy 13 (Patau Sydrome)
Trisomy 13 is due to the presence of an extra #13 chromosome. T13 occurs in approximately 1 in 10,000 live births. T13 has many similarities to Down's Syndrome (trisomy 21), but T13 is typically far more severe. Avg. life expectancy is less than 1 week, but 5-10% do survive to see their 1st birthdays. Often doctors mistakenly label all T13 as “incompatible with life.”
80% of children with T13 have congenital heart defect - 60% have cleft lip +/ palate - 60% Holoprosencephaly (undivided forebrain) 30% Kidney defects -10% Omphalocele (severe abdominal hernia)
Other common issues: reflux, apnea, seizures, scoliosis
Children surviving with trisomy 13 typically face significant learning delays, but many can and do learn to sit, walk, and even communicate.
Tenecia Hargrave is the oldest known living survivor with full Trisomy 13 (age 27 years old!!!)
Tenecia Hargrave is the oldest known living survivor with full Trisomy 13 (age 27 years old!!!)
There are almost 100 children and adults surviving with trisomy 13 which are listed on the livingwithtrisomy13.org website. Here are photos of just a few:
Grace Noel (age 2)
Natalia (age 9)
Grace Noel (age 2)
Josiah (age 12)
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What a wonderful testimony of God's grace in your life and in the life of Alegria. Thanks for sharing that video. It brought tears to my eyes.
ReplyDeleteGod truly makes no mistakes, and Alegria has brought much joy to many people.
Blessings!