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Update April 13, 2010
 Each
day that JayLa lives is a blessing!
I am holding on to my faith in
the Lord. For that's what keeps me going each day. JayLa is now two years
and eight months of age. Our day to day lives are full with doctor
appointments, visit to several different therapists, and trying to control
behavior issues. The hope of JayLa one day being able to communicate with
others in a positive manner and walk is what gives me the energy that I need
to keep going. It's been so emotional and stressful being a single parent of
a child with partial trisomy 13 and a nine year old. JayLa's big
sister is my biggest helper and for her we are thankful.
JayLa's
current development is that of a 8 to 12 month old baby. She has changed so
much in the past year. She use to be a very happy baby filled with joy and
always smiling. Now she doesn't smile nor laugh much and she is always
crying as if she is in pain. She use to sleep often but now she has to take
medicine in order for her to get a good six hours of sleep. She is currently
having some major behavioral issues and none of the specialties seem to know
what it stems from. It's so overwhelming but when she does smile or laugh;
I'm so filled with joy. I wish I could bottle those few moments up in a
bottle to keep.
Currently, JayLa can crawl, sit up unsupported,
pull to stand while holding on to something, climb onto her play horse,
place an object into a box and pull it out of a box, hold her sippy cup, and
eat table foods such as yogurt, apple sauce, dry cereal, crackers, and
pudding. In water therapy she is learning how to balance on weight and lift
her feet up one at a time to take step while being held.
JayLa still
wears glasses and hearing aids. Now she is wearing AFOs to give her more
support in her ankles and feet. She also wears immobilizers on her arms to
keep her from bitting herself or pulling her hair out.
In February
of this year JayLa had surgery on her spinal cord at Children's National in
Washington, D.C. She is scheduled to have another surgery next month to have
more ear tubes placed in her ears.
I thank God for JayLa's life
every morning when she awakes and every night when she drafts off to sleep.
Lita Godfrey
(mother of JayLa Robin Simmons Godfrey)
 6-13-08
Thank God for his grace and mercy!
A lot has happened since my last posting. Almost 10 months of age, weighing 16
pounds and 25 inches long, overall JayLa is healthy.
However, a few weeks ago JayLa went to be examined by a pediatric
ophthalmologist who believes that she has a vision impairment. The
ophthalmologist believes that she can see to some degree but, he thinks that her
brain isn’t receiving the information from her eyes in order for her to have a
picture image of what it is that she is looking at. On the same day of this
appointment JayLa also had a suck/swallow exam. God knew that I couldn’t handle
anymore bad news so, at the suck/swallow exam we were pleased to see that she
did very well and can now eat stage one baby foods.
JayLa is currently receiving OT, PT, and speech therapy. She is in the process
of being evaluated by the Maryland School for the Blind so that she can start
receiving vision stimulation. Last week we were very happy to see that JayLa’s
physical therapist started placing her in a Stander. The Stander is used to help
strengthen the leg and back muscles. It also helps to get babies use to standing
up straight. JayLa doesn’t like it very much but, I think that she will get use
to it after a while.
JayLa went to visit her genetic specialist yesterday. She was very pleased with
JayLa’s overall development. I was surprised to learn that the genetic
specialist didn’t have any information on vision impairment relating to partial
trisomy 13 nor full trisomy 13 persons. I believe that this is God’s way of
letting me know that he is still in control!
A few weeks ago, I tried to explain JayLa’s special issues to my seven year old
daughter, Taylor. I had a hard time explaining and Taylor had a hard time
understanding what I was telling her. At the end of our conversation Taylor
said, she (JayLa) looks perfect to me! All I could do was smile as I told her,
you’re right!
JayLa can roll over from her tummy to her back. She is trying very hard to sit
up from a laying down position. I noticed a few weeks ago that she knew how to
fall out when she is unhappy, it’s all so cute; for now that is! LOL Each day
with JayLa is filled with joy. We are so blessed that God gave us such a
wonderful gift, JayLa.
Lita Godfrey
(mother of JayLa) - - -
 5-28-08
Good day, I am the mother of an 8 month little girl born with Partial Trisomy
13.
JayLa Simmons Godfrey was born on August 25, 2007 (32 weeks) 2 lbs 13oz.
She was in the NICU at Sinai Hospital in Baltimore, Maryland for the first 98
days of her life. She underwent surgery before being discharged from the
hospital on Dec. 1, 2007. She had three extra digits removed, a nissen
fundoplication (wrap), an umbilical hernia, and a G-tube. JayLa was able to
drink her first 60 cc bottle a half a hour before being discharged from the
hospital.
Two months after being discharged from the hospital JayLa was receiving all
of her feedings via bottle. In March of 2008, we were blessed to have JayLa's
G-tube removed. Just when you think that the battle is over another storm comes.
On April 16, 2008, we were told that JayLa has a case of severe hearing loss
(65/70). The doctors said it is related to her Partial Trisomy 13. In the past I
would have been crying and very upset but, I know in my heart that God is
watching over her. She is a very strong little girl! She is filled with joy and
has a smile and laugh that touches everyone’s heart. She is truly my little
miracle child.
Before learning about JayLa's hearing loss, I wouldn't visit any of the websites
regarding Trisomy 13 because, I feared seeing and reading about things that I
didn't think I could handle. I first logged onto this website on April 17. The
website is very informative and helpful. It feels great to have supportive
people to share with.
Many blessings,
Lita
5-15-08
New photos of JayLa wearing her hearing aids for the first time. I'm so blessed
to be JayLa's mom.
Keeping you'll in my prayers.
Lita Godfrey
 5-15-08 JayLa spent the first 98 days of her life in the NICU. Today, she is
full of joy. She is always smiling, laughing, and making baby talk. She
loves to be kissed! JayLa's a living witness that God is able to do all things!
Let's keep each other in prayer
Lita Godfrey
wgodfrey@golombard.com
tmooshee@hotmail.com Lita &
Kevin (Parents)
Taylor (Big Sister)
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