UPDATED: AUGUST 09
Alyssa's Blog Site
Since our initial prayer request Alyssa has been doing remarkably well. She had a serious respiratory infection in December requiring a brief hospital stay and more recently a mild bout with pneumonia; but recovered well from both. Routine appointments with her various specialist do not reveal anything overtly concerning. Alyssa now wears a brace for treatment of scoliosis and may require tubes in her ears for hearing concerns. Eating and maintaining her weight is a constant concern. Many of her more serious concerns like her diaphragmatic hernia, remain a non-issue. I know that her wellbeing is because of the petitions and prayers on her behalf.
Thank you for the continued prayer support. In two months Alyssa will be 2 years old! For babies (kids) with Trisomy 18 this is yet another significant milestone. In honor of Alyssa and to increase awareness of Trisomy 18 in our community ; a 5K run/walk will take place in July. We are very excited to participate in Alyssa's 5K (www.hopeforalyssa.com) not only to celebrate our little girl but to remember all the babies who have been and will be born with Trisomy 18.
Even though Alyssa is well overall, there are various struggles in our daily life to keep her healthy and engaged. We want to help her to develop skills and enjoy her environment to the fullest. Please keep praying that Alyssa will make strides and will remain with us; as this is our hearts desire. God is good and I trust in his plan; prayers for this to remain in my heart during whatever struggles/triumphs we face would also be wonderful. Thanks so much!!
1. That Alyssa recovers well from 2 separate episodes with sedation. The first being 8/25 for an CT scan and MRI. Then in September (the date to be determined) for right eye surgery.
2. Prayers for good outcomes with the strabismus correction would be appreciated. Alyssa is having issues with vomiting we would like to avoid surgical intervention, prayers for wisdom and practical interventions that would allow her to be treated in the least invasive method would also be welcomed.
1. Alyssa reached the milestone of her first birthday on 7/15/2009. We give praise to God for His mercies over the last year. She has exceeded the expectations of the doctors and continues to amaze us she steadily gains skills.
Alyssa is a joy. She is very much loved by her older brothers and sister. Dad and mom think she's pretty neat too. Her diagnosis of Trisomy 18 was confirmed 2 days after she was born. This was devastating news as the pregnancy was somewhat uneventful, in comparison to my other more difficult pregnancies. We were told not to expect her to survive; the time intervals changing from hours to no longer than 3 months. Our first thoughts was that we loved her and didn't want to let her go...
Now at 13 months Alyssa is considered a "long term survivor" in the T18 world. She is a cheerful interactive baby. Alyssa loves to smile and coo. Slowly she is fulfilling each developmental stage for a baby; this is much more than what we were told to expect. She is showing us what she can and will do. It is with praise-filled amazement that we enjoy her as she continues to defy expectations. Alyssa has many needs and medical appointments are frequent but her "spit-fire" nature encourages us. We know it is by God's grace that she is here and hope that we will enjoy her for many years to come.