A lot of T18 babies have strabismus or other eye issues. After an eye examination it was determined that Alyssa is farsighted too. We began patching her eye and she was prescribed eye glasses to correct the problem. We didn't give a lot of time (about a month) to determine if these non-surgical methods would work. For us this was sufficient time to learn that she would benefit from surgery. Since we knew that she was going to have surgery for the G-tube, her eye doctor was more than willing to come on board and fix her eye at the same time. The results have been wonderful, her left eye is corrected. She is still favoring her right eye though so we continue to obstruct her vision in that eye for brief periods in order to re-train her left eye.
(Alyssa 10 months old)
Alyssa had a skin biopsy, why? Shortly after her birth Alyssa via blood draws was diagnosed with Trisomy 18 (Edward's Syndrome). Once again taking advantage of Alyssa's April 2009 surgery, we decided to get a second skin biopsy to confirm a diagnosis of full Trisomy 18. Her genetic doctor stated:
Alyssa is a remarkable baby...who is showing amazing gains in her milestones that are most unexpected in a child with her condition...
We wondered if her progress was because she has mosaic T18 and not full T18. This question was more temporal for us then anything else. The answer wasn't going to change how we feel about treating Alyssa's T18. Since her birth we've taken a moderate approach for lack of a better explanation. We know that every life is valuable and that every child has a spirit that needs to be nurtured. In all that we do on Alyssa's behalf, prayers for Godly wisdom and the aforementioned thoughts guide our way. Last week we learned that she is in deed full Trisomy 18. It's nice to know. I've also come to think that her survival along with the survival of many other babies/kids with full T18 is an encouragement. Not only to other parents who receive this diagnosis while their child is in utero but for doctors as well..T18 awareness~knowing these babies do survive and live happy lives~will help to change the view of the condition.
How does your husband deal with having a daughter with special needs?
Ed is a good dad. He is an involved dad. He has been filled with common grace and a heart for kids. I am thankful that he is an experienced dad (that we are experienced parents) that has skills to draw from for this situation. He loves Alyssa just like anyone of our 3 other kids. It was shock to him to hear her diagnosis; sadness, fear, and anxiety came along with that too. Yet as she gained strength, so did he and the hope of her surviving longer than anticipated encouraged him. Ed is a laid back kind of guy; doesn't talk in depth about his feelings. He mostly lets his actions speak for him. He has said though that it is difficult to be sad when he has Alyssa here smiling at him. He's been a good example for all our kids but especially for our boys in demonstrating unconditional fatherly love. He could have easily chosen to withdrawal into his "man cave", but he is an involved dad with his "special needs" daughter. I know he sees Alyssa as his baby girl and doesn't let the label of a diagnosis negatively impact his love for her. I pray for him everyday, that when it is time for them to part on this earth..that saving grace will allow them to be together again in glory.
How does get Alyssa get so many therapies? Pennsylvania is one of those states that leads in providing appropriate assistance for families with disabilities. Our county in particular is great at meeting the needs of families. When Alyssa was three months old we signed up for early intervention services. Many therapies, resources are attached with early intervention. If you are not familiar with Early Intervention (E.I.) I suggest you look it up in your state. Locally you can call your Department of Public Welfare or Department of Mental Health/ Mental Retardation office for assistance.
Our provider of services is through the Cerebral Palsy Association (CPA). Alyssa has physical therapy (PT) and Occupational Therapy (OT) each once a week. She also receives specialized instruction (SI), to learn how to play' twice a month. The therapist(s) she has are wonderful, very attentive to her needs and development of skill. Alyssa working with her OT Kris on tucked chin positioning for sitting
What can milestones has Alyssa reached? Alyssa developed a social smile about the same time a typical baby would; which was around 2 or 3 months old. She coo's, not always the vowels sounds sometimes it's still guttural. She recognizes our family and frequent visitors. She responds accordingly to each of us and she notices strangers too. She'll cry or seem timid when being held by someone new. If left alone in a room, she'll "call" us; she is content not being held but definitely likes an audience. She began rolling to one side around 8 months and now rolls both ways (her left side roll is stronger). With positioning she can roll over onto her belly and back. When laying on her tummy she can hold her head up well for a good 5 minutes. She still likes to tip her head back when sitting,which cuts down her ability to sit independently. She can sit up for brief bits 1-2 minutes before her positioning goes haywire. she is batting, grabbing and shaking toys and has been doing so consistently for about 2 months. She likes to pull hair and necklaces too!
I just keep in mind that she can do what other babies do, she just has to be taught and it may take her a little longer. I try not to place limits on what she can do or what we will expose her to..she takes the lead and we will follow.
Alyssa playing with her favorite toy.
This spinning toy lights up and she loves it!