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Unity, Knowledge & Empowerment

 
Amanda's Friends
 Stephanie

 

 

 

 

 

 

 

 

 

Welcome to Leah's Page

 

Leah is the precious result of several years of trying to have children. After two miscarriages and lots of fertility procedures, we were pregnant with twins. They grew normally, sonograms showing no problems. At 22 weeks they discovered that the cervix was slightly dilated and the lower of the two sacks was bulging through. I was taken directly to the hospital and put on meds to stop any contractions. While attempting a cerclage, the sack started to leak. We thought we had lost everything once again. On anti-contraction meds, steroids for the babies' lungs, and a whole pharmacy of other things, we held onto our girls and our hope for 5 1/2 weeks. On March 31st, 1996, when delivery couldn't be held off any longer, the twins were delivered by c- section. Amelia, the smallest and the one with the ruptured sack, did not do as well as her big sister Leah. Besides having less developed lungs, she also had some deformities of the respiratory and digestive systems that were undetected by the sonograms, totally unrelated to her prematurity. She died after eight hours of struggling to save her.

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In Loving memory of Amelia

Leah, born at 2lbs. 2oz., 27 1/2 weeks gestation, Apgar of 9 and 9, went on a respirator with minimum puffs and room air. She had the lights and eye patches for jaundice and an IV and monitor wires stuck all over her. We had to wait for several days to hold her, when she was scheduled to have her isolette changed. She was so tiny, it was like holding just a bunch of blanket, so bundled up, you could hardly see her. She was a feisty one from the start, extubating herself two or three times by pulling on the tubes coming out of her nose and mouth. The last time she did this, she ended up on steroids for her lungs with the respirator turned up and oxygen added. She was off the respirator soon after that. Her stay in the NICU was 3 1/2 months long. We saw her every day, usually just touching her inside the isolette for hours. When she was big enough to come out of the isolette,
we wanted to hold her constantly. They let us give her baths and dress her and
change her diapers, both of us wanting to do it all, but having to take turns. We tried breastfeeding, another special chance to hold her. Her suck was so weak and my supply so low, that it never worked out. Bottle feeding was almost as difficult due to her weak suck. I think that they suspected something then, but the problem was evaluated as not related to any nervous system disorder. We watched all of her friends go home right around their due dates. Leah was going way past hers. Finally, on July 10th, they let us take her home, feeding problems, heart-lung monitor, and all. By fall, we were noticing things that she was not doing that her nursery-mates were. Her poor vision was especially obvious. We took her to the eye doctor and he diagnosed her optic nerve atrophy, not correctable with glasses. He was troubled by her other lags and sent us for a CT scan. This showed some loss of brain tissue, which was explained to us by the Neonatologist that had followed her in the hospital. He explained that this stiffness in her arms and legs was common in children with CP. We hadn't noticed the stiffness in her arms and legs and had put the lags down to lack of motivation due to poor eyesight. We were shocked. By Feb., Leah started with PT and a special ed. teacher. She picked up vision therapy in the spring and OT and Speech that summer. We were trained in infant massage and did that every night for a year and a half until things became too hectic to be so regular. Leah has been diagnosed with spastic quad., but her PT feels that a better description is dystonia. She can and does control certain things by really concentrating and practicing them. Her vision has improved to the point where she looks at and recognizes many things. This past summer, she started saying "Hi" and making kiss sounds, and at Christmas, she started saying "B" words like blue, book, blocks, Brendan. Of course, the differences are slight, but they are there!

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She says "Hi Pooh" and several other words. She was especially excited to have Santa come to the house and was thrilled to find Pooh in her stocking. She has started to have tantrums when Mommy turns off the Pooh videos, very 2-year-old-like. She's really getting into Barney and Little Bear now. She adores dancing with Mom or Dad and loves to spin, swing, bounce, and fly around the room.

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She insists on tasting everything that you eat, especially ice cream, fritos, and sour cream. She has started reaching and touching, opening her fingers, grasping things, transferring between hands. She comprehends everything that you say to her, and her eyes tell you that more and more, she's understanding the world around her. She has a wonderful sense of humor-she loves to bite her bib or her bottle and look up at you with a wicked grin, she loves funny faces and silly sounds and tickling. She loves music of all sorts, swimming, and baths with Dad. She gives an excited "hmmm" for yes, makes signs for "more" and "all done" and has made her own sign for "I love you"- she reaches up and touches your face with gentle fingers. She loves to snuggle, hug, squeeze, and kiss. She gets and gives these on a constant basis. She loves other children, although she's still not very excited about going to other adults. She's just coming out of a very serious
Mommy phase. She loves her dad, though, and squeals and wiggles all over when he comes home. She works so hard and complains so little during therapy. Her attention span is amazing for such a little one. She adores books and loves
most any activity that the therapists bring for her. She'll tell them right away if something is yucky or if she's getting tired of it. She has made such progress, we're so proud of every little thing that she accomplishes. Leah continues to have lots of feeding problems-gagging, vomiting, burping, getting full too fast and staying full too long.á She used to take some solids, but is back to 4 bottles, about 8 oz. apiece, taking about 2 hrs. a piece. Most of the day is feeding her. She still cannot sit, stand, or walk on her own, but does them all with support. She's been a very healthy girl for the past 3 years-only a couple of colds, 1 ear infection, one 1-day stomach bug. She is looking at surgeries to correct an inward-pulling eye and a dislocated hip. Her GI wants to take a peek in her esophagus and stomach to see what's going on. We're getting ready to transition from our EI program to
the local school district at the end of March. Our therapists have been so great, some like family, we're going to miss them! Although the CP has caused so much stress and makes life so difficult so much of the time, we would choose to have our Leah over anything in the world.

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She is our precious
princess, our sunshine, our angel, our perfect little person. Who knew you
could love a person so much? I'm sure you can understand why.

á

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