About me:
hi everyone. i have four wonderful children. there are my twins, taylor(girl) and tyler(boy) who are 8 years old, then there is my very active 2 year old boy named logan and my youngest is 10 1/2 month old lil girl madison(a.k.a. maddie).
my three oldest are relatively healthy. tyler is autistic but is doing remarkably well. then there is lil maddie:
i delivered maddie at 36 weeks from preterm labor, Polyhydramnios and lil maddie was in distress. when maddie was born, she was born with a PFO(hole in heart), PDA(extra valve in heart) and an enlarged heart, a slightly enlarged liver and she had alot of edima. she was leucopenic(low white blood count) and nuetropenic(low absolute nuetrrophil) and anemic. she was in the NICU for 8 days hooked up to heart monitors and having around the clock antibiotics for possible infections. during her stay they attempted two spinal taps to rule out possible Meningitis and other infections that could directly effect the spinal fluid and brain. they both had failed.
they could no longer do anything else for her so they discharged her to the care of hematologist/oncologist. within two weeks she was back into the hospital for an emergency blood transfusion and bone marrow biopsy/apiration. by the time she was 3 weeks old they told me that she has a Bone Marrow Failure, Diamond Blackfan Anemia.
since then maddie has had a broviac implant, ng feeding tube, 13-14 hospital stays do to either infections or emergency blood transfusions and other diagnosis'...colitis(autoimmune disease of the intestine) is one and they are still working on a diagnosis due to her low IGG(within the immune system) levels.
the experts have some what with drawn the original diagnosis of the DBA and they are just calling it a bone marrow failure right now. this is why we are traveling to ohio. we are seeking out Dr. Harris. St Judes recommended him and his bone marrow failure clinic. he is an expert on these failures.
unfortunantly we could not keep the original appnt of march 17th due to traveling. we are infact rescheduled for april. we hope to find the source of all these problems. we have every confidence in ohio. thank you for you time and thank you for the ongoing prayers.
as most of you know my lil niece went to be with Jesus on may 12, 2008. it has been a really hard and trying time for the family but through God's strength we will be strong. we love and miss belle so much. we will see her again some day!!!!
Who I'd like to meet: i would love to meet up with lil belle again someday
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