1st few weeks of life in Mommy’s womb: spotting, but after doctor’s check-up, Krissy seemed okay. Bedrest for at least 2 weeks.
Smooth pregnancy – Mommy did not get sick except for cough and cold that happened once.
2 weeks before giving birth: ultrasound showed some fluid (that should not be in that amount) in left lateral ventricle of Ate’s brain.
June 15, 2009. Normal delivery, relatively smooth and easy. Mommy walked into hospital grounds at 3am and was already 8cm by the time the doctor checked on her. Epidural was immediately given as requested by Mommy. About 5 pushes with fundal pressure from doctor, Ate was born 5am. She cried a few seconds after she was lightly tapped. Cord coil on Ate, but doctor’s say it was not long and posed no danger. Fluid had to be taken out of Ate’s lungs.
1 week of life: Ate’s brain ultrasound showed the fluid in left lateral ventricle has lessened.
2 months of life: Pedia-Neuro reviewed results of tests, all okay. Not concerned about the fluid in brain, but more on the gray matter if it was affected. Continue breastfeeding. Observe Ate. Play with Ate. Note: Ate has left gaze preferential view so play and talk to her on her right side.
3 months of life: All going well. Exclusive breastfeeding. Ate cooing and gurgling. Eyes following movement. Has eye contact and smiles at faces. Enjoying classical music. Slowly lifting her head.
4 months of life: Ate still cannot pull-to-sit. Hardly lifting her head now. Has stopped cooing and gurgling. Arms are floppy. Eyes follow movement only at halfway point. Left gaze preferential view. Optha-Neuro did a check-up but all seemed well and she started looking more to the right. Parents thought Ate was just a little late.
November 15, 2009. 5 months of life: Ate hardly lifting head, does not react to you, arms are floppy and legs stiffen often. She is restless often and seems to have “useless” movements. Ate lost her social smile.
November 17, 2009 Pedia-Neuro diagnosed Ate showing signs of GDD and microcephaly. Parents receive shocking news that Ate could be/have: mental retardation, cerebral palsy, down syndrome, autism but cannot be determined right now. She is 5 months but behaves like a 2.5 month and doctor said it is possible that at 20 years of age, Ate would have a brain of a 10 year old. Aggressive therapy and aggressive infant stimulation needed. Start with physical therapy to develop basic motor skills and eventually seek occupational therapy, speech therapy, whatever else therapy.
Mommy cried for 2 days, depression slowed breastmilk supply. Infant formula introduced to supplement. Infant formula intake between 6-10oz per day only while the rest of the day was on breastmilk.
Ate visited various special schools and was evaluated by 3 therapists and 1 Developmental Pediatrician – all separately concluded she is only behaving like a 2.5 month baby and all recommended same aggressive therapy. Finally found a physical therapist to do home sessions.
December 2, 2009 First seizure attack (after about 2 weeks of supplementing with infant formula). Rushed to Makati Medical Center ER. Was not admitted, but an EEG had to be done. Doctors could not conclude if it was indeed a seizure at that time. Parents notice habit of hands wiping her eyes and nose.
At least 2 seizures a day happened after that. Mommy had video camera on stand-by and showed videos to Pedia-Neuro. EEG results finally came out and showed seizure spikes. By this time, 3 seizures a day.
Ate still not smiling or cooing although sometimes mutters a sound “uh.” She cries during seizures. Complains with a coughing sound when uncomfortable (when being washed or when she’s sleepy but can’t seem to sleep).
December 7, 2009 Valproic Acid (Depakene) anti-seizure medication introduced in low dosage but gradually increased. Possible side effect is harm to the liver. But priority is to stop seizures otherwise development will continue downhill. Seizures happened 4 times a day on average. Pedia-Neuro said give medication 2 weeks to take effect. Do liver test and other kinds of blood tests after 2 weeks.
December 21, 2009 Liver test result so far okay. But seizures have not improved but increased 4-5 times a day. Other blood test suggest that problem could be metabolic. Since seizures happened after infant formula was introduced, Mommy decided to go breastmilk only.
December 22, 2009 Ate experiences the needle several times as they draw blood from her vein and arteries for several tests.
December 23, 2009 Ate’s 1st MRI attempt. She woke up halfway and would not go back to sleep even with Demerol injected in her.
January 6, 2010 Ate’s 2nd MRI attempt. At 1:30pm injected via i.v. with Benadryl and Demerol. Allergic reaction swelling of tongue, redness on nose and eyes, tremors around lips. Latched on to mommy immediately and within minutes of having breastmilk, allergic symptoms disappeared.
January 7, 2010 Ate sees a Pediatrician-Geneticist specializing in metabolic disorders. Further tests have to be done. Awaiting results of previous urine and blood tests. Pedia-Geneticist suspects mitochondrial disease.
January 8, 2010 Pedia-Neuro said Ate’s MRI results showing schizencaphaly and lactate peak. Pedia-Neuro suspects mitochondrial disease. MRI official report reads lissencephaly type I.
January 14, 2010 Ate still has not smiled at us again. She does not coo or gurgle but sometimes mutters “uh” like she forgot to say the other sounds she used to make. She often looks at the light and can follow the light from the cellphone screen. She can lift her head for a few seconds but cannot push herself up using her arms and shoulder. She seems to have seizures of staring or repeated useless movements like turning her head left and right aimlessly. This happens often during the day. She still rubs her right hand (sometimes both) on her eyes and nose. When on prone, she rubs her face on the bed. Since birth, she has always preferred looking to the left. On prone, she rests her head looking to the left and when we turn her head to the right, she lifts it and returns to the left. When we force her to keep looking right on prone, she gets irritated and angry. She is often sleepy now – perhaps the medication? It seems she cannot hear since she does not react even when we try to startle her with loud noises – awake or asleep.
January 25, 2010 Ate’s Audio Brainstem Response Test. Waiting for official reports although we have been told that she has profound hearing loss. She can hear an airplane jet like a whisper only.
January 27, 2010 We went to a Pediatrician – Anthroposopic medicine. Ate started on homeopathic remedies for her seizures. Valproic Acid and Lamictal still to be given but dosage not to be increased.
January 30, 2010 Ate’s seizures has lessened to 1-2 a day and the “intensity” has significantly decreased. She doesn’t yelp during spasms and cries more out of irritation. She has a bad cough with phlegm though – which she had for quite a while.
Smooth pregnancy – Mommy did not get sick except for cough and cold that happened once.
2 weeks before giving birth: ultrasound showed some fluid (that should not be in that amount) in left lateral ventricle of Ate’s brain.
June 15, 2009. Normal delivery, relatively smooth and easy. Mommy walked into hospital grounds at 3am and was already 8cm by the time the doctor checked on her. Epidural was immediately given as requested by Mommy. About 5 pushes with fundal pressure from doctor, Ate was born 5am. She cried a few seconds after she was lightly tapped. Cord coil on Ate, but doctor’s say it was not long and posed no danger. Fluid had to be taken out of Ate’s lungs.
1 week of life: Ate’s brain ultrasound showed the fluid in left lateral ventricle has lessened.
2 months of life: Pedia-Neuro reviewed results of tests, all okay. Not concerned about the fluid in brain, but more on the gray matter if it was affected. Continue breastfeeding. Observe Ate. Play with Ate. Note: Ate has left gaze preferential view so play and talk to her on her right side.
3 months of life: All going well. Exclusive breastfeeding. Ate cooing and gurgling. Eyes following movement. Has eye contact and smiles at faces. Enjoying classical music. Slowly lifting her head.
4 months of life: Ate still cannot pull-to-sit. Hardly lifting her head now. Has stopped cooing and gurgling. Arms are floppy. Eyes follow movement only at halfway point. Left gaze preferential view. Optha-Neuro did a check-up but all seemed well and she started looking more to the right. Parents thought Ate was just a little late.
November 15, 2009. 5 months of life: Ate hardly lifting head, does not react to you, arms are floppy and legs stiffen often. She is restless often and seems to have “useless” movements. Ate lost her social smile.
November 17, 2009 Pedia-Neuro diagnosed Ate showing signs of GDD and microcephaly. Parents receive shocking news that Ate could be/have: mental retardation, cerebral palsy, down syndrome, autism but cannot be determined right now. She is 5 months but behaves like a 2.5 month and doctor said it is possible that at 20 years of age, Ate would have a brain of a 10 year old. Aggressive therapy and aggressive infant stimulation needed. Start with physical therapy to develop basic motor skills and eventually seek occupational therapy, speech therapy, whatever else therapy.
Mommy cried for 2 days, depression slowed breastmilk supply. Infant formula introduced to supplement. Infant formula intake between 6-10oz per day only while the rest of the day was on breastmilk.
Ate visited various special schools and was evaluated by 3 therapists and 1 Developmental Pediatrician – all separately concluded she is only behaving like a 2.5 month baby and all recommended same aggressive therapy. Finally found a physical therapist to do home sessions.
December 2, 2009 First seizure attack (after about 2 weeks of supplementing with infant formula). Rushed to Makati Medical Center ER. Was not admitted, but an EEG had to be done. Doctors could not conclude if it was indeed a seizure at that time. Parents notice habit of hands wiping her eyes and nose.
At least 2 seizures a day happened after that. Mommy had video camera on stand-by and showed videos to Pedia-Neuro. EEG results finally came out and showed seizure spikes. By this time, 3 seizures a day.
Ate still not smiling or cooing although sometimes mutters a sound “uh.” She cries during seizures. Complains with a coughing sound when uncomfortable (when being washed or when she’s sleepy but can’t seem to sleep).
December 7, 2009 Valproic Acid (Depakene) anti-seizure medication introduced in low dosage but gradually increased. Possible side effect is harm to the liver. But priority is to stop seizures otherwise development will continue downhill. Seizures happened 4 times a day on average. Pedia-Neuro said give medication 2 weeks to take effect. Do liver test and other kinds of blood tests after 2 weeks.
December 21, 2009 Liver test result so far okay. But seizures have not improved but increased 4-5 times a day. Other blood test suggest that problem could be metabolic. Since seizures happened after infant formula was introduced, Mommy decided to go breastmilk only.
December 22, 2009 Ate experiences the needle several times as they draw blood from her vein and arteries for several tests.
December 23, 2009 Ate’s 1st MRI attempt. She woke up halfway and would not go back to sleep even with Demerol injected in her.
January 6, 2010 Ate’s 2nd MRI attempt. At 1:30pm injected via i.v. with Benadryl and Demerol. Allergic reaction swelling of tongue, redness on nose and eyes, tremors around lips. Latched on to mommy immediately and within minutes of having breastmilk, allergic symptoms disappeared.
January 7, 2010 Ate sees a Pediatrician-Geneticist specializing in metabolic disorders. Further tests have to be done. Awaiting results of previous urine and blood tests. Pedia-Geneticist suspects mitochondrial disease.
January 8, 2010 Pedia-Neuro said Ate’s MRI results showing schizencaphaly and lactate peak. Pedia-Neuro suspects mitochondrial disease. MRI official report reads lissencephaly type I.
January 14, 2010 Ate still has not smiled at us again. She does not coo or gurgle but sometimes mutters “uh” like she forgot to say the other sounds she used to make. She often looks at the light and can follow the light from the cellphone screen. She can lift her head for a few seconds but cannot push herself up using her arms and shoulder. She seems to have seizures of staring or repeated useless movements like turning her head left and right aimlessly. This happens often during the day. She still rubs her right hand (sometimes both) on her eyes and nose. When on prone, she rubs her face on the bed. Since birth, she has always preferred looking to the left. On prone, she rests her head looking to the left and when we turn her head to the right, she lifts it and returns to the left. When we force her to keep looking right on prone, she gets irritated and angry. She is often sleepy now – perhaps the medication? It seems she cannot hear since she does not react even when we try to startle her with loud noises – awake or asleep.
January 25, 2010 Ate’s Audio Brainstem Response Test. Waiting for official reports although we have been told that she has profound hearing loss. She can hear an airplane jet like a whisper only.
January 27, 2010 We went to a Pediatrician – Anthroposopic medicine. Ate started on homeopathic remedies for her seizures. Valproic Acid and Lamictal still to be given but dosage not to be increased.
January 30, 2010 Ate’s seizures has lessened to 1-2 a day and the “intensity” has significantly decreased. She doesn’t yelp during spasms and cries more out of irritation. She has a bad cough with phlegm though – which she had for quite a while.
I admire you, Kring, for your strength and courage. God bless you and beautiful Anya always.
ReplyDeleteAs heartbreaking as it must have been, all the months that went before, and all the months and years of therapy and medication ahead... know that people are praying with you and rooting for Anya to win her battles...
ReplyDeleteShe is beautiful and perfect, but will need more love and understanding than most babies... trust that you have such love to give.
And when you're feeling down and lost and just plain tired, turn to friends and other support groups you may find. You don't have to go through this alone.