When we were rushing to bring Ate to the hospital, mom told my dad to make sure that Ate receives the Anointing of the Sick. I didn’t think she’d need it because I was pretty sure Ate would survive pneumonia. But my dad assured mom that even God were to take Anya, she would go straight to heaven because she’s so pure and innocent. I never thought I’d lose her.
It wasn’t until her 4th or 5th day of confinement when I thought that I could lose her, She was getting well from pneumonia but she had to be given extra medication to prevent ulcer and steroids to open up pathways to her lungs for the phlegm to get out. It’s these complications that happen that could break her. I had feared that her strength would wane before the medicines took effect. And then I cried.
I could not bear the idea that she would be taken so early from me. In her first few months, when she was going through physical pain from her violent seizures, and when I was going through pain thinking that she would live life as an invalid, I had thought that death would be a better alternative. At least for a split second. But I remembered what a friend said, that Ate’s condition is better than other children who have terminal illness. The parents knew that time with their child would soon come to an end. Their sorrow would eventually stop, but so would their joys.
Ate gives me so much joy. Even when she was not reacting to us she still somehow managed to make me happy. It’s kinda hard to keep playing with someone if they have no reaction. Somewhat like autistic children, they don’t seem to care about you. My friend told me too that she would rather have a child with cerebral palsy than a child with autism since they live in their own world. They’re with you, but at the same time they’re not.
Whatever the case, I can’t bear losing Ate. So I cried and cried alone that night since my husband was in the hospital with her and I couldn’t stay with them. I apologized to my baby inside me. I asked him to forgive me for the sorrow I felt that could have affected his development while inside me. He’s a strong baby I know. I talked to him because I had no one else to talk to and he was the best person to talk to at that time. He knew how I felt and probably shared in the sorrow too. I told him not to bear it on himself. Well, that night he was kicking and moving around me and trying to make me feel happy, And assured! And I did feel that. More than his kicks and spins inside me, I felt his love and comfort.
I worry too – I think too much – if I have enough love to show to both my children and my husband. Love is deep and as long as I am anchored in the Lord, I’ll have all the source I need. But on the human plane, will I have enough energy and time (or time management skills) to give them the kind of love and attention they need from me? I hope so! Guardian angel, please help me!
It’s been 2 weeks since we have been out of the hospital and Ate is looking good. Even her 1st session with Pablo Beelen was very good. He promised that she will walk, run and most likely go to elementary school. I think she can do more. I have to believe it.
Tuesday, August 31, 2010
Sunday, August 22, 2010
Anya vs. Pneumonia
August 22, 2010 Ate vs. Pneumonia
Ate has been home since Monday! Yipeee!
Since we arrived home, we took a day to rest and sleep through most of the day. The following days was immediately trying to get back to our routine. We had physical therapy since she had spent a week in bed without any exercise. We had cranio-sacral therapy for some detoxing and relaxation. Another day with mommy and daddy just playing with Ate who has been babbling and making a lot more sounds. She slowly gains her appetite.
Breast milk donations came in at a timely moment and Ate has been drinking pure breast milk to strengthen her immune system. (We used to alternate potato milk with breast milk). We would still need more breast milk donations in the next few weeks so please pass the word! (Formula milk aggravates her seizures, animal milk hasn’t been tried and may be risky too, potato milk is just a very poor substitute) A few more kilos to gain for her and of course, she must maintain it and then gradually increase it too!
We thank you for all the support and the prayer warriors. Some who did not know her now have her in their hearts. She also has you in her ever-so-pure-heart. Ate’s strength continues to astound us. Even the doctors were glad that with just the least potent anti-biotic she overcame pneumonia considering her neurological condition. And that this is only her first time to be hospitalized compared to other special children of her age. Of course, we don’t want it to happen again!
The financial burden we had (during that week long stay) and now face once again is another aspect of our reality. But we are just too glad that she has been gaining her health back. Though great are our financial challenges, greater are our blessings. We believe our marriage is stronger as we face and overcome new challenges together. We feel our faith is growing and our dependence on God becoming more obvious to us that is has become an enlightening experience. We lost so much but we gain so much more. If we were our old selves we would probably say how weird we are right now. Weird nga talaga.
And the greatest blessing is that we have not seen any infantile spasms since! On the Feast of the Assumption of our Lady, we asked her if she would let us go home and leave the hospital. She probably said we asked for too little. On that day and since that day, Ate has not had any infantile spasms whatsoever! And she has been babbling and making sooooo much noise compared to before! Of course not yet appropriate to her biological age, but a great milestone for her neurological growth! Praise God! Thank you Mama Mary! Thank you prayer warriors here on earth and in heaven! Thank you Ate for blessing us all!
The fight history:
Wednesday, August 4: Had a runny nose and slight cough
Thursday, August 5: Cranio-Sacral Therapy helped by letting the runny nose run some more! Mom kept wiping nose! Slight fever in the evening. Natural remedy was to wipe me with warm towel soaked in water and vinegar. Fever went away.
Friday, August 6: Still had a runny nose. Cough didn’t sound too good. Slight fever in the evening. As temperature rose, seizures manifested with greater intensity. Homeopathic remedy was changed to get rid of fever. Cuprum was addressing the seizures but febrile seizures had to be addressed. Sponge bath with smelly vinegar again brought fever down.
Saturday, August 7: Fever gone, no runny nose, cough started to sound like a bark. Nebulizing with salinase.
Sunday, August 8: Was barking by now. Vomited everything she drank with some phlegm coming out. Fever started to slowly rise. Doctor came for a home visit. Diagnosed Pneumonia. Doctor stayed until fever went below 38 and gave warning signs if hospital was a must. Ate had risks of allergic reactions to medications (which she had at 6 months) and all vaccines have been moved to a later date because of neurological condition so immune system may not be able to handle injections and medications. Febrile seizures still there, homeopathic remedies changed again.
Monday, August 9 Anthony Racho’s birthday: Early morning fever suddenly shot up (probably to 40). Body felt cold, fingers turned blue, lips turned blue, eyes rolling up, may have lost oxygen to the brain, shallow and fast breathing, rushed to the emergency room. Oxygen support immediately given, heart rate above normal, respiratory rate way above normal. Felt like she was running a marathon. Ate’s lungs to begin with are weaker compared to normal lungs. Nurses screwed up the oxygen support and Ate inhaled some water to her already weak and tired lungs. Parents remained calm. Anti-biotics given through i.v. after skin testing showed no adverse reaction to medications. Ate learned to get mad. For the first time in her life she cried of frustration and pain (except for the violent seizures she had before) because of the many needles. Slept most of the day. A few infantile spasms for the day. Asked for Anthony to intercede in heaven. Anthony is Mommy's older brother who went to heaven when he was just 9 years old because of brain cancer.
Tuesday, August 10: Fever went down. Lungs not yet clear. Respiratory rate still too fast. Breathing shallow and fast. Slept most of the day. Cannot eat/drink yet, on i.v., stomach continues to churn so new meds given to avoid ulcer. Blood sugar tests with needles continue. Ate recognizes the nurses she doesn’t like (those who poke her) and those she likes (those who massage her back with this ridiculously expensive gadget to loosen the phlegm). Ate is very tired and losing weight. Neurologist came to see Anya and not concerned with the seizures but with the significant weight loss. Ate needs to gain 4 kilos asap. Ant-tart remedy given.
Wednesday, August 11: Fever was gone. Heart rate much better. Respiratory rate still fast. Breathing fast and shallow. Had more waking hours. Was carried during those waking hours but couldn’t move around much because of all the things injected in her including the oxygen support.
Thursday, August 12: Xray done in the morning showed significant loss of phlegm but not enough to send her home. Steroids given through i.v. to open pathways of lungs. Ate must eat today. Respiratory rate improved within the day and Ate had good chance of avoiding tube feeding. It was a matter of how long her strength would last from the time she got sick vs. how long before the medications would take effect. Good thing her strength is still there! Many prayer warriors!
Friday, August 13: Are we going home soon?
Email update: Ate was able to drink milk from the bottle! She did not need the 10 inch tube down her throat straight to her tummy! After 5 days of no food/milk it was a MUST for her to eat today. And thank God she did not need the tube! She drank from the bottle without aspirating and without compromising her breathing!
She still has oxygen assistance but it is slowly being decreased and it seems she is able to handle it.
She still has phlegm in her lungs but also decreasing. The steroids (given to open up pathways for phlegm to get out) is also being decreased.
Her milk intake is also slowly being increased since she can't gulp down 9oz like she used to. But she'll get there eventually.
Hopefully she will be discharge by Sunday morning.
Saturday, August 14: Still could not go home but oxygen support removed and Ate is able to breath on her own with enough oxygen levels in her body. She drank some more milk. The i.v. was transferred to her leg. Still saw 2 infantile spasms today.
Sunday, August 15 Feast of the Assumption of Our Lady: Mama Mary, please let Ate go home today! She had better plans – we did not see any infantile spasms or seizures today! We stayed on to finish the 7 days of anti-biotics. Mommy couldn’t resist and spent half the day with Ate and wore a mask the whole time! Mommys doctor ordered her to stay away – took anti-biotics and pro-biotics.
Monday, August 16: Finally going home today! Daddy was getting tired from his day and night shifts at the hospital and was lacking lots of sleep. Took a while before everything was settled with the cashier. Upon arriving at Oma and Wowo’s house to pick up some things, Ate was smiling and cooing with excitement. She knew where she was! And when we were finally at home with Mommy and Daddy in bed, Ate was rolling on her bed and was glad to be home!
Ate has been home since Monday! Yipeee!
Since we arrived home, we took a day to rest and sleep through most of the day. The following days was immediately trying to get back to our routine. We had physical therapy since she had spent a week in bed without any exercise. We had cranio-sacral therapy for some detoxing and relaxation. Another day with mommy and daddy just playing with Ate who has been babbling and making a lot more sounds. She slowly gains her appetite.
Breast milk donations came in at a timely moment and Ate has been drinking pure breast milk to strengthen her immune system. (We used to alternate potato milk with breast milk). We would still need more breast milk donations in the next few weeks so please pass the word! (Formula milk aggravates her seizures, animal milk hasn’t been tried and may be risky too, potato milk is just a very poor substitute) A few more kilos to gain for her and of course, she must maintain it and then gradually increase it too!
We thank you for all the support and the prayer warriors. Some who did not know her now have her in their hearts. She also has you in her ever-so-pure-heart. Ate’s strength continues to astound us. Even the doctors were glad that with just the least potent anti-biotic she overcame pneumonia considering her neurological condition. And that this is only her first time to be hospitalized compared to other special children of her age. Of course, we don’t want it to happen again!
The financial burden we had (during that week long stay) and now face once again is another aspect of our reality. But we are just too glad that she has been gaining her health back. Though great are our financial challenges, greater are our blessings. We believe our marriage is stronger as we face and overcome new challenges together. We feel our faith is growing and our dependence on God becoming more obvious to us that is has become an enlightening experience. We lost so much but we gain so much more. If we were our old selves we would probably say how weird we are right now. Weird nga talaga.
And the greatest blessing is that we have not seen any infantile spasms since! On the Feast of the Assumption of our Lady, we asked her if she would let us go home and leave the hospital. She probably said we asked for too little. On that day and since that day, Ate has not had any infantile spasms whatsoever! And she has been babbling and making sooooo much noise compared to before! Of course not yet appropriate to her biological age, but a great milestone for her neurological growth! Praise God! Thank you Mama Mary! Thank you prayer warriors here on earth and in heaven! Thank you Ate for blessing us all!
The fight history:
Wednesday, August 4: Had a runny nose and slight cough
Thursday, August 5: Cranio-Sacral Therapy helped by letting the runny nose run some more! Mom kept wiping nose! Slight fever in the evening. Natural remedy was to wipe me with warm towel soaked in water and vinegar. Fever went away.
Friday, August 6: Still had a runny nose. Cough didn’t sound too good. Slight fever in the evening. As temperature rose, seizures manifested with greater intensity. Homeopathic remedy was changed to get rid of fever. Cuprum was addressing the seizures but febrile seizures had to be addressed. Sponge bath with smelly vinegar again brought fever down.
Saturday, August 7: Fever gone, no runny nose, cough started to sound like a bark. Nebulizing with salinase.
Sunday, August 8: Was barking by now. Vomited everything she drank with some phlegm coming out. Fever started to slowly rise. Doctor came for a home visit. Diagnosed Pneumonia. Doctor stayed until fever went below 38 and gave warning signs if hospital was a must. Ate had risks of allergic reactions to medications (which she had at 6 months) and all vaccines have been moved to a later date because of neurological condition so immune system may not be able to handle injections and medications. Febrile seizures still there, homeopathic remedies changed again.
Monday, August 9 Anthony Racho’s birthday: Early morning fever suddenly shot up (probably to 40). Body felt cold, fingers turned blue, lips turned blue, eyes rolling up, may have lost oxygen to the brain, shallow and fast breathing, rushed to the emergency room. Oxygen support immediately given, heart rate above normal, respiratory rate way above normal. Felt like she was running a marathon. Ate’s lungs to begin with are weaker compared to normal lungs. Nurses screwed up the oxygen support and Ate inhaled some water to her already weak and tired lungs. Parents remained calm. Anti-biotics given through i.v. after skin testing showed no adverse reaction to medications. Ate learned to get mad. For the first time in her life she cried of frustration and pain (except for the violent seizures she had before) because of the many needles. Slept most of the day. A few infantile spasms for the day. Asked for Anthony to intercede in heaven. Anthony is Mommy's older brother who went to heaven when he was just 9 years old because of brain cancer.
Tuesday, August 10: Fever went down. Lungs not yet clear. Respiratory rate still too fast. Breathing shallow and fast. Slept most of the day. Cannot eat/drink yet, on i.v., stomach continues to churn so new meds given to avoid ulcer. Blood sugar tests with needles continue. Ate recognizes the nurses she doesn’t like (those who poke her) and those she likes (those who massage her back with this ridiculously expensive gadget to loosen the phlegm). Ate is very tired and losing weight. Neurologist came to see Anya and not concerned with the seizures but with the significant weight loss. Ate needs to gain 4 kilos asap. Ant-tart remedy given.
Wednesday, August 11: Fever was gone. Heart rate much better. Respiratory rate still fast. Breathing fast and shallow. Had more waking hours. Was carried during those waking hours but couldn’t move around much because of all the things injected in her including the oxygen support.
Thursday, August 12: Xray done in the morning showed significant loss of phlegm but not enough to send her home. Steroids given through i.v. to open pathways of lungs. Ate must eat today. Respiratory rate improved within the day and Ate had good chance of avoiding tube feeding. It was a matter of how long her strength would last from the time she got sick vs. how long before the medications would take effect. Good thing her strength is still there! Many prayer warriors!
Friday, August 13: Are we going home soon?
Email update: Ate was able to drink milk from the bottle! She did not need the 10 inch tube down her throat straight to her tummy! After 5 days of no food/milk it was a MUST for her to eat today. And thank God she did not need the tube! She drank from the bottle without aspirating and without compromising her breathing!
She still has oxygen assistance but it is slowly being decreased and it seems she is able to handle it.
She still has phlegm in her lungs but also decreasing. The steroids (given to open up pathways for phlegm to get out) is also being decreased.
Her milk intake is also slowly being increased since she can't gulp down 9oz like she used to. But she'll get there eventually.
Hopefully she will be discharge by Sunday morning.
Saturday, August 14: Still could not go home but oxygen support removed and Ate is able to breath on her own with enough oxygen levels in her body. She drank some more milk. The i.v. was transferred to her leg. Still saw 2 infantile spasms today.
Sunday, August 15 Feast of the Assumption of Our Lady: Mama Mary, please let Ate go home today! She had better plans – we did not see any infantile spasms or seizures today! We stayed on to finish the 7 days of anti-biotics. Mommy couldn’t resist and spent half the day with Ate and wore a mask the whole time! Mommys doctor ordered her to stay away – took anti-biotics and pro-biotics.
Monday, August 16: Finally going home today! Daddy was getting tired from his day and night shifts at the hospital and was lacking lots of sleep. Took a while before everything was settled with the cashier. Upon arriving at Oma and Wowo’s house to pick up some things, Ate was smiling and cooing with excitement. She knew where she was! And when we were finally at home with Mommy and Daddy in bed, Ate was rolling on her bed and was glad to be home!
Monday, August 2, 2010
Looking for Breastmilk Donations!
Hi everyone!
Ate needs more breastmilk. Below is an email we sent several weeks ago and we got some breastmilk donations then. Thank you to all who shared breastmilk! Ate cannot take formula and animal milk... So breastmilk keeps her going!
I boldy ask for human breastmilk donations for my daughter Ate. If you know anyone who has some to spare, we are willing to do pick-up of the frozen breastmilk and I will just give them breastmilk storage bags in exchange.
Ate is 1 year old and has been on breastmilk except for her 6th month when I supplemented with formula. The formula aggravated her seizures and two child neurologist, one pedia-nutritionist, biomed advised not to go with formula. Her seizure control improved when we went back to breastmilk full time (along with other remedies and therapy that we did and still do). We have also put Ate on a GF/CF/SY (gluten-free/ casein-free/ soy-free) diet. So fresh cows milk, goats milk, soy milk and other milks are to be avoided. While there is no scientific evidence that these milks will make her conditions worse, we would rather not risk it. We decided that it's better she is underweight and steadily growing and gaining weight slowly, rather than be the correct weight for her age but have multiple seizures per day.
My milk supply has been very low and practically gone. My body can't seem to handle it now that I am already 3 (now 4) months pregnant with our second baby. I know my body will prioritize giving the needed nutrients to my baby inside, then next would be the breastmilk for Ate, then last would be nutrients needed by my own body. My ob-gyne and nutritionist/ob-gyne confirmed this with me.
While several moms are able to breastfeed their child until they are 8 months pregnant and eventually do tandem breastfeeding, I don't think my body will allow that. When I do have breastmilk again after giving birth to our second baby, I will be giving breastmilk to Ate - with the youngest baby always the priority. She will be receiving colostrum which would do her a lot of wonders.
So Ate just needs a supply of human breastmilk from now until January 2011. She won't be needing as much as a 3 month old baby since she is already eating solids and already 1 year old. But nevertheless, human breastmilk will help her a lot. I should be able to coordinate with moms since I can't get all the breastmilk stored in our tiny freezer all at once.
Please forward this to breastfeeding moms if you know of any. I won't have much to offer them but my gratitude, constant prayers and... breastmilk storage bags. We live in Paranaque so it would be great if the moms live nearby, although we are willing to travel further to get breastmilk for Ate. Her weekly therapy is in Greenhills so we can also collect breastmilk there, my sister-in-law lives in Pasig and we see each other once a week so we can also get breastmilk in that area. And Ate's dad works in Makati so we can also pick-up there. Just a lot of coordination is needed since we all know breastmilk has to stay frozen until it is ready for consumption otherwise it goes to waste.
Again, thank you for your support! Ate is doing better now. We went to a children's party that was so noisy and we got a lot of good reaction from her even without hearing aids. We really believe she will normalize one day.
Ate needs more breastmilk. Below is an email we sent several weeks ago and we got some breastmilk donations then. Thank you to all who shared breastmilk! Ate cannot take formula and animal milk... So breastmilk keeps her going!
I boldy ask for human breastmilk donations for my daughter Ate. If you know anyone who has some to spare, we are willing to do pick-up of the frozen breastmilk and I will just give them breastmilk storage bags in exchange.
Ate is 1 year old and has been on breastmilk except for her 6th month when I supplemented with formula. The formula aggravated her seizures and two child neurologist, one pedia-nutritionist, biomed advised not to go with formula. Her seizure control improved when we went back to breastmilk full time (along with other remedies and therapy that we did and still do). We have also put Ate on a GF/CF/SY (gluten-free/ casein-free/ soy-free) diet. So fresh cows milk, goats milk, soy milk and other milks are to be avoided. While there is no scientific evidence that these milks will make her conditions worse, we would rather not risk it. We decided that it's better she is underweight and steadily growing and gaining weight slowly, rather than be the correct weight for her age but have multiple seizures per day.
My milk supply has been very low and practically gone. My body can't seem to handle it now that I am already 3 (now 4) months pregnant with our second baby. I know my body will prioritize giving the needed nutrients to my baby inside, then next would be the breastmilk for Ate, then last would be nutrients needed by my own body. My ob-gyne and nutritionist/ob-gyne confirmed this with me.
While several moms are able to breastfeed their child until they are 8 months pregnant and eventually do tandem breastfeeding, I don't think my body will allow that. When I do have breastmilk again after giving birth to our second baby, I will be giving breastmilk to Ate - with the youngest baby always the priority. She will be receiving colostrum which would do her a lot of wonders.
So Ate just needs a supply of human breastmilk from now until January 2011. She won't be needing as much as a 3 month old baby since she is already eating solids and already 1 year old. But nevertheless, human breastmilk will help her a lot. I should be able to coordinate with moms since I can't get all the breastmilk stored in our tiny freezer all at once.
Please forward this to breastfeeding moms if you know of any. I won't have much to offer them but my gratitude, constant prayers and... breastmilk storage bags. We live in Paranaque so it would be great if the moms live nearby, although we are willing to travel further to get breastmilk for Ate. Her weekly therapy is in Greenhills so we can also collect breastmilk there, my sister-in-law lives in Pasig and we see each other once a week so we can also get breastmilk in that area. And Ate's dad works in Makati so we can also pick-up there. Just a lot of coordination is needed since we all know breastmilk has to stay frozen until it is ready for consumption otherwise it goes to waste.
Again, thank you for your support! Ate is doing better now. We went to a children's party that was so noisy and we got a lot of good reaction from her even without hearing aids. We really believe she will normalize one day.
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