Eloi: "Don't worry Nanay, I will take care of Isay when I get older."
Sometimes being a brother is even better than being a superhero. ~Marc Brown
Monday, December 27, 2010
Thursday, December 09, 2010
Isabella's First Year
I cannot believe that Isabella is a year old. Time flew when my son was an infant, especially since you measure a baby's first year of life in terms of weeks and months.... seeing how different each week is for the first three months since birth and how each month is soo different than the last for the succeeding ones. Though I cannot especially say the same thing with my Isay, time essentially did flew by even if developmentally she has been in the 0 to 3 month range for quite some time now... this time though it was measured by the many medical appointments we've been to, the many therapy sessions we’ve attended, and the many specialists that we have discussed things with... most importantly seeing how one day, no matter how eye straining-ly small it is, is different from the last.
I can say that it has been an individually unique experience raising each of my children, and Isabella has been one that has stretched the limits of what we have come to understand on this lifetime.
Isabella currently weighs about 12.5 lbs. She eats semi solids food and can tolerate about 30 mls of food per feeding and then we give her about 50mls of formula. Even with the cleft repair, she still is volume sensitive and throw ups happen about 1-2 times a day, and sporadically, we would be blessed with none. Her current development has not changed much since the 11th month update. She was able to regain the skill of sitting with minimal support from an adult and/or the sitting with her supporting herself with her arms. She can tolerate supporting herself while in a sitting position much longer now. Her repertoire of sounds now includes shrieks on occasion, and, unfortunately, we still have not heard her do a “ba-ba-ba” or a “ma-ma-ma”. Lately, when she is put on her belly and she pushes herself up, she wiggles her feet and she pivots her body, though it may seem unintentional, eventually she will most likely make her body pivot to face where she wants to go. I'm hoping that by this same time next year, I can say that my daughter is already crawling.
As I wonder what the next year would bring my daughter, I find myself in a place of HOPE. I hope that life will be kind to her, and that she will continually grow beautifully, and that she will be truly happy, but most of all… that she will feel loved… because she is.
To read on Isabella's previous developmental update, click here
Monday, November 22, 2010
The Cleft Repair Surgery Story and Other Things
Isabella was an ounce shy of 12 pounds on the day of her surgery and measures 29 inches.
Day 1:
600 am we arrived at the hospital
730 we were let in and prepared for surgery
800am doctors gave us the ok to give her daily dose of Keppra
915 we kissed her goodbye and she went with the anesthesiologist to the OR
130 She was wheeled to her room.
While the doctors reassured us that everything went well and that she was perfect and that there was no drama in the OR, seeing her with a swollen bloody mouth and with her face quite bloated from the general anesthesia was difficult for me, the mom. But I had no other option but to trust the doctors that everything went well.
The doctors told us to make sure that she does not put her hands in her mouth, which is really going to make her angry because “hands-in-mouth” is a recent soothing strategy she has recently self-discovered. Issues with acid reflux also raises concern so medication to help with throw-ups (at least for the next 2 weeks)are necessary, with the side effects being that she will be drowsy and sleeping a lot. Doctor also advised us to stick with tube feeding and skip the semi solids for the next 10 days. All these sounds manageable except that my husband and I both feel that since she is uncomfortable she might not be sleeping well and she’d be fussy and stressed and tired which might trigger a seizure.
Instead of giving her a regular room, the medical team has decided to place her in the pediatric ICU for one night just to be on the safe side. The doctors and nurses said that we do not need to worry about having her in the PICU since she’d only be in for a night and and out the next day. We were going to tell the doctors to give us an extra night of stay, even if she was placed in a regular room, as long as we get to stay in the hospital for one more day. The doctors kept trying to convince us that this won’t be necessary. So, though unsure, we tried to be appeased with what the doctors were telling us.
She was not able to eat anything the first day. She had an IV, and did a small bolus of pedialyte via g tube.
Day 2:
1200 am Isabella had a slight fever.
1230 am she started having a cluster of epileptic seizures
245am seizures were finally controlled
The PICU team controlled the seizure by giving her Ativan and eventually some Diazepam. This is on top of her daily dose of Keppra that, obviously was not enough to control her seizures, which are most likely the result of all the stress that came with the surgery. In the midst of her seizures, she stopped breathing, and intubation was necessary.
Isabella was heavily sedated and given extra supervision. She had 2 nurses attending to her at bedside. While it is good that she gets extra care, it is also worrisome for us because it signals the delicate nature of our daughter’s condition. She was hooked on a breathing machine as she was not breathing on her own.
11am according to the PICU team they will start weaning her off the breathing machine’s support. The settings were changed to low, but machine kicks in to provide the oxygen her body needs. Her breathing was erratic.
1pm while still heavily sedated still, she coughed out her breathing tube and decided unconsciously to extubate her self. Doctors and nurses rushed to her bedside. However, for reasons unexplainable, including how she managed to cough out her tube when it is far down her trachea, she started breathing ON HER OWN. Re-intubation was not necessary
2pm she had her intravenous dose of Kepra on top of the other medicines such as antibiotics and those that control pain, calm her and sedate her. Neuro team decided to double the dose of the anti seizure meds.
Throughout the rest of the afternoon Isabella will have brief moments where she would open her eyes and move. She did not smile nor looked at us, but I know she knows we are just there. Still no real food for her, and all she got for nourishment was dextrose.A check of her blood oxygen level was done and it yielded posiive results.
Day 3:
130 am Isabella had another seizure that lasted 5 minutes and was controlled by Ativan. This time we did not receive a phone call. We were notified when we got to the hospital at…
630am Isabella looks much better. The swelling of her lips have gone down, but the bruises on the sides of her mouth was still visible. We understand that bruises take awhile before they become less visible. She is also not heavily sedated anymore. She didn’t cry, but raised her arms when she woke up so she can get held. She started looking around the room and would sometimes like to be propped sitting so she can take a better look around. She also didn’t need 2 nurses to take care of her.
11am We met the doctors at rounds and we were told that we would be staying another night in the PICU to monitor seizure activity for the next 24 hour period since her last seizure. They still need to discuss with the team if the antiseizure meds dose need to be readjusted. CFT docs suggested we do not feed her by mouth for risk of aspiration, at least for the next 10 days. There is a chance we will be transferred to a regular room tomorrow and stay until Monday, if seizure activity is controlled.
Throughout the day we can see the Isabella is slowly but steadily getting back to her regular self. She has not smiled but would start looking at us and wanting to be held, touched or talked to. She also started making the Mmmmm sounds she usually does and would stare at her hand and stick out her three fingers. Although docs said she cannot put anything in her mouth, we let her lick the back of her hand (technically it was not “in” her mouth anyways… bad mommy!).
There was also talk about doing another MRI, and GI doctor recommended that we giver her acid reflux meds to help take care of the surgery site if she throws up. She also started her round the clock feeds, that were adjusted to 25 mls per hour to give her a gradual start.
We hoped she does well over night. Things have started looking up.
Day 4:
We woke up early then went to Sunday mass then right after, we went straight to the hospital. The very first question we asked the PICU nurse was if she had a seizure that night… she didn’t.
We started asking questions regarding discharge. They said that she might still need to stay a night but will most likely get transferred to a regular floor room if a room becomes available. Otherwise, if all goes well, she stays one more night here in the PICU then we can go home on Monday.
From the Neuro standpoint, we were told that her Kepra dose is now 2mls to be given twice a day. That seemed to have controlled the seizures, even if they have reason to believe that she had a high likelihood to have had a seizure because of the surgery. We had a discussion with the doctors regarding her blinking/jerking movements. We discussed the difference of neurological tics and myoclonic jerks. They did add, and stressed also, that as long as it does not hinder development, cause her to regress or to stop progressing at the rate she is already going, it should not be a cause of concern. Most likely her blinking/jerking is a myoclonic jerk and tics would come out, if she is going to have any, around the age of 1 and is most likely triggered by anxiety such as that of feeling awkward in a social situation, among other things that may cause a person to feel anxious.
We were also able to clarify with the neuro docs regarding mentioning the possible need for another MRI, they said that they have discussed it as a team and find no need for it right now, but they may need to request for an EEG. We told them that she has one scheduled in January. But they are going to put an order in to see if it can be done tomorrow morning since we will be here anyways. When they did the EEG on Day2 of our hospital stay, it showed irregular spikes in her brain activity which is most likely a result of her being administered ativan, and since she has not been sedated for more than 24 hours and has had no seizure activity, an EEG will most likely record better brain activity.
The CFT Doctor said we can try giving her semi solid foods via mouth to see how she does. They said to definitely not feed her via spoon… at least not yet. Her first semisolid food since Wednesday is a very yummy 25 ml serving of strained cream soup. She did not like it. She didn’t finish it. She only took about 5mls. Maybe because it is more like gravy and it would be better is it came with chicken. So I gave her some vanilla pudding instead and she welcomed that with an open mouth and an arm swinging, leg kicking dance. However, 20mls later, she threw up… all of the 25 mls and then some.
She did get nourishment via the kangaroo pump and she showed us that she did by passing out her very fist poo. Yey!
She has not been crying like how she used to. It is not so much how her cry sounds, but it seems that she is trying to suppress sounds coming from out of her mouth. She has been awake a lot today, would do occasional “Hmmms”, but she does not sound as frequently as she used to. Perhaps she is still trying to figure out how to move things around in her mouth.
She smiled twice to nanay today and she also gave a little one sided lip smile to her nurse. She also took a bath. Her BNrother and some froends also paid her a visit. Eloi got to hold her and play with her for a little bit.
I know that my son is trying to act all grown up and okay about this whole mommy-daddy-sister-all-in-the-hospital deal, and though a big part me wants to be with me want to be with him at home and leave Isabella with the care of the nurses, or have him be absent from school and bring him with us here, I want him to still have that sense of "normalcy" in his life. I also do not want him to know or learn about "worry", at least not yet... as long as I can keep him from that cause there'd be plenty of time for worry when he grows up. He told us, right before he left the hospital, that he is sure that we aqre going home tomorrow. When we asked him how he knows this, he says it's because it's been 5 days since we've been here. I guess he had enough of all this "separation".
When we kissed her goodbye for that day, we sent a short little quiet prayer that all goes well throughout the night and that tomorrow we will all be going home.
Day 5
We were greeted at the hospital with a talk about possible discharge. The concerns that might prevent her from being discharged is that of her feeding. Their hope is that throughout the day, she will be able to taken in the volume of semi solids and milk the way she regularly does it at home. Although we know that there are concerns regarding throw up we told them that “throw-ups” are a regular part of our life. So, throw ups, though it may not be the general “norm”, it is OUR NORM.
The day went by and the doctors gave us their updates. CFT had nothing more for her except that we need to see them back for a post-op appointment 2 weeks post surgery which is technically only 11 days from today. Neuro says there is no need for an EEG and that we stick to our already set EEG and neuro appointment 2 months from now. Renal also sends their ok and her creatinin and potassium levels are all good. GI also says everything is going well, except for the not feeding by mouth, which for them is not a red flag concern at this point, afterall she just had surgery in the mouth.
The PICU team asked if we feel comfortable about bringing her home despite the semi-solid feeding issue… in unison, my husband and I replied with a yes. They did add that if we do not feel okay with it, we can stay one more night, and for a brief second we did hesitate, but we responded with a resounding “Nahhhh.”
We picked up her set of meds, signed some docs, the beeping machines were wheeled away, the beeping machine attachments were taken out, the IVs were also taken out, and after a couple of pee pee diapers, a poopy diaper, a cat-nap, a bolus feed, 3 hesitant smiles, and a dose of pain meds later… we were sent home.
…and that my friends, is our 5 day surgery story and other things.
She’s in good health and all ready to brave the cleft-combat. The procedures scheduled that day included checking ear tubes for both ears and possible ear tube replacement, possible draining of ear fluid and cleaning out of ear wax, this will be followed by repair. The doctors said that the whole procedure should only last about 2 hours, however, we had to wait for 4 hours before they let us see her again.
Day 1:
600 am we arrived at the hospital
730 we were let in and prepared for surgery
800am doctors gave us the ok to give her daily dose of Keppra
915 we kissed her goodbye and she went with the anesthesiologist to the OR
130 She was wheeled to her room.
The doctors told us to make sure that she does not put her hands in her mouth, which is really going to make her angry because “hands-in-mouth” is a recent soothing strategy she has recently self-discovered. Issues with acid reflux also raises concern so medication to help with throw-ups (at least for the next 2 weeks)are necessary, with the side effects being that she will be drowsy and sleeping a lot. Doctor also advised us to stick with tube feeding and skip the semi solids for the next 10 days. All these sounds manageable except that my husband and I both feel that since she is uncomfortable she might not be sleeping well and she’d be fussy and stressed and tired which might trigger a seizure.
Instead of giving her a regular room, the medical team has decided to place her in the pediatric ICU for one night just to be on the safe side. The doctors and nurses said that we do not need to worry about having her in the PICU since she’d only be in for a night and and out the next day. We were going to tell the doctors to give us an extra night of stay, even if she was placed in a regular room, as long as we get to stay in the hospital for one more day. The doctors kept trying to convince us that this won’t be necessary. So, though unsure, we tried to be appeased with what the doctors were telling us.
She was not able to eat anything the first day. She had an IV, and did a small bolus of pedialyte via g tube.
8pm she had her daily dose of Kepra on top of the pain meds and antibiotics
Day 2:
1200 am Isabella had a slight fever.
1230 am she started having a cluster of epileptic seizures
245am seizures were finally controlled
The PICU team controlled the seizure by giving her Ativan and eventually some Diazepam. This is on top of her daily dose of Keppra that, obviously was not enough to control her seizures, which are most likely the result of all the stress that came with the surgery. In the midst of her seizures, she stopped breathing, and intubation was necessary.
Isabella was heavily sedated and given extra supervision. She had 2 nurses attending to her at bedside. While it is good that she gets extra care, it is also worrisome for us because it signals the delicate nature of our daughter’s condition. She was hooked on a breathing machine as she was not breathing on her own.
11am according to the PICU team they will start weaning her off the breathing machine’s support. The settings were changed to low, but machine kicks in to provide the oxygen her body needs. Her breathing was erratic.
1pm while still heavily sedated still, she coughed out her breathing tube and decided unconsciously to extubate her self. Doctors and nurses rushed to her bedside. However, for reasons unexplainable, including how she managed to cough out her tube when it is far down her trachea, she started breathing ON HER OWN. Re-intubation was not necessary
2pm she had her intravenous dose of Kepra on top of the other medicines such as antibiotics and those that control pain, calm her and sedate her. Neuro team decided to double the dose of the anti seizure meds.
Throughout the rest of the afternoon Isabella will have brief moments where she would open her eyes and move. She did not smile nor looked at us, but I know she knows we are just there. Still no real food for her, and all she got for nourishment was dextrose.A check of her blood oxygen level was done and it yielded posiive results.
Day 3:
130 am Isabella had another seizure that lasted 5 minutes and was controlled by Ativan. This time we did not receive a phone call. We were notified when we got to the hospital at…
630am Isabella looks much better. The swelling of her lips have gone down, but the bruises on the sides of her mouth was still visible. We understand that bruises take awhile before they become less visible. She is also not heavily sedated anymore. She didn’t cry, but raised her arms when she woke up so she can get held. She started looking around the room and would sometimes like to be propped sitting so she can take a better look around. She also didn’t need 2 nurses to take care of her.
11am We met the doctors at rounds and we were told that we would be staying another night in the PICU to monitor seizure activity for the next 24 hour period since her last seizure. They still need to discuss with the team if the antiseizure meds dose need to be readjusted. CFT docs suggested we do not feed her by mouth for risk of aspiration, at least for the next 10 days. There is a chance we will be transferred to a regular room tomorrow and stay until Monday, if seizure activity is controlled.
Throughout the day we can see the Isabella is slowly but steadily getting back to her regular self. She has not smiled but would start looking at us and wanting to be held, touched or talked to. She also started making the Mmmmm sounds she usually does and would stare at her hand and stick out her three fingers. Although docs said she cannot put anything in her mouth, we let her lick the back of her hand (technically it was not “in” her mouth anyways… bad mommy!).
There was also talk about doing another MRI, and GI doctor recommended that we giver her acid reflux meds to help take care of the surgery site if she throws up. She also started her round the clock feeds, that were adjusted to 25 mls per hour to give her a gradual start.
We hoped she does well over night. Things have started looking up.
Day 4:
We woke up early then went to Sunday mass then right after, we went straight to the hospital. The very first question we asked the PICU nurse was if she had a seizure that night… she didn’t.
We started asking questions regarding discharge. They said that she might still need to stay a night but will most likely get transferred to a regular floor room if a room becomes available. Otherwise, if all goes well, she stays one more night here in the PICU then we can go home on Monday.
From the Neuro standpoint, we were told that her Kepra dose is now 2mls to be given twice a day. That seemed to have controlled the seizures, even if they have reason to believe that she had a high likelihood to have had a seizure because of the surgery. We had a discussion with the doctors regarding her blinking/jerking movements. We discussed the difference of neurological tics and myoclonic jerks. They did add, and stressed also, that as long as it does not hinder development, cause her to regress or to stop progressing at the rate she is already going, it should not be a cause of concern. Most likely her blinking/jerking is a myoclonic jerk and tics would come out, if she is going to have any, around the age of 1 and is most likely triggered by anxiety such as that of feeling awkward in a social situation, among other things that may cause a person to feel anxious.
We were also able to clarify with the neuro docs regarding mentioning the possible need for another MRI, they said that they have discussed it as a team and find no need for it right now, but they may need to request for an EEG. We told them that she has one scheduled in January. But they are going to put an order in to see if it can be done tomorrow morning since we will be here anyways. When they did the EEG on Day2 of our hospital stay, it showed irregular spikes in her brain activity which is most likely a result of her being administered ativan, and since she has not been sedated for more than 24 hours and has had no seizure activity, an EEG will most likely record better brain activity.
The CFT Doctor said we can try giving her semi solid foods via mouth to see how she does. They said to definitely not feed her via spoon… at least not yet. Her first semisolid food since Wednesday is a very yummy 25 ml serving of strained cream soup. She did not like it. She didn’t finish it. She only took about 5mls. Maybe because it is more like gravy and it would be better is it came with chicken. So I gave her some vanilla pudding instead and she welcomed that with an open mouth and an arm swinging, leg kicking dance. However, 20mls later, she threw up… all of the 25 mls and then some.
She did get nourishment via the kangaroo pump and she showed us that she did by passing out her very fist poo. Yey!
She has not been crying like how she used to. It is not so much how her cry sounds, but it seems that she is trying to suppress sounds coming from out of her mouth. She has been awake a lot today, would do occasional “Hmmms”, but she does not sound as frequently as she used to. Perhaps she is still trying to figure out how to move things around in her mouth.
She smiled twice to nanay today and she also gave a little one sided lip smile to her nurse. She also took a bath. Her BNrother and some froends also paid her a visit. Eloi got to hold her and play with her for a little bit.
I know that my son is trying to act all grown up and okay about this whole mommy-daddy-sister-all-in-the-hospital deal, and though a big part me wants to be with me want to be with him at home and leave Isabella with the care of the nurses, or have him be absent from school and bring him with us here, I want him to still have that sense of "normalcy" in his life. I also do not want him to know or learn about "worry", at least not yet... as long as I can keep him from that cause there'd be plenty of time for worry when he grows up. He told us, right before he left the hospital, that he is sure that we aqre going home tomorrow. When we asked him how he knows this, he says it's because it's been 5 days since we've been here. I guess he had enough of all this "separation".
When we kissed her goodbye for that day, we sent a short little quiet prayer that all goes well throughout the night and that tomorrow we will all be going home.
Day 5
We were greeted at the hospital with a talk about possible discharge. The concerns that might prevent her from being discharged is that of her feeding. Their hope is that throughout the day, she will be able to taken in the volume of semi solids and milk the way she regularly does it at home. Although we know that there are concerns regarding throw up we told them that “throw-ups” are a regular part of our life. So, throw ups, though it may not be the general “norm”, it is OUR NORM.
The day went by and the doctors gave us their updates. CFT had nothing more for her except that we need to see them back for a post-op appointment 2 weeks post surgery which is technically only 11 days from today. Neuro says there is no need for an EEG and that we stick to our already set EEG and neuro appointment 2 months from now. Renal also sends their ok and her creatinin and potassium levels are all good. GI also says everything is going well, except for the not feeding by mouth, which for them is not a red flag concern at this point, afterall she just had surgery in the mouth.
The PICU team asked if we feel comfortable about bringing her home despite the semi-solid feeding issue… in unison, my husband and I replied with a yes. They did add that if we do not feel okay with it, we can stay one more night, and for a brief second we did hesitate, but we responded with a resounding “Nahhhh.”
We picked up her set of meds, signed some docs, the beeping machines were wheeled away, the beeping machine attachments were taken out, the IVs were also taken out, and after a couple of pee pee diapers, a poopy diaper, a cat-nap, a bolus feed, 3 hesitant smiles, and a dose of pain meds later… we were sent home.
…and that my friends, is our 5 day surgery story and other things.
Saturday, November 20, 2010
What Is Special?
I feel that as my son grows up, he will have his own journey in coping with having a sister with special needs. What I am not certain of is if he will go through the stages of grief like any parent coping with the reality of raising a special child. Will he go through Denial? Anger? Bargaining? Depression? Then, eventually Acceptance? Is he currently going through one of these stages? Or, with the pure nature of his child-soul and child-love, he will jump straight to acceptance? While it may be pointless to think of these things right now, they do cross my mind, but my biggest hope is that he copes with the reality of it much better than I did (I am?).
As I have written before in a previous post/s, we have exposed Eloi to children with special needs ever since he was small, and we have had conversations with him telling him about children being “special” and his sister being “special” I know that in that little mind of his, he is still trying to understand why his sister is “different” and what the word special really means.
A big part of me wants him to not see that his sister is “different”. My wish is to be able to raise my children without the conscious thought that “this is my special child” and “this is my normal child”… they are my children, period. I don’t want him to try and compare her with other children nor do I want to run a household parenting each of my children differently, with the other one getting “special treatment” because of her “special needs”. My wish for Eloi is to look at Isabella as his sister and not be defined as his “special sister”, with the reference of the word special being “different”, “irregular”, “abnormal”, “non standard”, “uncharacteristic”, “strange”, “deviant”, “weird”… if ever that it is unavoidable for her to be defined “special”, I’d want the context of the word “special” be that of being “unique”… just like each and everyone of us.
But what is special? And how do you really talk about it with a 6 year old, in a way that does not degrade nor show division? How do you talk about it with a child without crossing that line? How do I go about discussing what is special and ave him understand the way I wish for him to understand?
Then, one morning on our way to school, we had this conversation.
Eloi: Nanay I have a classmate and it is his birthday tomorrow. It is also his brother’s, who is in a different 1st grade class at our school, birthday. Nanay, how come his brother and him are the same age and they have the same birthday?
Nanay: Because they are twins.
Eloi: But how come they don’t look the same?
Nanay: Not all twins are identical or looking the same. Anytime a mommy has 2 babies in her belly, those babies are twins. Sometimes there’s even a boy and a girl twin.
Eloi: But how come the one in my class does not talk too much, and the other one talks a lot and he does not really listen to us well when we talk to him. He just likes to talk over and over about cellphones.
Nanay: Because that is what he wants to talk about.
Eloi: But he talks about it all the time. It's the same thing all the time. It's always about cellphones.
Nanay: (I can sense some annoyance in his tone)Why don't you try talking to him about something else?
Eloi: I do, but he only wants to talk about cellphones.
Nanay: Maybe it's just because he likes cellphones so much and people like to talk about the things they like. Much like the time you liked talking about wrestling, or Starwars, or Legos. He likes cellphones so he likes to talk about cellphones.
Eloi: He is weird.
Nanay: ( in my head > OMG, the words he learns from his peers!) No. Don't say that. He's not weird. He is special (The boy has Apsergers), and that is okay. You know, much like your sister is special. Do you think she's weird too?
Eloi: No! But Isay does not talk a lot.
Nanay: They are both special but in a different way.
Eloi: Oh, so you mean something is wrong with him?
Nanay: Why do you say that? Nothing is wrong with him. Cause when you say that, it's almost like saying that when we say your sister is special, something is wrong with her. Do you think something is wrong with your sister?
Eloi: No! (very defensively) She’s okay.
Nanay: Yes. She is doing ok. She is just going to take longer than other children her age to learn things because God made her that way. Like your classmate’s brother talks a lot because God made him that way. Do you think anything is wrong with that?
Eloi: Noooo! Nothing is wrong with that. God made them that way.
Quiet Pause…
Eloi: Am I special Nanay?
Nanay: Why do you ask that?
Eloi: Because I talk a lot.
Nanay: Yes you are special. You talk a lot because you have a lot of ideas in your head and that is okay because God made you that way. All of us are special.
Eloi: So, I’m special cause I talk a lot, and Isay is special because she is small and cries a lot, and you’re special ‘cause you work a lot, and Tatay is special cause he eats a lot.
Nanay: (Chuckle) Yes.
Eloi: We are all special, ‘cause God made us this way.
Nanay: Yes, ALL of us are special.
As I have written before in a previous post/s, we have exposed Eloi to children with special needs ever since he was small, and we have had conversations with him telling him about children being “special” and his sister being “special” I know that in that little mind of his, he is still trying to understand why his sister is “different” and what the word special really means.
A big part of me wants him to not see that his sister is “different”. My wish is to be able to raise my children without the conscious thought that “this is my special child” and “this is my normal child”… they are my children, period. I don’t want him to try and compare her with other children nor do I want to run a household parenting each of my children differently, with the other one getting “special treatment” because of her “special needs”. My wish for Eloi is to look at Isabella as his sister and not be defined as his “special sister”, with the reference of the word special being “different”, “irregular”, “abnormal”, “non standard”, “uncharacteristic”, “strange”, “deviant”, “weird”… if ever that it is unavoidable for her to be defined “special”, I’d want the context of the word “special” be that of being “unique”… just like each and everyone of us.
But what is special? And how do you really talk about it with a 6 year old, in a way that does not degrade nor show division? How do you talk about it with a child without crossing that line? How do I go about discussing what is special and ave him understand the way I wish for him to understand?
Then, one morning on our way to school, we had this conversation.
Eloi: Nanay I have a classmate and it is his birthday tomorrow. It is also his brother’s, who is in a different 1st grade class at our school, birthday. Nanay, how come his brother and him are the same age and they have the same birthday?
Nanay: Because they are twins.
Eloi: But how come they don’t look the same?
Nanay: Not all twins are identical or looking the same. Anytime a mommy has 2 babies in her belly, those babies are twins. Sometimes there’s even a boy and a girl twin.
Eloi: But how come the one in my class does not talk too much, and the other one talks a lot and he does not really listen to us well when we talk to him. He just likes to talk over and over about cellphones.
Nanay: Because that is what he wants to talk about.
Eloi: But he talks about it all the time. It's the same thing all the time. It's always about cellphones.
Nanay: (I can sense some annoyance in his tone)Why don't you try talking to him about something else?
Eloi: I do, but he only wants to talk about cellphones.
Nanay: Maybe it's just because he likes cellphones so much and people like to talk about the things they like. Much like the time you liked talking about wrestling, or Starwars, or Legos. He likes cellphones so he likes to talk about cellphones.
Eloi: He is weird.
Nanay: ( in my head > OMG, the words he learns from his peers!) No. Don't say that. He's not weird. He is special (The boy has Apsergers), and that is okay. You know, much like your sister is special. Do you think she's weird too?
Eloi: No! But Isay does not talk a lot.
Nanay: They are both special but in a different way.
Eloi: Oh, so you mean something is wrong with him?
Nanay: Why do you say that? Nothing is wrong with him. Cause when you say that, it's almost like saying that when we say your sister is special, something is wrong with her. Do you think something is wrong with your sister?
Eloi: No! (very defensively) She’s okay.
Nanay: Yes. She is doing ok. She is just going to take longer than other children her age to learn things because God made her that way. Like your classmate’s brother talks a lot because God made him that way. Do you think anything is wrong with that?
Eloi: Noooo! Nothing is wrong with that. God made them that way.
Quiet Pause…
Eloi: Am I special Nanay?
Nanay: Why do you ask that?
Eloi: Because I talk a lot.
Nanay: Yes you are special. You talk a lot because you have a lot of ideas in your head and that is okay because God made you that way. All of us are special.
Eloi: So, I’m special cause I talk a lot, and Isay is special because she is small and cries a lot, and you’re special ‘cause you work a lot, and Tatay is special cause he eats a lot.
Nanay: (Chuckle) Yes.
Eloi: We are all special, ‘cause God made us this way.
Nanay: Yes, ALL of us are special.
Rub-A-Dub-Dub
We noticed that Isabella has been more "aware" since the seizure and since she was put on meds. It seems that the only skill she lost (which can happen because of the seizure) is the most recent one she learned, that is sitting with some support from an adult. It looks like her body is still somewhat physically weak from all that brain-wave-bouncing. I believe that there is no reason for her to not regain that skill. It will just take a little bit of time.
A new thing she recently learned is that when she is sleepy she can make herself not fall asleep. While most babies will cry and be fussy-grumpy, my Isabella would smile... even laugh.
Watch this short clip of me rubbing her head to help her fall asleep.
A new thing she recently learned is that when she is sleepy she can make herself not fall asleep. While most babies will cry and be fussy-grumpy, my Isabella would smile... even laugh.
Watch this short clip of me rubbing her head to help her fall asleep.
Seizure Shenanigans
It was a regular Sunday morning at the Catiis residence. The sun was out and the breeze is nice and cool. Everyone was abuzz and busy with their daily morning routine and ready to begin with what started off as a relatively relaxed day, until…
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.
Wednesday, November 10, 2010
The 11th Month
Current Stats:
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
We had the biggest scare of our life 2 days before her 11 month bday. She had her first big seizure. It all started with a staring/freezing episode then a small throw up, then staring and some jerking and some eye rolling. We know she has seizures but since the neurologist said that they were benign we were just waiting-out the seizure episode. However, 30 minutes later of staying frozen with occasional jerking and her eyes just rolled up and being unresponsive, we figured it was time to contact 911. While waiting for the paramedics to arrive she started to do tonic clonic movements and some stiffness. She also turned purple. She was rushed to the emergency room, intubated, and was given three separate doses of Ativan, but it was not enough to make the seizures stop. Eventually they got a hold of our neuro and the ER team was instructed to administer Diastat. Then eventually the seizing stopped. Her whole seizure episode lasted for about an hour and a half. The Stanford team came to get her and she stayed in the PICU overnight. She spiked a fever after the seizure and doctors needed to know if the reason she had a seizure was because she has an infection which also explains the fever. So they ordered a blood and urine culture but the results were a negative. So doctors said the fever was caused by the seizure and the cause of the seizure is unknown. Neurologist thinks it was just the time for her to have the epileptic seizures that is not uncommon to children with WHS. The doctor ordered daily doses of Keppra to control seizures. We have yet to see how the medicine affects her, but so far, Isabella seems to be back to her usual self, except that she seems to have lost the muscle strength to sit with minimal support from an adult. What is really important for us right now is to have the meds control the seizures and for us to NOT have to go through this big seizure scare ever again.
Renal Report
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Upcoming Medical Stuff
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
Renal Report
Kidney doctor says that her kidneys are close to normal functioning. We can try to give her a little bit of food rich in potassium such as potatoes, squash, avocados, and bananas. Another VCUG to check if her kidney reflux has resolved itself will be done around May of next year. Creatinine and potassium levels in her blood read normal.
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
To read about Isabella's previous developmental update, click here
Tuesday, October 26, 2010
How Can I Help It?
How can I not help looking at other girls and thinking, “I wanted a daughter to grow up into something like that”?
How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”
How can I not help but look at younger babies and see how developmentally far ahead they are?
How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”
How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.
How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?
How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?
How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?
How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?
How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.
How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?
How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.
How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.
How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?
How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?
How can I not but help to try and work through all this uncertainty and the not knowing what to do?
How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?
How can I not but help to shed some tears as I type this down?
How can I not but have to force to help myself every time I hit walls of moments like this?
How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.
And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?
How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.
How can I not help but to give in sometimes to the many complex emotions, such as right now, just to feel that cathartic release.
How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”
How can I not help but look at younger babies and see how developmentally far ahead they are?
How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”
How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.
How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?
How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?
How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?
How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?
How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.
How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?
How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.
How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.
How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?
How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?
How can I not but help to try and work through all this uncertainty and the not knowing what to do?
How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?
How can I not but help to shed some tears as I type this down?
How can I not but have to force to help myself every time I hit walls of moments like this?
How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.
And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?
How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.
How can I not help but to give in sometimes to the many complex emotions, such as right now, just to feel that cathartic release.
Saturday, October 16, 2010
A Temporary Loss of Perspective
I just realized that my Isabella stopped playing with sounds… she does not coo, or babble as much as she did. I realized that she hardly really babbled or cooed. She would however make sounds that seem like she is calling for us. But that was mostly it.
A lot of children with WHS are nonverbal…. So if my Isabella will grow up non verbal, it should not really surprise me. However, when I spoke to a friend of mine who is a speech pathologist regarding this babbling issues I have been having, she adamantly had to confirm my strong suspicions that my daughter would most likely fall into the non verbal category of WHS children. And as much as I knew about this possibility, I felt a pinch in my heart.
So, this weekend I found myself in a place where I was praying fervently…. In that moment of sincere and deep prayer, I was bargaining with God. I was trying to cut him a deal to perform a miracle and make the “speech happen”. Then I started crying.
I cried not because of pain…. I cried because for the first time, I understand the meaning and depth of the word “desperation”. I was in a very desperate place. I came to understand that “desperation” can so easily be mistaken for hope, however the underlying emotion between hope and desperation are entirely different emotions.
Forlorn hope aka desperation is losing focus of the good promises that lie in the future…. Positive hope is keeping things in perspective and having a happy and contented disposition… it is more than just optimism, it is believing, it is having faith, it is taking in that unknown future with a trust that is enveloped with spiritual grace.
I then stopped my bargaining process with the Lord. I came to realize that there is no need to bargain for anything. I get what I get and I should be content.
Why pray for a miracle?
My daughter is not sick.
A trade or bargain will not change things.
I don’t think that it could ever be possible to wake up one day and find my Isabella “normal”.
Nothing is wrong with having a daughter like mine.
Nothing is wrong with Isabella.
She is fine and she is happy and she will be who she is going to be and she will be okay.
Everything will be okay.
Why pray for a miracle?
Have I not completely accepted her?
I should by now.
I should have, by now, accepted my lot wholeheartedly.
Next time I find myself in a place of desperation… the miracle I would be praying for is for my complete conversion to acceptance.
I so desperately need that kind of miracle in times that I lose sight of positive hope.
Monday, October 04, 2010
The Crosses We Bear
A couple of years ago, I have this “convenient” relationship with god. I go to church when I feel like it and I pray when I find the time.
I do thank him for the luck and the blessings and the good tidings, but I really did not see him as the one who orchestrates the events in life. He is not the author of my life. I was the author of my own fate.… I used to believe that everything that I have reaped is because of what I have sown myself. God was merely a go to entity for times of crisis… major crises, when all hope is lost. He was an icon of hope… a symbol no different from Santa Claus, the Statue of Liberty, or a four leaf clover.
For many years, things came easy and we’ve been blessed by many things, but my spouse and I both felt that something was seemingly lacking… we both know that we need to nurture the spiritual aspect of our life, but we still kept choosing to be busy with other things. We kept putting off the nurturing of our spirit under a pile of things to do… and despite the knowledge of this need, we didn’t really think it was pressing enough to pay attention to right away. Our “spirit” was no different than another thing on our to do list that we needed to get done. “God”, was on our to do list, more specifically at the end of our to do list. We are guilty of putting god as our last priority that we will get to when we find the time…. Until a year ago, we eventually did.
A year ago my husband and I decided to participate in the Christian Life Program (CLP). We figured, ok its time. We told ourselves that since we do not have a major crisis in our life, “God”, however we may interpret him to be, will not be “judging” us because we only remembered him because we are in dire need. We figured that since we’ve been blessed we owed him at least that.
So we went to attend the CLP… “Friday” church as we called it. I was skeptic. I had all this mind noise and all these questions that challenge what was being said… I was preoccupied with what the speakers said that I found to be debatable. I would listen to the talks and take it in objectively, much like doing research or working on a course of study. Then, during one of the CLP sessions, while I was busy trying to block away all the mind noise, and asking myself “what am I doing here?” I found myself transfixed, on the picture of Jesus knocking on the door…. It was then that I realized that I was taking all the teaching the wrong way. I was looking at faith from the wrong perspective. Faith is not a matter of the “head”, it was a matter of the “heart”.
It was then that I felt a turning point whilst undergoing the CLP program. I have opened myself to the teachings. My son further motivated us to commit to finishing the program as he gets really excited about going to “Friday church”. We were able to attend the 3 modules, the 12 talks on Friday evenings after a hectic work week and me ALSO being PREGNANT at that time. But I didn’t mind… even though I was feeling extra tired from being pregnant, it became important to me…. For the first time, God was at the forefront of our daily life. Honestly, we found ourselves wondering why we didn’t let him in sooner. It was wonderful and we felt the immensity his love. There was nothing else that we needed. Everything was just going to be perfect from then onwards…. And so I thought….
Not long after we have completed the CLP… on November 13, a Friday, at my 36th week of pregnancy I received a phone call from my doctor. He said that the ultrasound we had a couple of days back revealed some concerns about our baby. He said that she has a hole in her heart. Eventhough we were worried, we know god is there…. and we prayed.
When we went for a more specialized ultrasound to have our baby’s heart checked, we were told by the perinatologist that there were concerns about my baby’s size, but most shockingly concerns also on the baby’s brain. They detected cysts. Again, eventhough we were more worried, we know god is there and we prayed.
We were then referred to Lucille Packard hospital in Stanford and met with a lot of specialists. And at an ultrasound we had there, they detected that my baby has multiple brain anomalies…. She has underdeveloped brain structures, brain cysts and some fluid. This was confirmed by fetal MRI scan, that then also added detection of a liver cyst, and concerns about the baby’s size. And eventhough a bigger worry was added on our list of worries, we still believe that god is there, and we prayed.
The doctors then told that a c section should be performed because of all these concerns. So on December 9, feeling not quite sure about how to feel about the anticipation of the birth of our baby, she was born. She weighed 4 lbs 3 oz. She had trouble breathing and was intubated, but not long after she managed to breathe on her own. She was also found to have a cleft palate. Again, we countered our worries in the belief that god is there and we continued to pray.
She stayed 17 days in the NICU and during her stay she was jaundiced and her weight went down to 3lbs 5 oz. Doctors kept poking her for many lab orders that were requested. She had an IV on her head. She had wires attached to her tiny body that were attached to these machines making all these beeping noises. It was a lot to take in… too much for a small baby…. Too much for a mother like me. They inspected every single thing that they could inspect. And eventually they detected that she has underdeveloped kidneys as well. Yet another thing that we needed to add to our already long list of complications… but we still prayed... in fact, we prayed harder.
We then were told that we can bring her home the day after Christmas. On the day that we were picking her up from the hospital a yellow card on her bedside read that she failed her hearing test. We brought home a deaf baby. By this time, worry was more than just a constant companion, by this time it developed into anxiety that seem to live and breathe a life of its own … but we held on to hope and trusted in the lord and we prayed like we never prayed before.
December 28, my birthday. I received a call from genetics doctors. They finally have a diagnosis that ties all these complications together. My daughter has wolf hirschorn syndrome. I cried… I was disheartened. When I googled the syndrome I was devastated. The prognosis is very grim…. Profound mental retardation… global developmental delay, seizures, Might not talk or walk….. I stopped praying.
I had many plans for her. I weaved many dreams of what she would grow up to be. In the many different beautiful scenarios that I have pictured in my head, none of that included feeding a child with a g tube, managing medication, pushing a child on a wheelchair, going to doctor’s clinics instead of hula classes, and working on speech skills and making sounds instead of having to sing songs with her. How will I be able to do things that I had planned for us when we do not even know when or if she is going to walk or talk. I was not equipped to do this. Despite my being a special education teacher, I was not ready to do this. I am not even willing to do it. I just can’t.
I did not understand why of all times in my life it had to be now. Why did it have to be me? Why my family? Why my daughter? Why when we finally brought ourselves to the Lord. I didn’t quite understand…. Why am I the lucky victim of this sick stroke of genius bad luck? Why didn’t he listen? I never ask for a lot of things, why was I not spared? God was unfair and I was angry and I was cursing at him. I hated him…. I really hated him. He was not there… was never there… God abandoned us.
In my grief… in those dark days and dark dark hours when I was asking god why? Why me? Why now? Why when I choose to come to you lord? A voice came to me and said, “I made you come to me cause I know you would need me”…. Upon hearing this voice, I experienced this lightness…. It was the answer that I was looking for. That was the day that I found myself praying again.
I said, Lord you gave me this, you have got to help me through this. You do not have a choice but to help me like I did not have a choice when you chose me for this task. You have got to help me. You just have to.
It took many tears, many sleep less nights, many crazy fits, extreme bitterness, intense self pity, many mind looping worries, fears, anger and anxieties before I eventually found myself in a place wherein I have surrendered all of this to the lord. It was not easy getting over the fear and the envy and the disappointment and the anger. It was not easy. It was very humbling but it was not easy, but I did it. I’m actually still doing it. I gave it all to HIM…. I offered Isabella’s fate/future into his hands. I realized that my children are not my children, they are the children of god. I am merely a steward. I was… we were… entrusted to care for Isabella. He trusted us, because he has that much confidence in us to give us this immense task, he believes that we can do this… and though I was very doubtful about the strength I had in me, I eventually found myself in a place of acceptance. Though there are days that I still shed a tear, when I still feel fear, frustration and doubt… I can easily muster the strength and courage to tell myself, that I can do this, with god’s help and god’s grace I can do this.
" My grace is sufficient for you, for my strength is made perfect in weakness"
Of all the crosses that I have had to bear in my life, this by far is the biggest… and yet, this is the lightest. I let god take over and I trust that he will fulfill his promise of carrying me through. Through him all things really are possible, all we’ve got to do is believe.
Thursday, September 09, 2010
Isabella's 9th Month
Current Stats:
Weight: 10 lbs 11 oz. - We met the 10 lb minimum goal weight for the cleft palate surgery
Length: 23 inches - Almost 2 feet long YAY!
We have outgrown newborn sized clothes and are ready to fill in the 0 to 3 month set.
Vision
She can track and follow us around the room.
She seems to be more aware of her surroundings.
She still seems to have better far vision.
She sometimes follows the sound of mommy's voice
She will stare at her hands and feet. She will also move her fingers and stare at them for long periods of time. It looks like we won't be needing baby toys for awhile. Body parts seem to be enough to entertain her.
Language and Social Development
She makes happy sounds which are mostly Mmmmm, Mmmmms. She will make vowel sounds like Aaaaahhh when she is calling for us or when she is upset.
Her cyring is much louder now.
The doctor was asking about her development one time and was asking if she was making consonant sounds. I told him that Mmmm is a consonant sound, but I guess it was not really a qualifiable yes response to the question. I think he was looking more at sounds like Ba-ba-bas, Ta-ta-tas, Pa-pa-pas, and Ga-ga-goo-goos.
It seems like she now calls for us when she does not see her in the room with her. She makes loud Aaaahhh sounds to call for us that stops and turns into a smile the moment somebody checks on her.
She will let out an accidental giggle every now and then. She managed to let out a giggle when we tickle her. it seems like she was not sure how to handle the tickling and thus a giggle came out of her. Pretty soon her giggles will be more puproseful and social in nature.
She is a happy baby. She is very easy to take care of and not demanding. She will cry when she needs her diaper changed or when she wants to be held. The moment her needs are met she will stop cyring. Every now and then she will cry when she is hungry.
Feeding
She eats semi solids alternately with her milk feeds during the day. She takes in about 40 mls of semi solids. She eats carrots, peas, apples and pears. The peas are her favorite.
She takes in 70 mls of milk during the day per feeding. She can orally take in 35 mls of milk using the pigeon nipple/bottle.
She still is fed via kangaroo pump through the night. She takes in 25 mls per hour throughout the night (10 to 7am.)
Sleep
She sleeps well throughout the night. She sleeps at around 9 to10pm and will wake up with a cry to get her diaper changed around 5 am. She will go back to sleep right after.
She takes 2 long naps during the day of about an hour each.
She sleeps better on her belly. We let her sleep on her belly during her day time naps.
Motor Development
She can turn with ease from side to side when we lay her on a flat surface.
She can turn from belly to her back.
She can also turn from her back to her belly, but sometimes still gets stuck on her side. She is getting better and better at moving her hand out of the way when she turns or being able to push harder with her leg to be able to make that turn.
She can definitely hold her head up. She likes being propped to sit on our leg or while leaning on pillows. She also likes sitting on her high chair inclined at about 100 degrees.
She can put her finger in her mouth or the back of her hand to her mouth.
Medical Stuff
Her PEG was changed into the less conspicuous Mickey button.
She has epsonic seizures. These are absence seizures. The EEG report says that she has about 1 to 3 seizures in a minute that last about 1 to 3 seconds each. Honestly my husband and I have not seen these "staring" seizures. We told the neuro that she sometimes does the blinking of her eyes with some jerking of the hands and feet that last only for a couple of seconds and has no known triggers nor patterns and are very spaced apart in occurence. Doctor says that these are also characteristic of the epsonic seizures. He added that Isabella's seizures are benign and she will not be needing medication at this time. He advised us to watch out for epileptic seizures and should we witness one we need to meet and talk about medication.
Others
She does not do the moving of her head from side to side when she is soothing herself to sleep. The hair at the back of her head now has a chance to grow back in.
-------------------------
This month was filled with a lot of positive progress. We are looking forward to how Isabella will surprise us in the succeeding months.
To read about Isabella's previous development update, click here
Weight: 10 lbs 11 oz. - We met the 10 lb minimum goal weight for the cleft palate surgery
Length: 23 inches - Almost 2 feet long YAY!
We have outgrown newborn sized clothes and are ready to fill in the 0 to 3 month set.
Vision
She can track and follow us around the room.
She seems to be more aware of her surroundings.
She still seems to have better far vision.
She sometimes follows the sound of mommy's voice
She will stare at her hands and feet. She will also move her fingers and stare at them for long periods of time. It looks like we won't be needing baby toys for awhile. Body parts seem to be enough to entertain her.
Language and Social Development
She makes happy sounds which are mostly Mmmmm, Mmmmms. She will make vowel sounds like Aaaaahhh when she is calling for us or when she is upset.
Her cyring is much louder now.
The doctor was asking about her development one time and was asking if she was making consonant sounds. I told him that Mmmm is a consonant sound, but I guess it was not really a qualifiable yes response to the question. I think he was looking more at sounds like Ba-ba-bas, Ta-ta-tas, Pa-pa-pas, and Ga-ga-goo-goos.
It seems like she now calls for us when she does not see her in the room with her. She makes loud Aaaahhh sounds to call for us that stops and turns into a smile the moment somebody checks on her.
She will let out an accidental giggle every now and then. She managed to let out a giggle when we tickle her. it seems like she was not sure how to handle the tickling and thus a giggle came out of her. Pretty soon her giggles will be more puproseful and social in nature.
She is a happy baby. She is very easy to take care of and not demanding. She will cry when she needs her diaper changed or when she wants to be held. The moment her needs are met she will stop cyring. Every now and then she will cry when she is hungry.
Feeding
She eats semi solids alternately with her milk feeds during the day. She takes in about 40 mls of semi solids. She eats carrots, peas, apples and pears. The peas are her favorite.
She takes in 70 mls of milk during the day per feeding. She can orally take in 35 mls of milk using the pigeon nipple/bottle.
She still is fed via kangaroo pump through the night. She takes in 25 mls per hour throughout the night (10 to 7am.)
Sleep
She sleeps well throughout the night. She sleeps at around 9 to10pm and will wake up with a cry to get her diaper changed around 5 am. She will go back to sleep right after.
She takes 2 long naps during the day of about an hour each.
She sleeps better on her belly. We let her sleep on her belly during her day time naps.
Motor Development
She can turn with ease from side to side when we lay her on a flat surface.
She can turn from belly to her back.
She can also turn from her back to her belly, but sometimes still gets stuck on her side. She is getting better and better at moving her hand out of the way when she turns or being able to push harder with her leg to be able to make that turn.
She can definitely hold her head up. She likes being propped to sit on our leg or while leaning on pillows. She also likes sitting on her high chair inclined at about 100 degrees.
She can put her finger in her mouth or the back of her hand to her mouth.
Medical Stuff
Her PEG was changed into the less conspicuous Mickey button.
She has epsonic seizures. These are absence seizures. The EEG report says that she has about 1 to 3 seizures in a minute that last about 1 to 3 seconds each. Honestly my husband and I have not seen these "staring" seizures. We told the neuro that she sometimes does the blinking of her eyes with some jerking of the hands and feet that last only for a couple of seconds and has no known triggers nor patterns and are very spaced apart in occurence. Doctor says that these are also characteristic of the epsonic seizures. He added that Isabella's seizures are benign and she will not be needing medication at this time. He advised us to watch out for epileptic seizures and should we witness one we need to meet and talk about medication.
Others
She does not do the moving of her head from side to side when she is soothing herself to sleep. The hair at the back of her head now has a chance to grow back in.
-------------------------
This month was filled with a lot of positive progress. We are looking forward to how Isabella will surprise us in the succeeding months.
To read about Isabella's previous development update, click here
To read about Isabella's previous developmental update, click here
Sunday, August 08, 2010
Isabella is 8 months old!
Current Stats:
Weight: 9 lbs 13 oz
Height: 21 inches
Current Skills:
Current Concerns:
She gained 1lb and 5oz since I last wrote about her stats (5 months). This is ofcourse not to mean that we did not have any chalenges in the weight gain and feeding department. Though we have made numerous adjustments in her feeding and have consulted many professionals and doctors about feeding issues, her weight gain is still slow. It is steady but it is slow. From the period June 9 to July 14 she only gained 2 oz (from 9lbs 2oz to 9lbs 4oz in a span of 5 weeks), which of course was a major concern since we are really shooting for the minimum 10lb goal for her cleft palate repair surgery scheduled in November. After many trials and errors, we finally found the best feeding schedule adjustment. She now takes in 30 to 35 mls per hour during the day time which translates to 90 to 105 mls in a 3 hour period . This as opposed to 60 to 70mls every 3 hours, which is her old feeding routine that usually ends up being thrown up. Our guess is that she could not handle a full 60 to70ml all in one feeding. Since the adjustment that we've made with her her feeding sched, she gaied 10oz in a period of 3 weeks…. We are keeping our fingers crossed that this new schedule is the best solution to address our feeding and weight gain concerns.
To read about Isabella's previous development update, click here
Weight: 9 lbs 13 oz
Height: 21 inches
Current Skills:
- She has discovered her hands and has gotten better at exploring them. Not only can she put them in her mouth, lick it, and suck her thumb, we’ve seen her staring at her fingers as she moves them for long periods of time. I guess she is amazed at how she can manage to move them when it took her some time to figure out how to bring her fist into her mouth. I love it that she does this over and over which means that she does not give up trying.
She is still in verge of discovering her feet…. This time though she has made significant progress in that area since we do not just catch her incidentally looking at them, she actually lifts them up and stares at it. We've also seen so nail scratch marks on her legs.... does that mean that she has been trying to reach for them?
She is in the throes of discovering herself in the mirror. She has smiled at me numerous times when we do mirror time, and there have been times when I catch her with that seemingly wondering stare at the baby that she sees her mama carrying. Pretty soon, she’ll figure out that the baby is her.
She fell in love with rice cereal the first time she tried them. I guess that love was just "pupply love" because now she has figured out that rice cereal tastes like cardboard and she will spit them through her nose to tell me that she dislikes it. Its time to explore other tastes.
Her head control has gotten better. She would really try her best to hold it up. Now we can check off that skill from the list. Next up is having her practice sitting with support.
One thing she has learned how to do right off the bat is to manipulate her parents. She now does this loud fake cry to coerce us to hold her. The moment we pick her up she stops crying. If we decide to put her down, the moment her butt touches the bed she starts crying again. She is a master manipulator and we let her get away with it.
She smiles, and i do mean A LOT! Lately she's been doing this silly grin on her face like she thought of something really funny. What's fishy though is we seem to see this smile whenever we change her poopy diaper or when she is naked.
Medical Updates
- We had her first 8 hour EEG 3 days ago. She showed no signs of obvious seizures. We tried many different things that we think can induce a seizure and we didn’t witness anything. This is of course not a certaintly that she does not have them or that she will not have them. The EEG could have picked up seizures that we cannot see. We are still waiting for the doctor’s call regarding his reading of the results and we are keeping our fingers crossed.
- The GI doctors took her PEG out last Friday and now she has the low profile Mickey Button. Now we have more options for baby girl clothes.
Current Concerns:
She gained 1lb and 5oz since I last wrote about her stats (5 months). This is ofcourse not to mean that we did not have any chalenges in the weight gain and feeding department. Though we have made numerous adjustments in her feeding and have consulted many professionals and doctors about feeding issues, her weight gain is still slow. It is steady but it is slow. From the period June 9 to July 14 she only gained 2 oz (from 9lbs 2oz to 9lbs 4oz in a span of 5 weeks), which of course was a major concern since we are really shooting for the minimum 10lb goal for her cleft palate repair surgery scheduled in November. After many trials and errors, we finally found the best feeding schedule adjustment. She now takes in 30 to 35 mls per hour during the day time which translates to 90 to 105 mls in a 3 hour period . This as opposed to 60 to 70mls every 3 hours, which is her old feeding routine that usually ends up being thrown up. Our guess is that she could not handle a full 60 to70ml all in one feeding. Since the adjustment that we've made with her her feeding sched, she gaied 10oz in a period of 3 weeks…. We are keeping our fingers crossed that this new schedule is the best solution to address our feeding and weight gain concerns.
To read about Isabella's previous development update, click here
2010 WHS Conference
The whole family took a long drive to attend the WHS conference in Salt Lake City Utah. It was a wealth of useful information for newbie parents like us. We gained a lot of knowledge regarding the genetics aspect of the syndrome as well as ideas on the how to’s for the many concerns associated with the syndrome (i.e. feeding, sleep, seizures). I met the other WHS mommies I've met in cyber space and the best part was meeting other kids and adults like Isabella. It was very reasurring for me to see what she can grow up into. It reinforced the “can do" approach that I have been sporting lately to an “I can do this” level.”
Monday, July 12, 2010
Remembering Then to Really Appreciate Now
Dear Isabella,
I stumbled upon your pictures at the NICU and it brought tears in Nanay’s eyes. Anak, may our stay at the NICU serve as a memory and reminder for us to realize how far you’ve come.
I never thought I'd be saying this, but may I never forget our NICU days so that I will never take for granted each attempt you make to learn a new skill
Most importantly, may I always remember these days in the NICU, so that we can celebrate your triumphs for each skill that you worked so hard to master.
Anak, I pray that you never lose your persevering spirit. I will always be here to encourage and cheer you on.
With much love,
Nanay
I stumbled upon your pictures at the NICU and it brought tears in Nanay’s eyes. Anak, may our stay at the NICU serve as a memory and reminder for us to realize how far you’ve come.
I never thought I'd be saying this, but may I never forget our NICU days so that I will never take for granted each attempt you make to learn a new skill
Most importantly, may I always remember these days in the NICU, so that we can celebrate your triumphs for each skill that you worked so hard to master.
Anak, I pray that you never lose your persevering spirit. I will always be here to encourage and cheer you on.
With much love,
Nanay
The above pictures were all then.....
This is now.
I anticipate with joy all of your future progress. Take as much time as you need baby girl.
Hair Today... Gone Tomorrow
Isabella does this thing to help soothe herself. She would usually rub the back of her head on the fabric covering her bed to help calm herself down. And because she’s been doing this for soooo long, check out these before and after photos...
BEFORE
AFTER
Thursday, June 24, 2010
Projectile Puking
I'm guessing that puking is part of the parenting package. At least for this (referring to me) parent's package.
I remember when my son was a baby, he would throw up a lot… and I do mean, A LOT!
He even knows when the most opportune throwing up time is (i swear he can induce a barf at will)… such as that one time that we were in a restaurant… he would have a coughing spell that sounds like he was choking even if he was not, then throw up immediately after. And he would do this just as two elderly ladies are ogling him. How lovely!
Another time he chose to throw up at a restaurant, and he did this right before we were about to leave… just when we thought we were going to be spared from embarrassment, he did it, right there, with an audience. The waiter came and had to mop our area suppressing his own urge to barf, meanwhile we were scrounging for all the bills and cash we have so we can at least leave the poor guy a decent tip.
Another “favorite”, was when we went to a buffet and in the middle of our all you can eat dinner, my son decided to entice us with what he had for dinner. In the middle of our meal, of course, we lost our appetite. We cleaned up his puke-mater as much as we can, with the very limited paper towels we had on our table, threw the soiled paper in the trash, and cover the left over mess with the table napkin. We left the restaurant just walking straight to the door not daring to look back. We did leave $30 for whoever was bound to discover the sordid “surprise” we left. How embarrassing!
It was at that time that my husband and I realized that date night would have to be put on hold… at least until Eloi can manage to keep his food down.
I never really understood why he had this affinity for not digesting his food all the way. It baffles me to this day.
And now, enter my little Isabella.
It was understandable that she would puke when she had her NG tube, it was also understandable that she would puke when the food came down too fast in her G tube. And since feeding issues come with her syndorme, her puking was something, shall I say, predicted… something expected. No stress, no judgment, just something accepted as a regular part our everyday life. And since we’ve had all that puking practice in the past, we’ve become, shall I say, (ehem, ehem) experts at this puke business. We made certain that she would always have extra clothes, that we have a roll of paper towel, that we would give her food in parts, and have extra shirts for me, my husband and Eloi packed together with her diapers. We were always armed and ready for the barf battle.
Bring it on!
This afternoon though…. In the comfort and confines of my home, whilst Isabella was sitting on my lap and we were having coo conversations…. I was caught unguarded, and the projectile puke came from out of the blue, shooting from out of her nose and went right into my open mouth!
The physics behind this projectile puking was just amazing! This sort of talent just blew me away… I mean literally… SHE BLEW AWAY ON ME!
(Hahahaha!)
I remember when my son was a baby, he would throw up a lot… and I do mean, A LOT!
He even knows when the most opportune throwing up time is (i swear he can induce a barf at will)… such as that one time that we were in a restaurant… he would have a coughing spell that sounds like he was choking even if he was not, then throw up immediately after. And he would do this just as two elderly ladies are ogling him. How lovely!
Another time he chose to throw up at a restaurant, and he did this right before we were about to leave… just when we thought we were going to be spared from embarrassment, he did it, right there, with an audience. The waiter came and had to mop our area suppressing his own urge to barf, meanwhile we were scrounging for all the bills and cash we have so we can at least leave the poor guy a decent tip.
Another “favorite”, was when we went to a buffet and in the middle of our all you can eat dinner, my son decided to entice us with what he had for dinner. In the middle of our meal, of course, we lost our appetite. We cleaned up his puke-mater as much as we can, with the very limited paper towels we had on our table, threw the soiled paper in the trash, and cover the left over mess with the table napkin. We left the restaurant just walking straight to the door not daring to look back. We did leave $30 for whoever was bound to discover the sordid “surprise” we left. How embarrassing!
It was at that time that my husband and I realized that date night would have to be put on hold… at least until Eloi can manage to keep his food down.
I never really understood why he had this affinity for not digesting his food all the way. It baffles me to this day.
And now, enter my little Isabella.
It was understandable that she would puke when she had her NG tube, it was also understandable that she would puke when the food came down too fast in her G tube. And since feeding issues come with her syndorme, her puking was something, shall I say, predicted… something expected. No stress, no judgment, just something accepted as a regular part our everyday life. And since we’ve had all that puking practice in the past, we’ve become, shall I say, (ehem, ehem) experts at this puke business. We made certain that she would always have extra clothes, that we have a roll of paper towel, that we would give her food in parts, and have extra shirts for me, my husband and Eloi packed together with her diapers. We were always armed and ready for the barf battle.
Bring it on!
This afternoon though…. In the comfort and confines of my home, whilst Isabella was sitting on my lap and we were having coo conversations…. I was caught unguarded, and the projectile puke came from out of the blue, shooting from out of her nose and went right into my open mouth!
The physics behind this projectile puking was just amazing! This sort of talent just blew me away… I mean literally… SHE BLEW AWAY ON ME!
(Hahahaha!)
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