We had an annual IFSP for Isabella just recently. Right before the meeting, I found ,yself reviewing the IFSP from a year ago and the one done 6 months ago. For both IFSPs no goals were met and her developmental level at 9 months was that of a 0 to 3 month old. I do feel that Isabella has made great progress developmentally, however most of the progress she makes are the tiny steps that leads to the major goals that the IFSP team has developed. While reviewing, I felt that none of her goals were met and my perception is that her developmental level at 14 months was that of a 4 month old.
At the IFSP meeting, all the service providers were there. We briefly discussed birth and medical history and the type and frequency of services that she receives. Then we proceeded to discussing what is current in terms of Isabella’s development.
• Vision is within normal limits as per last vision check up.
• Suspected hearing loss on both ears. With the right ear being on the moderate to severe range and the left at mild to moderate. Although this results are inconsistent with a sedated ABR done April 2010, where the results indicated the she has normal hearing in both ears.
• Cognitive skills are at the 3 to 6 month range. She uses her hands to explore her mouth, plays peek a boo, and her interest on toys that make sounds are emerging.
• Language skills are at a 3 to 5 month range. She shows interest in music and sounds. She also laughs when we play with her. She coos using “Mmmm” sounds.
• Social Skills are at the 3 to 5 month range. She shows interest in people and likes to watch them. She likes to be in constant sight and hearing of an adult.
• Gross motor skills appear to be at the 5 to 6 month range. She rolls both sides, hold her head up, and with assistance can support herself sitting with extended hands.
• Fine Motor skills are at the 3 to 6 month range. She can track objects, grasp toys when placed on her palm, put her hands and fingers to or in her mouth, and clasp her hands together.
• Self Help skills are at the 3 to 6 month range. Her cleft palate has been repaired and is being seen by a feeding OT. She is tube fed and takes in semi solids by mouth. She licks her fingers and will lick a toy when placed near her mouth.
She did meet 1/3 goals benchmarks that the team has developed (attention to a variety of stimulation, After the report, I felt that our estimation of Isabella’s skills were in the range, most likely the average level of the skills noted above. Old un-met goals (crawl, sit without support, grasp/pick up toys or small objects, and transferring objects from one hand to the other) were continued, and new goals were developed (play with toys, react to music by cooing, babble, pivot her body in prone, sit momentarily leaning on hands, and transfer objects from one hand to the other) .
We left the meeting feeling good that our daughter made progress. And I actually cried because she is moving forward, slow it maybe be, at least she’s moving forward.
However, when I found myself reading the report, I found that not only did they write where Isay is at developmentally, they also wrote in percentages how delayed she is… 79% delay. 79 out of 100.
I’m aware of the reality of it… and I’m still happy with what progress she’s made… but it hurt seeing that difference.
I gotta keep looking at the have's and focus on the positives.
To read about Isabella's development last month, click here
Tuesday, March 01, 2011
Tuesday, February 22, 2011
So How Are ‘We” Doing?
I have contemplated really long and hard on whether I should write about a post regarding, since having Isabella in our life, our marriage situation. I am not quite sure about how readers will be reacting to this post… however, since the main purpose of my blogging is to share my emotions to other “special” parents like me, I felt that touching on the topic of “marriage” is something that you people might be interested to read about as I feel that perhaps, I may not be the only one who awas faced with the challenging task of trying to balance the marriage on top of the already many things I need to juggle.
I have dealt with the once dreadful questions gracefully…. How are you doing? How is the baby? I have figured out a way to respond without having the need to dodge them. However, I was not prepared to be asked the question, “So, how is your marriage doing in spite of all this?”… just like how the previous 2 questions used to affect me, getting asked this question threw me into a crying fit in front of the person that asked. And as much as I have tried to figure out how I can dodge or answer this question with the purpose of hiding how I really felt, I figured a healthier way to approach it is to actually deal with the reality of how our marriage was really doing. It was not going well then.
But, just like I have found a way, and I may have to say, I have come around beautifully, dealing with how I am doing and how the baby is doing, things managed to come around also with the status of our marriage.
Just to be clear, right now, I am doing well, the baby is doing fine, and my marriage is okay. It really is. Yeah, we have our typical arguments and finding our way around our differences, which every marriage has. We are doing fine. It was doing fine right before Isabella came into our life and it is doing fine right now. However, I would have to admit though, that since having Isabella, we did have a big strain on our marriage. That time in between having Isabella until recently, was not only a dark and difficult time for me emotionally, it was also a dim period in our marraige
Since having Isabella, we fought more than we used to. We argued more than we used to. And the differences, it almost seemed as if there was no going around it. What made it tougher is how we both dealt with the reality of our situation. My spouse and I deal very differently with disappointment, frustration, despair, grief, and anger. And since we were both dealing with the intensity of the situation we were in, we needed emotional support… support that we cannot give one another because we were both dealing, trying to deal, with our situation
We yelled, we hid, we tuned out, we walked away, we escaped, we blamed, we became verbally abusive, and things were thrown if not destroyed around the house…. and the moments wherein we would want to be passive the other one wanted to be actively dealing, and when the other one is actively dealing, the other one chooses to be in a passive state. It was almost as if we would never see each other eye to eye ever again and I felt alone, isolated, and taken for granted.
We were in pain that we demand for the other person to understand. We were hurt that we wish for the other person to be more understanding. We felt weak and we want the other to take in the role of being the stronger one. But we were both dealing with our pain… we didn’t have time to take care of the other person in the marriage since we can barely take care of ourselves. We wanted to be the one to be nursed and understood and heard. We each wanted it to be about our bruised selves.What made it all the more challenging is that we cannot just take care of ourselves or the other person with what left over time we could spare, we had Isabella to take care of and boy did she need a lot of our time.
The first year went by really quick. We were busy with doctor visits, setting up services, and remembering medications. But, in between the appointments, the phone calls, the specialists’ visits and the prescription refills, we would try to cope. It was not easy. Isabella took up a lot of our time and yet we also needed that time to try and heal.
In the middle of taking care of Isabella, and the trying to not overcompensate with our son Eloi, and our healing, nobody took the time to take care of “us”… and our marriage suffered. Our self absorbed “but what about me” approach put a big strain in our relationship and somewhere there came more disappointments to deal with, which for the most part was the disappointment of not getting the emotional support we each needed from that one supposed person to really get it, the spouse. And with the disappointments piling up came the frustrations which then led to resentments.
Honestly I contemplated on running away, leave him to deal with all this. I thought about weighing the risks involved just to have that chance to begin again. I thought about it long and hard. But my heart belongs to my children…. Both of them, and more so to Isabella. I figured our marriage can take a back seat for now and I have got to figure out a way around my coping and the taking care of the children. My husband is an adult, he has got to figure out a way to take care of himself without having to have me do it for him, right?
Eventually I realized, that I do need him... we needed each other. I need him to be the stronger one or at least try to pretend to be. And I have to be that person, pretend to be that person when he needs me to be that person. I realized that taking care of “us” is not an individual job, it is both our job. We need to be together in the doing. We needed to be together in everything. After all, that was what marriage is about… 2 people becoming one. So, we started talking, which was more of trying to reach out to the other tuned-out person at the beginning, which then turned into arguing, which later turned into discussions… to commitments…and eventually evolved into both us working on everything together as one. Just like how it should’ve been since the beginning.
I came to experience first hand how things sometimes have a tendency to get worse before they actually get better, but with that came the wisdom that things are indeed bearable when two of you share the load. I know that we still have the rest of our lifetime to go through many rough patches and managing to patch things up. We have a long ways to go really, and we have a long stretch of time ahead of us to keep on wanting to work things out… After all that is what making a commitment to spend the rest of our lives together is all about.
So if any of you out there is dealing with a rough phase in your marriage, this too shall pass. Keep your focus on each other and your family, and when things start to look like they are getting worse, work yourselves through it, because in the end the risks involved in the leaving does not, by a long shot outweigh the rewards of staying. My advice is that, in the face of all the negative forces that you will be encountering, counter it with love and more love each time… and of course, you also need to put in a lot of prayer… only God will help both of you get through this.
I have dealt with the once dreadful questions gracefully…. How are you doing? How is the baby? I have figured out a way to respond without having the need to dodge them. However, I was not prepared to be asked the question, “So, how is your marriage doing in spite of all this?”… just like how the previous 2 questions used to affect me, getting asked this question threw me into a crying fit in front of the person that asked. And as much as I have tried to figure out how I can dodge or answer this question with the purpose of hiding how I really felt, I figured a healthier way to approach it is to actually deal with the reality of how our marriage was really doing. It was not going well then.
But, just like I have found a way, and I may have to say, I have come around beautifully, dealing with how I am doing and how the baby is doing, things managed to come around also with the status of our marriage.
Just to be clear, right now, I am doing well, the baby is doing fine, and my marriage is okay. It really is. Yeah, we have our typical arguments and finding our way around our differences, which every marriage has. We are doing fine. It was doing fine right before Isabella came into our life and it is doing fine right now. However, I would have to admit though, that since having Isabella, we did have a big strain on our marriage. That time in between having Isabella until recently, was not only a dark and difficult time for me emotionally, it was also a dim period in our marraige
Since having Isabella, we fought more than we used to. We argued more than we used to. And the differences, it almost seemed as if there was no going around it. What made it tougher is how we both dealt with the reality of our situation. My spouse and I deal very differently with disappointment, frustration, despair, grief, and anger. And since we were both dealing with the intensity of the situation we were in, we needed emotional support… support that we cannot give one another because we were both dealing, trying to deal, with our situation
We yelled, we hid, we tuned out, we walked away, we escaped, we blamed, we became verbally abusive, and things were thrown if not destroyed around the house…. and the moments wherein we would want to be passive the other one wanted to be actively dealing, and when the other one is actively dealing, the other one chooses to be in a passive state. It was almost as if we would never see each other eye to eye ever again and I felt alone, isolated, and taken for granted.
We were in pain that we demand for the other person to understand. We were hurt that we wish for the other person to be more understanding. We felt weak and we want the other to take in the role of being the stronger one. But we were both dealing with our pain… we didn’t have time to take care of the other person in the marriage since we can barely take care of ourselves. We wanted to be the one to be nursed and understood and heard. We each wanted it to be about our bruised selves.What made it all the more challenging is that we cannot just take care of ourselves or the other person with what left over time we could spare, we had Isabella to take care of and boy did she need a lot of our time.
The first year went by really quick. We were busy with doctor visits, setting up services, and remembering medications. But, in between the appointments, the phone calls, the specialists’ visits and the prescription refills, we would try to cope. It was not easy. Isabella took up a lot of our time and yet we also needed that time to try and heal.
In the middle of taking care of Isabella, and the trying to not overcompensate with our son Eloi, and our healing, nobody took the time to take care of “us”… and our marriage suffered. Our self absorbed “but what about me” approach put a big strain in our relationship and somewhere there came more disappointments to deal with, which for the most part was the disappointment of not getting the emotional support we each needed from that one supposed person to really get it, the spouse. And with the disappointments piling up came the frustrations which then led to resentments.
Honestly I contemplated on running away, leave him to deal with all this. I thought about weighing the risks involved just to have that chance to begin again. I thought about it long and hard. But my heart belongs to my children…. Both of them, and more so to Isabella. I figured our marriage can take a back seat for now and I have got to figure out a way around my coping and the taking care of the children. My husband is an adult, he has got to figure out a way to take care of himself without having to have me do it for him, right?
Eventually I realized, that I do need him... we needed each other. I need him to be the stronger one or at least try to pretend to be. And I have to be that person, pretend to be that person when he needs me to be that person. I realized that taking care of “us” is not an individual job, it is both our job. We need to be together in the doing. We needed to be together in everything. After all, that was what marriage is about… 2 people becoming one. So, we started talking, which was more of trying to reach out to the other tuned-out person at the beginning, which then turned into arguing, which later turned into discussions… to commitments…and eventually evolved into both us working on everything together as one. Just like how it should’ve been since the beginning.
I came to experience first hand how things sometimes have a tendency to get worse before they actually get better, but with that came the wisdom that things are indeed bearable when two of you share the load. I know that we still have the rest of our lifetime to go through many rough patches and managing to patch things up. We have a long ways to go really, and we have a long stretch of time ahead of us to keep on wanting to work things out… After all that is what making a commitment to spend the rest of our lives together is all about.
I take you to be my spouse, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.
So if any of you out there is dealing with a rough phase in your marriage, this too shall pass. Keep your focus on each other and your family, and when things start to look like they are getting worse, work yourselves through it, because in the end the risks involved in the leaving does not, by a long shot outweigh the rewards of staying. My advice is that, in the face of all the negative forces that you will be encountering, counter it with love and more love each time… and of course, you also need to put in a lot of prayer… only God will help both of you get through this.
1 Corinthians 13:7 Love always perseveres. (NIV)
Love always perseveres and never looks back. Love never stops, never quits, never doubts, and never goes against the good. Love never loses sight of the goal of glorifying God with all we have and with all we do. Love perseveres over all obstacles because the stakes of winning are so high even thinking about quitting is not an option. Love perseveres because Christ perseveres, because God perseveres, and because the Holy Spirit perseveres. These three in one are love. Love perseveres because love is too exuberant to stop. Love has so much energy within it no one can prevent love's upward progress.
Wednesday, February 09, 2011
14th Month Update
The Stats:
Isabella now weighs 13 lbs and is 24 inches long. We are gradually letting go of the 0 to 3 month clothes and saying hello to the 3 to 6 month sized onesies.
Medical Updates:
We had a number of appointments this month. We met with the neuro doctor and Isabella also has another EEG. There were no significant changes in the EEG results and there were no significant progress to report from the neuro-developmental perspective. It was just a simple follow up appointment. We also had an audiology appointment and with the several testing the audiologist has done, it shows that Isabella has hearing loss on both ears, with her right ear being on the moderate to severe hearing loss range. I found it puzzling that she has normal hearing for both ears for the sedated ABR done in April. I spoke to my speech therapist friend and she says that there is a chance that the test they did was just not developmentally appropriate for her. So, with regards to her hearing, we’ll just keep her fingers crossed, pray a lot and hope that her hearing is going to be fine.
Skill Updates:
• Isabella is better at supporting herself sitting down. Although she still can’t really do it on her own, and she will still fall when her arms are propped to support her body, we feel that it won’t be long that she will get to master this sitting-supporting-herself skill. Her head control is so much better and her back much stronger. She still likes being on her tummy but she has also learned how to enjoy sitting on her high chair or bumbo seat. She can definitely roll with ease and we will find her all over the blanket on the floor. This is a skill that is definitely mastered.
• She has found her feet. She automatically reaches for them when we take her clothes or socks off when we change her diapers. We have yet to wait for that time that she will explore her toes with her mouth.
• She still does not play with toys, her fingers are enough to entertain her as she will put it on her mouth and she will lick and drool on them. People are also very interesting for her. She likes it when we have company and she just likes to watch them. She’s definitely a social baby.
• She has done several social giggles. When we sing, make silly sounds, play, or when we tickle her, she will giggle. Although she becomes a “snob” from time to time pretending that what we’re doing when we play with her is not fun nor interesting. She can be a “princess” sometimes.
• Her core abdominal muscles are getting stronger. We believe that as her abs get stronger, her sitting will get better. We have found on her actually trying to pull her self up from lying down on her back. We encourage her to keep doing these “sit-up” like movements to strengthen her abs.
• She’s developed “separation anxiety” which made everyone in the Catiis home very happy. Whenever she cries because she does not see us or when she cries if one of us leaves, makes us all happy.
• We’ve been playing this adapted version of the peek-a-boo game and she smiles at us, sometimes giggles, and occasionally shrieks.
Feeding
• She still gets hooked up from 8pm to 8am on the kangaroo pump. We have seen less throw-ups, which is a milestone in itself. Very rarely will she throw up full feeds. She takes in 41 mls/ hour at night while on the pump and during daytime feedings she takes in 100mls. It has happened that she can take in full daytime feeds orally. She is less aversive to her bottle and she has, at times, opened them to welcome the bottle it. She cannot suck. She seemed to have lost it. We thought she would be able to when she got her cleft repaired, but she has not gained that skill back. Perhaps in time she will. She will gnaw or chew on her pigeon nipple and milk comes out. She has better swallowing coordination, but occasionally she still coughs. We were hoping that her daytime feeds will all be given via mouth… the lady that used to baby sit her did a really great job feeding her only by mouth during the day and she will take in all her feed volumes. However, that lady had to leave and so we are now back to tube feeding during the day, because the new lady watching her cannot get her to really eat all of her feeds via bottle and Isabella needs to gain weight.
• She had a cold and we were scared that if she gets sick she might have a seizure. She also cannot eat well when she had a cold. We would feed her rice cereal but she still developed an aversion for the spoon. In time though we think that she will get better at it. So far the cold hasn’t crossed over to making her really sick and it looks like there are no scary seizures coming anytime soon.
Upcoming
• We have asked and consulted with our doctors and therapists about seeing a pediatric chiropractor. They recommended that we see an Osteopath instead. I had no idea how hard it was to actually find a pediatric doctor of Osteopathy who has worked with kids with developmental delay, syndromes and low tone, but we did find one. Isabella has an initial appointment set for March.
• We have an IFSP coming up soon. I cannot believe that it has been a year since she started receiving early start services.
• We have follow up appointments with the renal doctors, the GI clinic, and the Craniofacial team in March.
• We were having issues with baby care…. but, after all the looking around, and asking around, and researching, we found out that she qualifies for nurse care. So, a nurse will be caring for our little Isabella really soon. What a big blessing!
Isabella now weighs 13 lbs and is 24 inches long. We are gradually letting go of the 0 to 3 month clothes and saying hello to the 3 to 6 month sized onesies.
Medical Updates:
We had a number of appointments this month. We met with the neuro doctor and Isabella also has another EEG. There were no significant changes in the EEG results and there were no significant progress to report from the neuro-developmental perspective. It was just a simple follow up appointment. We also had an audiology appointment and with the several testing the audiologist has done, it shows that Isabella has hearing loss on both ears, with her right ear being on the moderate to severe hearing loss range. I found it puzzling that she has normal hearing for both ears for the sedated ABR done in April. I spoke to my speech therapist friend and she says that there is a chance that the test they did was just not developmentally appropriate for her. So, with regards to her hearing, we’ll just keep her fingers crossed, pray a lot and hope that her hearing is going to be fine.
Skill Updates:
• Isabella is better at supporting herself sitting down. Although she still can’t really do it on her own, and she will still fall when her arms are propped to support her body, we feel that it won’t be long that she will get to master this sitting-supporting-herself skill. Her head control is so much better and her back much stronger. She still likes being on her tummy but she has also learned how to enjoy sitting on her high chair or bumbo seat. She can definitely roll with ease and we will find her all over the blanket on the floor. This is a skill that is definitely mastered.
• She has found her feet. She automatically reaches for them when we take her clothes or socks off when we change her diapers. We have yet to wait for that time that she will explore her toes with her mouth.
• She still does not play with toys, her fingers are enough to entertain her as she will put it on her mouth and she will lick and drool on them. People are also very interesting for her. She likes it when we have company and she just likes to watch them. She’s definitely a social baby.
• She has done several social giggles. When we sing, make silly sounds, play, or when we tickle her, she will giggle. Although she becomes a “snob” from time to time pretending that what we’re doing when we play with her is not fun nor interesting. She can be a “princess” sometimes.
• Her core abdominal muscles are getting stronger. We believe that as her abs get stronger, her sitting will get better. We have found on her actually trying to pull her self up from lying down on her back. We encourage her to keep doing these “sit-up” like movements to strengthen her abs.
• She’s developed “separation anxiety” which made everyone in the Catiis home very happy. Whenever she cries because she does not see us or when she cries if one of us leaves, makes us all happy.
• We’ve been playing this adapted version of the peek-a-boo game and she smiles at us, sometimes giggles, and occasionally shrieks.
Feeding
• She still gets hooked up from 8pm to 8am on the kangaroo pump. We have seen less throw-ups, which is a milestone in itself. Very rarely will she throw up full feeds. She takes in 41 mls/ hour at night while on the pump and during daytime feedings she takes in 100mls. It has happened that she can take in full daytime feeds orally. She is less aversive to her bottle and she has, at times, opened them to welcome the bottle it. She cannot suck. She seemed to have lost it. We thought she would be able to when she got her cleft repaired, but she has not gained that skill back. Perhaps in time she will. She will gnaw or chew on her pigeon nipple and milk comes out. She has better swallowing coordination, but occasionally she still coughs. We were hoping that her daytime feeds will all be given via mouth… the lady that used to baby sit her did a really great job feeding her only by mouth during the day and she will take in all her feed volumes. However, that lady had to leave and so we are now back to tube feeding during the day, because the new lady watching her cannot get her to really eat all of her feeds via bottle and Isabella needs to gain weight.
• She had a cold and we were scared that if she gets sick she might have a seizure. She also cannot eat well when she had a cold. We would feed her rice cereal but she still developed an aversion for the spoon. In time though we think that she will get better at it. So far the cold hasn’t crossed over to making her really sick and it looks like there are no scary seizures coming anytime soon.
Upcoming
• We have asked and consulted with our doctors and therapists about seeing a pediatric chiropractor. They recommended that we see an Osteopath instead. I had no idea how hard it was to actually find a pediatric doctor of Osteopathy who has worked with kids with developmental delay, syndromes and low tone, but we did find one. Isabella has an initial appointment set for March.
• We have an IFSP coming up soon. I cannot believe that it has been a year since she started receiving early start services.
• We have follow up appointments with the renal doctors, the GI clinic, and the Craniofacial team in March.
• We were having issues with baby care…. but, after all the looking around, and asking around, and researching, we found out that she qualifies for nurse care. So, a nurse will be caring for our little Isabella really soon. What a big blessing!
To read about Isabella's previous developmental update, click here
Thursday, January 06, 2011
a NEW year
This past year was a whirlwind of sorts for our family. We went through moments of grief, of sadness, of fear, of doubt, of weakness, and a long period where our faith has been tested. Nonetheless, through the help of God and our relentless holding on to our faith, we were able to rise above the challenges that the past year has brought.
It was around this time last year when my Isabella was freshly diagnosed... a dark time in my life that I never thought I would have recovered from. It is with shame that I admit that i felt defeated, hopeless... lifeless. But... as the saying goes, "Time heals all wounds".... and I would have to say that this saying has a ring of truth to it. However, I found myself identifying with a less popular saying than the one aforementioned, and that is this... "Scar tissue is stronger than regular tissue". And here I am, a year after, not yet fully recovered, but I am proud to say that I am on a positive path of recovering. I feel much more stronger, and I am looking forward to this coming year because it just feels really promising, and that in itself is a gift.
We've learned valuable lessons this year... we've learned how to find cheer in the midst of the noise and chaos, we've learned how to find joy in the littlest of gifts, and we've learned to let go of trying to have control over things. Most improtantly we learned about a deeper level of trust that I believe is called true "faith".
We have been blessed by having the support of a lot of people that prayed for us, and encouraged us, and despite the rocky moments of 2010, my family and I have found that this year has been a very fruitful year, for it made us better people.... it made us who we are today.
Happy New Year everyone!
It was around this time last year when my Isabella was freshly diagnosed... a dark time in my life that I never thought I would have recovered from. It is with shame that I admit that i felt defeated, hopeless... lifeless. But... as the saying goes, "Time heals all wounds".... and I would have to say that this saying has a ring of truth to it. However, I found myself identifying with a less popular saying than the one aforementioned, and that is this... "Scar tissue is stronger than regular tissue". And here I am, a year after, not yet fully recovered, but I am proud to say that I am on a positive path of recovering. I feel much more stronger, and I am looking forward to this coming year because it just feels really promising, and that in itself is a gift.
We've learned valuable lessons this year... we've learned how to find cheer in the midst of the noise and chaos, we've learned how to find joy in the littlest of gifts, and we've learned to let go of trying to have control over things. Most improtantly we learned about a deeper level of trust that I believe is called true "faith".
We have been blessed by having the support of a lot of people that prayed for us, and encouraged us, and despite the rocky moments of 2010, my family and I have found that this year has been a very fruitful year, for it made us better people.... it made us who we are today.
Happy New Year everyone!
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