Friday, June 22, 2012
Dev. Ped. Appt. Update
Well the appointment didn't go as well as planned. I feel as if Liv is gaining in her progress, but the doctor didn't really think so. In the 6 months we had since the last appointment, she gained 1 month. She is really concerned about her lack of speech. We were told to see a occupational therapist to have her tested for sensory processing disorder and a speech therapist to work on her learning words. Mind you that she already has these therapies but she feels that it's not as intense and needs her to go through CHOP to get evaluated. We have noticed her getting stronger since she started seeing their physical therapist, so we hope to see big gains when we start with the others. It just sucks to have to make more appointments. I feel like that's all we ever do. She sees PT every Friday. Now we are going to add two more therapists, yuck! So the bad news is that they estimate her IQ to be a level 30 and intelligent disorder (mental retardation) is at 70. She will be diagnosed as MR when she is 5. I knew that was going to happen, but it hurts to hear it. Sometimes I just wish God would come and heal her. But I guess her purpose in life is to show others that they need to be determined and happy.
Tuesday, June 12, 2012
God's Little Gift
I never realized that I would have this huge of a mission in life. I always thought I was going to be like everyone else and live a "regular" life. I became a teacher in Philadelphia to help under-privileged children. I'm a person that helps others and tries to do the right thing. Then Olivia was born.
Olivia is the exception to the rule. She has been diagnosed with two rare chromosomal disorders. Putting the two of them together makes it so rare that her genetics team of 5 couldn't even find a documented history of anyone having the combination. She walks a path all her own.
God gave me such a complicated child because it does take a special parent to care for special needs children. Who would have thought I would be the chosen one? All of us are children of God and as parents, we are just parenting the children He gives us until he feels they have made the impression He intended for them. They will then return to him and be at peace.
My body has been pushed to the limits and not in the way that I pumped too much iron in the gym and my muscles are having spasms. Having a special needs child means being an advocate. This is the toughest job I have ever been assigned. Fighting for her to have the life she deserves comes with heartache and a ton of paperwork and phone calls. I am a personal assistance to a 3 year old. I work as hard as the personal assistance to the stars, however, I have this job every minute of the day. She has 7 doctors and 4 therapists. The people I spend the most time on the phone with are insurance companies and medical supplies companies. She has to get monthly deliveries and fighting for her supplies is a frustrating battle. In the beginning, crying daily was a normal thing. I guess I have learned how to handle the situations better.
The reason I call her a gift is because of the people she has made my husband and I. We were already giving to the community by teaching, but now we are teaching others in a different way. We are teaching everyone that comes into contact with us how important life and family really is. Stop sweating the small things because there's a much bigger picture in life. We are meant to work as a community to help each other out while we are here on Earth. The world has seemed to forget this. I will push with every ounce in my body to get my daughter what she needs to have the most successful life she is capable of. But I do know that she has touched more lives in her 3 years of existence than I have my whole life. She shows others that if you have determination, you can work to get the things you need. No matter how sick she can be lying in a hospital, she will make the nurses laugh and smile at her. She feels the need to enlighten everyone's spirits. We can go to a restaurant and her main goal will be to get as many smiles from as many people as possible. How many of us can say that we do the same? She is 3 and is my role model.
I now look at special needs children and only see beauty. This is what my daughter has taught me. I hope that either my daughter or another special needs child can touch each and everyone's life. They really are special people.
Thank you God for granting me the opportunity to raise a child that is so inspiring to the world.
Olivia is the exception to the rule. She has been diagnosed with two rare chromosomal disorders. Putting the two of them together makes it so rare that her genetics team of 5 couldn't even find a documented history of anyone having the combination. She walks a path all her own.
God gave me such a complicated child because it does take a special parent to care for special needs children. Who would have thought I would be the chosen one? All of us are children of God and as parents, we are just parenting the children He gives us until he feels they have made the impression He intended for them. They will then return to him and be at peace.
My body has been pushed to the limits and not in the way that I pumped too much iron in the gym and my muscles are having spasms. Having a special needs child means being an advocate. This is the toughest job I have ever been assigned. Fighting for her to have the life she deserves comes with heartache and a ton of paperwork and phone calls. I am a personal assistance to a 3 year old. I work as hard as the personal assistance to the stars, however, I have this job every minute of the day. She has 7 doctors and 4 therapists. The people I spend the most time on the phone with are insurance companies and medical supplies companies. She has to get monthly deliveries and fighting for her supplies is a frustrating battle. In the beginning, crying daily was a normal thing. I guess I have learned how to handle the situations better.
The reason I call her a gift is because of the people she has made my husband and I. We were already giving to the community by teaching, but now we are teaching others in a different way. We are teaching everyone that comes into contact with us how important life and family really is. Stop sweating the small things because there's a much bigger picture in life. We are meant to work as a community to help each other out while we are here on Earth. The world has seemed to forget this. I will push with every ounce in my body to get my daughter what she needs to have the most successful life she is capable of. But I do know that she has touched more lives in her 3 years of existence than I have my whole life. She shows others that if you have determination, you can work to get the things you need. No matter how sick she can be lying in a hospital, she will make the nurses laugh and smile at her. She feels the need to enlighten everyone's spirits. We can go to a restaurant and her main goal will be to get as many smiles from as many people as possible. How many of us can say that we do the same? She is 3 and is my role model.
I now look at special needs children and only see beauty. This is what my daughter has taught me. I hope that either my daughter or another special needs child can touch each and everyone's life. They really are special people.
Thank you God for granting me the opportunity to raise a child that is so inspiring to the world.
Only Olivia
On Saturday, we took her to the doctors to figure out what the bumps on her back were. She told us poison ivy. We told her that she has been sick and in the house, so we don't see how that's possible. That was the only diagnosis she was giving us.
We went to her neurologist for a routine check up yesterday and she told us that Liv has shingles. She even had another doctor come in to confirm. They told us to go back the doctor to get a diagnosis. We told them we might as well just go downstairs to the ER since the other doctor told us the wrong thing. It was confirmed that she has shingles at the age of 3.
We went to her neurologist for a routine check up yesterday and she told us that Liv has shingles. She even had another doctor come in to confirm. They told us to go back the doctor to get a diagnosis. We told them we might as well just go downstairs to the ER since the other doctor told us the wrong thing. It was confirmed that she has shingles at the age of 3.
Saturday, June 9, 2012
This Past Week
Liv was sick for several days. We had to cancel 2 appointments because of this. The first was was neurology, which we desperately need to go to since she had all of those episodes in March. It's usually so hard to get an appointment, but since we were rescheduling, she has one on Monday. We also had to reschedule her endocrinology appointment. We recently received a letter in the mail that her endocrinologist is leaving so i have no idea who her new doctor is going to be when we go to the appointment.
She started feeling better on Wednesday so I took her to the zoo. She was more interested in looking at books in the wagon that being in the petting zoo or even looking at animals for that matter.
Friday she had PT. She has learned how to climb up onto the couch independently. I think this new PT is working great. She fusses the whole time she is there, but we have seen a huge improvement in strength with just 3 sessions.
She developed a rash on her back that looks like poison. I don't know how she would get that since she was with me all week and she doesn't go outside much. Let alone how it would rub onto her back. I'm hoping to get her into the doctors today so we know for sure what it is and how to treat it.
She started feeling better on Wednesday so I took her to the zoo. She was more interested in looking at books in the wagon that being in the petting zoo or even looking at animals for that matter.
Friday she had PT. She has learned how to climb up onto the couch independently. I think this new PT is working great. She fusses the whole time she is there, but we have seen a huge improvement in strength with just 3 sessions.
She developed a rash on her back that looks like poison. I don't know how she would get that since she was with me all week and she doesn't go outside much. Let alone how it would rub onto her back. I'm hoping to get her into the doctors today so we know for sure what it is and how to treat it.
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