Yes, the Edwards have many things/people to be thankful for. Thank you to so many of our friends/family that have cried, helped with the girls, went to doc apt's, and most importantly prayed for/with us. What an amazing year that it has been, I am so thankful that we are another step closer to ensuring that Grace reaches her full potential.
It is such an incredible feeling to go to sleep with the peace that I have done everything that can/or should be done for a child, especially me being her mommy! I could not be anymore proud of Grace Marie, as Grace would tell you, Mommy is SO proud of me!!
I have so enjoyed this week with the girls. It was great to awake to each others voices and not the alarm clock. I cannot believe it is Wednesday, already.
Update
We received the results from the neuropsychologist last Thursday. Basically, her testing showed the same results as previous testing with an addition, that was not tested before. Her QEEG came back with the possibility that she could or has experience petit mal, seizures. Petit mals are the mildest of all seizures. Characterized as a starring spell that can last up to 15 seconds.
The encouraging news is that these seizures will not result in any further brain damage, and this finding is not a shock to us, we have know that most-often with CP it is a package deal of several other issues like seizures, autism, ADHD and so on.
So with that being said she also was diagnosed again (initial dx. was in spring of 2009) of having inattentive ADHD. Once again not a surprise but comforting to have the proof in writing to proceed with all necessary tools to help her reach that full potential.
We have had to get very strict on her diet, again, and the supplements and vitamins, too. But we are so thankful that she is not having to take any medications for seizures, etc.
Well, I have made my gluten/wheat free pie crusts, one for the chocolate/pecan pie (rice syrup in lieu of corn syrup) and ginger cookie pie crust for the pumpkin pie. The crusts taste great, and the pumpkin filling, too. I am a little concerned about the rice syrup, I'll update all at a later date on that! LOL
Tomorrow, will be the wheat/gluten free slow-cooker stuffing, and so on. Chris is handling the turkey, thank you, Jesus.
Happy Thanksgiving, we hope it is truly a blessed and wonderful day for all!!
Wednesday, November 24, 2010
Friday, November 12, 2010
Amazing Grace, how sweet that sounds...H
Several incredible things have happened since the last post.
We had our first IEP meeting. The meeting met and EXCEEDED our expectations.
I absolutely feel that God hand picked each person for that meeting. Many angels were amongst Chris and I as we sat there with the goal for Grace to reach her full potential. There were nine people and us, so 11 on the team.
Short story on the initial speech eval, Grace did not qualify on paper. However, one of 'the angel's asked a speech therapist to attend the meeting. The county school personnel were selling the point that she did truly need and could benefit greatly for speech. So it was added, especially for her pragmatic and tangential skills. It was so incredible I cannot do it justice in writing.
After hearing the evaluation read out loud we all agreed, easily, especially me, on the primary and secondary diagnoses. As I write this I am hesitate to type it. My fear is that others will look and treat her differently. I do not want her to be left out. However, I need to step out in faith and know that God is in control and we are helping others too by this blog. So as I take a deep breath,
the primary diagnosis is AUTISM SPECTRUM DISORDER
secondary is SPEECH, and ORTHOPEDIC IMPAIRMENT (OI)
So to update all. Grace received the diagnosis of PDD NOS from the developmental pediatrician on August 11th. PDD NOS is pervasive developmental disorder non-otherwise specified. This diagnosis is on the Autism line and PDD is in the middle and Aspergers is on the other end of the line. Grace is closer to Asperger's end.
The speech basically is helping her out with her who, what, why type questions, comprehension, social and cognitive functioning.
The OI, is due to her brain injury that she received in-utero due to my blood disorders which has caused her right sided hemi-paresis, and the PDD-NOS and possibly something else, This is typical for CP persons, it is usually not the only diagnosis.
So here is the IEP in condensed version.
On Mondays, she attends BLAST, for 1.5 hours. There are three therapist, with five children (3 boys, 2 girls) that basically have a classroom type setting and they teach proper interactions, etc. The therapists are a OT, PT and special education teacher.
On Wednesdays, she and her pre-school teacher (in her young-5's class) receive 30 minutes of in-classroom instruction and assistance.
On Thursdays, she goes to the elementary school after, her preschool day and has 30 minutes of PT and then 30 minutes of OT.
She exceeded expectations on her recent eye exam. She wore her patch each day for a few hours and she strengthen her right eye so much that it was a little bit stronger than her left!! So no patch for a while.
The orthopedic surgeon was singing AMAZING GRACE as he could not believe that she was right-hand dominate. He has never had a patient who was right-sided hemi-paresis who used their right hand, especially to the degree of Grace. She is a determined little lady. He told us that is the reason why she has full range of motion in her right upper extremity, because she is determined to use it. He also feels that she will do great and probably will not need the achilles release surgery!!! This so excites me!! She will need to have the procedure to cast her right leg for the high tone, tightness/contracture soon, and wear the night-time AFO and knee imbolizer.
We just got home from the new pediatric neurologist, who agrees with the ortho surgeon. She truly is amazing Grace. The MD can see the tone issues in her right upper extremity but is so surprised as how well she is doing with it. We really like this MD, she spend time with me (and our MRI/rad report) showing me the damage, gliosis on her brain in the periventricular white matter, and going over the findings. We only need to see her in three years or if we have a concern we want to address with her. The MD thinks that Grace will become a pediatric neurologists, since Grace was doing most of the self-exam herself. Yes, she took the MD's instruments and just started the physical eval!! too cute!!
All testing is over!!! We will get our last results for the neuro-psychologist on November 18th. We might need to see a pediatric hematologist early next year, but we should be done with the doctor visits for the year. Just therapies for now.
Please pray that all that work with Grace will continue to see her though Our Lord's eyes and especially assist in reaching her full potential, not anyone's potential, not just getting by, or to her normal age skills but to her God given full potential.
Please pray for Grace to continue to strive hard to get through the fatigue of her right side, primarily the right arm and leg.
Thank you so much for reading, following up with us, loving us, and most importantly praying. We cannot tell you how much it means, especially the comments. It gives me more strength and determination, thank you, oh, thank you!!!
Have an awesome holiday season, please stop and smell the roses, take an extra moment to extend grace to others, that is the best gift in our opinion this holiday season.
We had our first IEP meeting. The meeting met and EXCEEDED our expectations.
I absolutely feel that God hand picked each person for that meeting. Many angels were amongst Chris and I as we sat there with the goal for Grace to reach her full potential. There were nine people and us, so 11 on the team.
Short story on the initial speech eval, Grace did not qualify on paper. However, one of 'the angel's asked a speech therapist to attend the meeting. The county school personnel were selling the point that she did truly need and could benefit greatly for speech. So it was added, especially for her pragmatic and tangential skills. It was so incredible I cannot do it justice in writing.
After hearing the evaluation read out loud we all agreed, easily, especially me, on the primary and secondary diagnoses. As I write this I am hesitate to type it. My fear is that others will look and treat her differently. I do not want her to be left out. However, I need to step out in faith and know that God is in control and we are helping others too by this blog. So as I take a deep breath,
the primary diagnosis is AUTISM SPECTRUM DISORDER
secondary is SPEECH, and ORTHOPEDIC IMPAIRMENT (OI)
So to update all. Grace received the diagnosis of PDD NOS from the developmental pediatrician on August 11th. PDD NOS is pervasive developmental disorder non-otherwise specified. This diagnosis is on the Autism line and PDD is in the middle and Aspergers is on the other end of the line. Grace is closer to Asperger's end.
The speech basically is helping her out with her who, what, why type questions, comprehension, social and cognitive functioning.
The OI, is due to her brain injury that she received in-utero due to my blood disorders which has caused her right sided hemi-paresis, and the PDD-NOS and possibly something else, This is typical for CP persons, it is usually not the only diagnosis.
So here is the IEP in condensed version.
On Mondays, she attends BLAST, for 1.5 hours. There are three therapist, with five children (3 boys, 2 girls) that basically have a classroom type setting and they teach proper interactions, etc. The therapists are a OT, PT and special education teacher.
On Wednesdays, she and her pre-school teacher (in her young-5's class) receive 30 minutes of in-classroom instruction and assistance.
On Thursdays, she goes to the elementary school after, her preschool day and has 30 minutes of PT and then 30 minutes of OT.
She exceeded expectations on her recent eye exam. She wore her patch each day for a few hours and she strengthen her right eye so much that it was a little bit stronger than her left!! So no patch for a while.
The orthopedic surgeon was singing AMAZING GRACE as he could not believe that she was right-hand dominate. He has never had a patient who was right-sided hemi-paresis who used their right hand, especially to the degree of Grace. She is a determined little lady. He told us that is the reason why she has full range of motion in her right upper extremity, because she is determined to use it. He also feels that she will do great and probably will not need the achilles release surgery!!! This so excites me!! She will need to have the procedure to cast her right leg for the high tone, tightness/contracture soon, and wear the night-time AFO and knee imbolizer.
We just got home from the new pediatric neurologist, who agrees with the ortho surgeon. She truly is amazing Grace. The MD can see the tone issues in her right upper extremity but is so surprised as how well she is doing with it. We really like this MD, she spend time with me (and our MRI/rad report) showing me the damage, gliosis on her brain in the periventricular white matter, and going over the findings. We only need to see her in three years or if we have a concern we want to address with her. The MD thinks that Grace will become a pediatric neurologists, since Grace was doing most of the self-exam herself. Yes, she took the MD's instruments and just started the physical eval!! too cute!!
All testing is over!!! We will get our last results for the neuro-psychologist on November 18th. We might need to see a pediatric hematologist early next year, but we should be done with the doctor visits for the year. Just therapies for now.
Please pray that all that work with Grace will continue to see her though Our Lord's eyes and especially assist in reaching her full potential, not anyone's potential, not just getting by, or to her normal age skills but to her God given full potential.
Please pray for Grace to continue to strive hard to get through the fatigue of her right side, primarily the right arm and leg.
Thank you so much for reading, following up with us, loving us, and most importantly praying. We cannot tell you how much it means, especially the comments. It gives me more strength and determination, thank you, oh, thank you!!!
Have an awesome holiday season, please stop and smell the roses, take an extra moment to extend grace to others, that is the best gift in our opinion this holiday season.
Wednesday, September 22, 2010
IQ Evaluation complete!!
I was able to sit in during the entire evaluation. I really appreciated that since it helped me see exactly what they did and it gave me tremendous insight and peace.
Speaking of peace, I felt as though prayers were answered and in a BIG WAY today. Once again, all staff were so accommodating of their time and were very through-oh.
So the next step is when they grade/review the evaluations and testing and then they contact us to set up the first IEP meeting.
My gut (or a little bird whispered to me) tells me that she is going to be eligible for OI (orthopedic impairment) and SDD (significant developmental delay). I also feel confident that her least restrictive environment and where she will gain her greatest potential will continue to be at First Christian Preschool. Grace has come a long way and due to those gains we feel that she will not need to be in the DDK or special needs preschool. Also, if the school or her teacher asks for help in teaching Grace something specific or in a different way the county will bring someone out to help in her classroom. Another option that I am in agreement with is the fact that Grace will have her therapies at Silver City after her preschool so it will not take away from all that she is doing there.What a win-win, you have got to love that.
I am still awaiting the scheduling for her PT and Speech with Children's off Mansell. They are just so busy and so far away from us. I hope and pray, hint hint, that Grace Marie will qualify for KBW so she can get therapy close to home about 5 miles away instead of 35 miles away.
Wow, what a wonderful day, I am so exhausted and ready to just chill with the girls for a bit before Chris comes home.
Thank you again for all of the prayers, they came and in an incredible way!!!
Speaking of peace, I felt as though prayers were answered and in a BIG WAY today. Once again, all staff were so accommodating of their time and were very through-oh.
So the next step is when they grade/review the evaluations and testing and then they contact us to set up the first IEP meeting.
My gut (or a little bird whispered to me) tells me that she is going to be eligible for OI (orthopedic impairment) and SDD (significant developmental delay). I also feel confident that her least restrictive environment and where she will gain her greatest potential will continue to be at First Christian Preschool. Grace has come a long way and due to those gains we feel that she will not need to be in the DDK or special needs preschool. Also, if the school or her teacher asks for help in teaching Grace something specific or in a different way the county will bring someone out to help in her classroom. Another option that I am in agreement with is the fact that Grace will have her therapies at Silver City after her preschool so it will not take away from all that she is doing there.What a win-win, you have got to love that.
I am still awaiting the scheduling for her PT and Speech with Children's off Mansell. They are just so busy and so far away from us. I hope and pray, hint hint, that Grace Marie will qualify for KBW so she can get therapy close to home about 5 miles away instead of 35 miles away.
Wow, what a wonderful day, I am so exhausted and ready to just chill with the girls for a bit before Chris comes home.
Thank you again for all of the prayers, they came and in an incredible way!!!
Thursday, September 16, 2010
Prayers Answered!!!
So I am just thrilled to write that things are moving in a forward and positive direction.
Grace Marie had the occupational, physical, and speech therapy evaluations today. The speech was the real miracle. Here is how it went down....
I received a call from the school psychologist at 9:45 a.m. stating that she was going over her file with the OT and PT therapist!!! I was jumping for joy that they were being so proactive. What transpired after our conversation was that she was going to see if she could get speech to fit us in.
So yes, it happened. Although, Grace was spent after those three eval's. Therefore, we rescheduled the psychological evaluation for next Wednesday, September the 22nd at 11 a.m. The psychologists wants to do the full evaluation on her to ensure that she was capturing everything!!! wohoooo
Here is what we are thinking as of right now.
OT stated that she needed two times a week of OT through the school system.
PT is still writing up the report and should be completed by Friday.
After reviewing all my tests/forms and their evaluations they feel that she should most definitely get benefits through OHI (other health impairment) and or OI (orthopedic impairment).
Also, we all agree, as of right now, that the least restrictive environment is for Grace to stay in the young five's class at First Christian Preschool and do therapies at Silver City in the afternoon. This is a win/win!
As of right now the school system cannot give benefits though the speech department because it will not enhance her education/learning, during school. They do agree with my testing, etc. however, they are bound by the criteria.
Off, we went to her cardiology apt. We are again pleased to announce that there in no presence of a heart murmur and her valvar lung stenosis will not create any issues for her currently or in the future. Basically, her lining is thin and more narrow than most but will not create any issues for her even if she has my blood disorders! Praise Jesus!!!! Also, the whole in the heart valve that was late to close upon her birth has continued to be better than ever so no issues to pertain to there. We have been cleared from the cardiologists so no more check-ups needed!!!
So while I was down in Alpharetta we skipped over to Children's so I could discuss her potential outside PT, Speech and possibly O, give them the doc's orders and what not's. They are getting things together and will contact me to schedule next week.
My prayer right now is for the private therapy to begin quickly and that they can accommodate our schedule. I am praying that the therapies can run consecutive (as long as she can handle it) and in the late afternoon. I need to get Gabrielle home and Chris can bring Grace home after her therapies. So we can get home after school have a good lunch, relax and then head down to Children's. All of these appointments have been a strain on Gabrielle especially.
Other specific prayer requests are for the psych eval, (full IQ eval) next week, and most importantly that I get the KBW paperwork completed this weekend.
I cannot thank everyone enough for your prayers, support, love and celebrations, too. I have never celebrated my birthday so much than this years, the big one, and all the celebrations have been wonderful. My cup is still running over, my love tank is full!!
Grace Marie had the occupational, physical, and speech therapy evaluations today. The speech was the real miracle. Here is how it went down....
I received a call from the school psychologist at 9:45 a.m. stating that she was going over her file with the OT and PT therapist!!! I was jumping for joy that they were being so proactive. What transpired after our conversation was that she was going to see if she could get speech to fit us in.
So yes, it happened. Although, Grace was spent after those three eval's. Therefore, we rescheduled the psychological evaluation for next Wednesday, September the 22nd at 11 a.m. The psychologists wants to do the full evaluation on her to ensure that she was capturing everything!!! wohoooo
Here is what we are thinking as of right now.
OT stated that she needed two times a week of OT through the school system.
PT is still writing up the report and should be completed by Friday.
After reviewing all my tests/forms and their evaluations they feel that she should most definitely get benefits through OHI (other health impairment) and or OI (orthopedic impairment).
Also, we all agree, as of right now, that the least restrictive environment is for Grace to stay in the young five's class at First Christian Preschool and do therapies at Silver City in the afternoon. This is a win/win!
As of right now the school system cannot give benefits though the speech department because it will not enhance her education/learning, during school. They do agree with my testing, etc. however, they are bound by the criteria.
Off, we went to her cardiology apt. We are again pleased to announce that there in no presence of a heart murmur and her valvar lung stenosis will not create any issues for her currently or in the future. Basically, her lining is thin and more narrow than most but will not create any issues for her even if she has my blood disorders! Praise Jesus!!!! Also, the whole in the heart valve that was late to close upon her birth has continued to be better than ever so no issues to pertain to there. We have been cleared from the cardiologists so no more check-ups needed!!!
So while I was down in Alpharetta we skipped over to Children's so I could discuss her potential outside PT, Speech and possibly O, give them the doc's orders and what not's. They are getting things together and will contact me to schedule next week.
My prayer right now is for the private therapy to begin quickly and that they can accommodate our schedule. I am praying that the therapies can run consecutive (as long as she can handle it) and in the late afternoon. I need to get Gabrielle home and Chris can bring Grace home after her therapies. So we can get home after school have a good lunch, relax and then head down to Children's. All of these appointments have been a strain on Gabrielle especially.
Other specific prayer requests are for the psych eval, (full IQ eval) next week, and most importantly that I get the KBW paperwork completed this weekend.
I cannot thank everyone enough for your prayers, support, love and celebrations, too. I have never celebrated my birthday so much than this years, the big one, and all the celebrations have been wonderful. My cup is still running over, my love tank is full!!
Wednesday, September 8, 2010
What a vacation!!!!
Oh, how my cup is overfilled with contentment, joy, and peace! What a wonderful time. Wow, what an incredible blessing that my great friend showered us with. I was able to relax on the beach and fall asleep, I needed this down time to just be me a silly girlfriend and put the wife and mommy hats down for a bit. It was difficult being away from my family but oh, how wonderful!!!
Today is Grace Marie's five year-old check up with the pediatrician. Yes, a bit late but that is how insurance roles, it has to be 365 days later and each year it get later and later due to schedule and times. I am praying that it will be a productive meeting as we have a lot to fill her in on.
We hope and pray that you had a wonderful holiday weekend.
Today is Grace Marie's five year-old check up with the pediatrician. Yes, a bit late but that is how insurance roles, it has to be 365 days later and each year it get later and later due to schedule and times. I am praying that it will be a productive meeting as we have a lot to fill her in on.
We hope and pray that you had a wonderful holiday weekend.
Wednesday, September 1, 2010
Hello...
All went great yesterday. Grace got her new glasses and they are so adorable on her. She picked them herself and she got a new glass case that is powder pink that looks like a little Kate Spade purse. She loves it. She is trying to get used to the transition lenses. I am hoping that this will help her when she is outside. She tends to look down a lot outside due to the sun, so hopefully this will help her gait and posture.
The neurologist stated that I cannot hurt my brain anymore at this point, unless I hit it again. I am guessing that he was stating another good blow again, and not for example, me hitting my head in the garage and on the closet molding and another place that I cannot remember right now! HA
I feel fine, he stated that I have a pretty good concussion probably grade II or III, based on my signs and symptoms. There is no way for him to detect when my symptoms will subside, they should usually disappear in two weeks, which is today. So we will see. I have no activity limitation, wahoo hooo!!! Just take my time if symptoms get worse. Also, the worst that could happen, but not likely is I with activity could just get really dizzy and nauseated, but he would be surprised if it lead to passing out or vomiting!! Personally, I cannot wait to get some of my memory back. I spend about five minutes trying to figure out which way to get to that appointment on Monday, I have only been there at least five times in the past two weeks!! CRAZY!!!
So I hope I did not scare anyone in my previous blog. I promise I am harmless. I needed to purge the frustation at how long I have been at this (over 2+ years) and not where I want to be in helping her reach her full potential. Please pray that anyone who evaluates her sees her through God's eye's and mine too. No one knows her better than us. She is so intelligent, she knows when she is being evaluated and I see her 'playing for the camera'.
Last night, she told me that she loved me because I help her to learn. I think she said that because she heard me at the meeting express that I wanted the skills/tools/team to help her learn.
I am off for some much needed R&R! Will post again the week of September 10th. Have a wonderful Labor Day weekend, be a blessing to others, mindful of your time and be safe!
The neurologist stated that I cannot hurt my brain anymore at this point, unless I hit it again. I am guessing that he was stating another good blow again, and not for example, me hitting my head in the garage and on the closet molding and another place that I cannot remember right now! HA
I feel fine, he stated that I have a pretty good concussion probably grade II or III, based on my signs and symptoms. There is no way for him to detect when my symptoms will subside, they should usually disappear in two weeks, which is today. So we will see. I have no activity limitation, wahoo hooo!!! Just take my time if symptoms get worse. Also, the worst that could happen, but not likely is I with activity could just get really dizzy and nauseated, but he would be surprised if it lead to passing out or vomiting!! Personally, I cannot wait to get some of my memory back. I spend about five minutes trying to figure out which way to get to that appointment on Monday, I have only been there at least five times in the past two weeks!! CRAZY!!!
So I hope I did not scare anyone in my previous blog. I promise I am harmless. I needed to purge the frustation at how long I have been at this (over 2+ years) and not where I want to be in helping her reach her full potential. Please pray that anyone who evaluates her sees her through God's eye's and mine too. No one knows her better than us. She is so intelligent, she knows when she is being evaluated and I see her 'playing for the camera'.
Last night, she told me that she loved me because I help her to learn. I think she said that because she heard me at the meeting express that I wanted the skills/tools/team to help her learn.
I am off for some much needed R&R! Will post again the week of September 10th. Have a wonderful Labor Day weekend, be a blessing to others, mindful of your time and be safe!
Monday, August 30, 2010
***WARNING, WARNING***DO NOT PROCEED UNLESS YOU HEED THIS ADVISORY!!
As the title states, what you are about to embark on needs to be considered with extreme caution because your actions will be used against you...so if you feel that you can continue reading the below raw, real, reguritation feel free. However, I need a plethora of grace, love, mercy, and prayers!! Yes, what you are about to embark on is an extreme pity party!!!! So if there is a slight chance that your opinion of me might change STOP do not proceed. Remember you were warned! I thank you!!!
So I thought it was best to blog now rather than later. Too many times I wait and get logical, less emotional etc. However, with my recent concussion it is best to start now, to help with details and for therapeutic reasons, too.
We had our appointment, I was given more paperwork to fill out while they were giving Grace Marie some of their congnitive/IQ testing. they were finished in less than 15 minutes and I was not even 25% finished with my paperwork. Of, course, I forgot to bring my binder in and failed to take notes as they were going over the results with me. Basically, she scored average or a little below average.
Thankfully, they are continuing to proceed with me to try to get some eligibility. Our next appointment is on Thursday, September 16th. Yes, more evaluations and waiting.
I am just so exhausted, frustrated and impatient!!! It is so backwards and a frustation or pet peeve that I have seen time and time again. No help, benefits or breaks for the mild to moderate cases. I especially feel that we are being penalized for the advancements/progress that we have made. This is so incredibly difficult, especially financially. Grace Marie will need just physical therapy at least for her entire life, not to mention any braces, surgeries and what not.
I so appreciate the help that they have and hopefullly will continue to give us. I honestly feel that the desire is there and they can only do what they can do. But I am literally at the end of my rope! God I need a break, please throw me another bone that I can chew on for a good six months, a nice big and juicy one!!!
Yes, my head is just killing me! I must have over done it this weekend, but I promise I did nothing but mild activity. I have an appointment with a neurologist tomorrow at 10:45 a.m. Please pray that this doc will want to really get into the meat of things, regarding the concussion, what to expect, time table to increase activity, something to help with my dizziness, confusion, headaches, tinnitus and nausea. Yes, this is probably why I am having such a pity party!!! We so love Grace Marie and will continue to do anything for her. However, it is very hard to take time for ourselves and our marriage. It is so frustating that there is no expendable income, we have the lowest cable and phone service possible but I still feel guilty about trying to plan a short getaway with my husband. We have not had a trip alone in over six years now.Yes, logically, I know we should do it but at what financial cost!!!! Ugh!!
My mother has been so incredible at helping us. She watches the girls when I have appointments, and has them over for sleepovers. I know she has helped us to continue to have an incredible and happy marriage, we cannot thank her enough, ever.
I just feel that I have no faith which is ridiculous isn't it. It should be so easy and mature to have faith. While driving when leaving the appointment, I kept thinking of the apostles and Jesus in the boat. How they were all freaking out about the storm. I thought I am losing my drive and faith over this! I cannot imagine if I was in their position. But then I started to think, each person handles things differently. I tend to excel at BIG ISSUES and just get so overwhelmed at what are considered minor things.
The littles can produce a BIG WOW or a BIG BANG. Well, I am done, hope it wasn't too painful, because I feel much better!!! As always thank you so much for following and praying, we all need it!!!
So I thought it was best to blog now rather than later. Too many times I wait and get logical, less emotional etc. However, with my recent concussion it is best to start now, to help with details and for therapeutic reasons, too.
We had our appointment, I was given more paperwork to fill out while they were giving Grace Marie some of their congnitive/IQ testing. they were finished in less than 15 minutes and I was not even 25% finished with my paperwork. Of, course, I forgot to bring my binder in and failed to take notes as they were going over the results with me. Basically, she scored average or a little below average.
Thankfully, they are continuing to proceed with me to try to get some eligibility. Our next appointment is on Thursday, September 16th. Yes, more evaluations and waiting.
I am just so exhausted, frustrated and impatient!!! It is so backwards and a frustation or pet peeve that I have seen time and time again. No help, benefits or breaks for the mild to moderate cases. I especially feel that we are being penalized for the advancements/progress that we have made. This is so incredibly difficult, especially financially. Grace Marie will need just physical therapy at least for her entire life, not to mention any braces, surgeries and what not.
I so appreciate the help that they have and hopefullly will continue to give us. I honestly feel that the desire is there and they can only do what they can do. But I am literally at the end of my rope! God I need a break, please throw me another bone that I can chew on for a good six months, a nice big and juicy one!!!
Yes, my head is just killing me! I must have over done it this weekend, but I promise I did nothing but mild activity. I have an appointment with a neurologist tomorrow at 10:45 a.m. Please pray that this doc will want to really get into the meat of things, regarding the concussion, what to expect, time table to increase activity, something to help with my dizziness, confusion, headaches, tinnitus and nausea. Yes, this is probably why I am having such a pity party!!! We so love Grace Marie and will continue to do anything for her. However, it is very hard to take time for ourselves and our marriage. It is so frustating that there is no expendable income, we have the lowest cable and phone service possible but I still feel guilty about trying to plan a short getaway with my husband. We have not had a trip alone in over six years now.Yes, logically, I know we should do it but at what financial cost!!!! Ugh!!
My mother has been so incredible at helping us. She watches the girls when I have appointments, and has them over for sleepovers. I know she has helped us to continue to have an incredible and happy marriage, we cannot thank her enough, ever.
I just feel that I have no faith which is ridiculous isn't it. It should be so easy and mature to have faith. While driving when leaving the appointment, I kept thinking of the apostles and Jesus in the boat. How they were all freaking out about the storm. I thought I am losing my drive and faith over this! I cannot imagine if I was in their position. But then I started to think, each person handles things differently. I tend to excel at BIG ISSUES and just get so overwhelmed at what are considered minor things.
The littles can produce a BIG WOW or a BIG BANG. Well, I am done, hope it wasn't too painful, because I feel much better!!! As always thank you so much for following and praying, we all need it!!!
Friday, August 27, 2010
Sometimes you have just got to laugh!
Grace Marie takes things, literally literal! LOL
I forget sometimes, like this afternoon. Here is the story;
I hardly talk on the phone around the girls so when I am on the phone I do not think that it is too much to ask for the girls to not interrupt me, right! Well, the past weeks have been especially hard. Chris called me to say he was on his way home and as we were talking I kept getting interrupted so I stopped and asked her to not interrupt me again unless her panties were on fire.
Yes, you guessed it, she took her panties and all clothing off and would not put it back on. Too funny, but serious I know. So I had to explain to her that it was an expression.
Good news she has her pajamas on and is in bed sleeping like an angel. Thank you Lord, for your help! :-)
Have a great weekend, thank you for the prayers, again!!
I forget sometimes, like this afternoon. Here is the story;
I hardly talk on the phone around the girls so when I am on the phone I do not think that it is too much to ask for the girls to not interrupt me, right! Well, the past weeks have been especially hard. Chris called me to say he was on his way home and as we were talking I kept getting interrupted so I stopped and asked her to not interrupt me again unless her panties were on fire.
Yes, you guessed it, she took her panties and all clothing off and would not put it back on. Too funny, but serious I know. So I had to explain to her that it was an expression.
Good news she has her pajamas on and is in bed sleeping like an angel. Thank you Lord, for your help! :-)
Have a great weekend, thank you for the prayers, again!!
Thursday, August 26, 2010
Let the KBW packet begin...
If you know anything about me, I just love all types of weather. So this temporary design is actually soothing to me, no worries!!! :-)
I so appreciate all of the help that I have received and will continue to receive especially with the KBW packet. Big prayers are needed yet again! My personality is so going to be stretched during this process.
Lord God please continue to instill in me the 'I can do it, we can do it, it is needed' attitude. We are worthy and will honor and continue to honor you Oh, Lord with all thy blessings! AMEN!!!
I so appreciate all of the help that I have received and will continue to receive especially with the KBW packet. Big prayers are needed yet again! My personality is so going to be stretched during this process.
Lord God please continue to instill in me the 'I can do it, we can do it, it is needed' attitude. We are worthy and will honor and continue to honor you Oh, Lord with all thy blessings! AMEN!!!
Wednesday, August 25, 2010
HUGE PRAISE!!!!
So, I never answer our land line, why because it is always robo-calls or solicitors. However, I had a feeling and guess what it was the school system. Our evaluation is on Monday, the 30th, at 10:30 a.m. Yes, I am so excited because my persistence was borderline 'stalker'. Ha Ha
I wanted to send out a big thank you for the many comments I have received. It is so uplifting, just what we need!! Please keep it coming!! LOL
A BIG ENORMOUS HUGE thank you for everyone's prayers. We are so blessed and thankful that each of you and Our Lord God made this happen!!!
I wanted to send out a big thank you for the many comments I have received. It is so uplifting, just what we need!! Please keep it coming!! LOL
A BIG ENORMOUS HUGE thank you for everyone's prayers. We are so blessed and thankful that each of you and Our Lord God made this happen!!!
Tuesday, August 24, 2010
Busy busy busy
On Monday, the 23rd, I had the initial appointment with the neuro-psychologist. It was a three hour meeting after I filled out most of the paperwork. To sum it up, I will invite this doc to join our team.
This is exactly what I prayed for, an in dept conversation regarding the damage in the brain, area, and ways to repair/improve. Also, discussed was the testing that will be submitted to insurance. We should hear back from the insurance company within two to three weeks regarding approval/coverage.
Today, Grace had her eye appointment. Unfortunately, her right eye muscles are weakening. Her protocol for the next 12 weeks will be to wear a patch on her left eye for about two hours a day. If her muscles do not strengthen on their own before she turns six (in 11 months), they will stall. So it is GO GO time for that.
We also had to get new glasses, current ones have really run their course. Grace picked out a lovely pair! She should get her new glasses in about a week.
We then had her molding done for her new AFO (brace). She designed a blue brace with yellow and orange daisies and baby blue straps. She should get her new brace in about three weeks.
Her cardiology appointment will be in about two weeks, so please pray that all continues to be stellar with her heart!!!
No, I have not heard back from the school system. I am sure that they are quite busy, however, I am just pleading for prayers that we hear back from them ASAP and get an date/time to get an IEP done. Yes, I am speaking forth the eligibility approval. Also, please pray that I can get the KBW packet submitted and approved, too!!!
Thank you so much for following this blog. We so really appreciate your prayers!
This is exactly what I prayed for, an in dept conversation regarding the damage in the brain, area, and ways to repair/improve. Also, discussed was the testing that will be submitted to insurance. We should hear back from the insurance company within two to three weeks regarding approval/coverage.
Today, Grace had her eye appointment. Unfortunately, her right eye muscles are weakening. Her protocol for the next 12 weeks will be to wear a patch on her left eye for about two hours a day. If her muscles do not strengthen on their own before she turns six (in 11 months), they will stall. So it is GO GO time for that.
We also had to get new glasses, current ones have really run their course. Grace picked out a lovely pair! She should get her new glasses in about a week.
We then had her molding done for her new AFO (brace). She designed a blue brace with yellow and orange daisies and baby blue straps. She should get her new brace in about three weeks.
Her cardiology appointment will be in about two weeks, so please pray that all continues to be stellar with her heart!!!
No, I have not heard back from the school system. I am sure that they are quite busy, however, I am just pleading for prayers that we hear back from them ASAP and get an date/time to get an IEP done. Yes, I am speaking forth the eligibility approval. Also, please pray that I can get the KBW packet submitted and approved, too!!!
Thank you so much for following this blog. We so really appreciate your prayers!
Friday, August 20, 2010
Specific Prayer Request
We have not heard back from the school system, yet, to get a date/time for full evaluation. It would be great if I could get a call today with an appointment time for next week!
On Monday, August 23rd I meet with the Neuro Psychologist to begin that process. My prayer for this is that we can get this process all wrapped up with the results by next Friday.
We were very fortunate enough to call this past Monday and got an earlier appointment with the developmental pediatrician. This appointment proved to be very beneficial with affirmation that we are going in the proper direction towards Grace reaching her full potential.
I wanted to put out my deepest and sincerest THANK YOU to everyone for your hand, time and prayers. We are so blessed to have such and incredible group of loved ones. A big thank you to my mother, Linda, and Nan. This week would not of happened without you. So thank you thank you!!!
On Monday, August 23rd I meet with the Neuro Psychologist to begin that process. My prayer for this is that we can get this process all wrapped up with the results by next Friday.
We were very fortunate enough to call this past Monday and got an earlier appointment with the developmental pediatrician. This appointment proved to be very beneficial with affirmation that we are going in the proper direction towards Grace reaching her full potential.
I wanted to put out my deepest and sincerest THANK YOU to everyone for your hand, time and prayers. We are so blessed to have such and incredible group of loved ones. A big thank you to my mother, Linda, and Nan. This week would not of happened without you. So thank you thank you!!!
Friday, August 13, 2010
Paper and File Complete
Our file has been turned over to the review department for eligibility. We do not have the neuro-psych eval, as of yet but that process begins on August 23rd. We made sure that we made an impression on the gate-keepers and the decision makers. Grace wore her new sporty orange Adidas and a shirt to match. I did my part by letting her light shine and ensuring that all had a face to put with our names.
Now I wait for them to contact me (I will be calling Monday morning to check-in) for the full evaluation appointment. They have room in the program if we decide that is a better place for her and of course the least restrictive environment. I am trying to focus on the peace in the fact that we have an incredible private pre-K and a private therapy location too.
Please pray that we are approved for eligibility and that I continue to have peace and not let my flesh and fear cloud it.
Thank you so much have an incredible weekend. Audra
Now I wait for them to contact me (I will be calling Monday morning to check-in) for the full evaluation appointment. They have room in the program if we decide that is a better place for her and of course the least restrictive environment. I am trying to focus on the peace in the fact that we have an incredible private pre-K and a private therapy location too.
Please pray that we are approved for eligibility and that I continue to have peace and not let my flesh and fear cloud it.
Thank you so much have an incredible weekend. Audra
Thursday, August 12, 2010
Big prayers requested for tomorrow
So tomorrow morning we have a hearing test at 8:30 am for Grace and then an appointment at 9:30 am with the public school system.
Our goal is to pass the hearing test, will be shocked if she does not. Get an evaluation ASAP. I spoke with the necessary people and they have instructed me to give their name and say that they want an evaluation.
I am getting all paperwork needed together and copies now. I just pray that the OT evaluation is ready before 5pm today.
So specific prayer request that was get the evaluation ASAP to get Grace in the 'least restrictive' environment to help her reach her full potential and to especially help with her regression and recoupment issues from the past couple of months. This has been really really hard for me because I have really tried a lot!!!
Also, pray that we hear God's ultimate discernment/wisdom as we make our decisions as to what treatment to do next and the financial means to go forward with recommended treatment protocols.
Thank you so very much.
Our goal is to pass the hearing test, will be shocked if she does not. Get an evaluation ASAP. I spoke with the necessary people and they have instructed me to give their name and say that they want an evaluation.
I am getting all paperwork needed together and copies now. I just pray that the OT evaluation is ready before 5pm today.
So specific prayer request that was get the evaluation ASAP to get Grace in the 'least restrictive' environment to help her reach her full potential and to especially help with her regression and recoupment issues from the past couple of months. This has been really really hard for me because I have really tried a lot!!!
Also, pray that we hear God's ultimate discernment/wisdom as we make our decisions as to what treatment to do next and the financial means to go forward with recommended treatment protocols.
Thank you so very much.
Wednesday, August 11, 2010
PART 2
If the surgery is recommended Dr. Bruce with Denise the NP, do the percutaneous heel cord lengthening procedure, which is less invasive. No cutting, ie. long scar.
Also, during the appointment it was mentioned by the NP that Grace would need physical therapy for life and a good amount. I discussed the results of her recent PT evaluation and she the NP agreed with me that Grace should be having PT three times a week so we have a Rx in hand for that and the PLS AFO. The diagnosis codes that were used are
343.1, congential hemiplegia
727.81, contracture of tendon
Denise also feels that will all of the PT and protocols and our dedication that Grace should be able to play any sport she wishes and do well. She gave an example of a woman that was in NP classes with her and for years no one knew that she had CP, hemiplegia or right diplegia like our sweet baby Grace. They only noticed a slight limp after a 20 hours work-day at the hospital, and yes this woman finished top of her class.
Prayer request is please pray that I can be steadfast, detailed, and efficient in getting the KBW paperwork together to get an approval. We so need this for Grace to do these therapies and treatments for now and for her future. Thank you so very much for your prayers!!!
I have tried for 20 minutes to get this post brighter, I am clueless and going to bed it must be an eternal glitch! :-) Good night, sleep tight!
The Latest with the Edwards
So as quickly as Grace started to walk on her heels, she stopped. Yes, it would be great to know the exact reason why she started and then why she stopped. However, this is not heaven! So I am sure it is a combination of the brace, her reminding herself, the Feldenkrais, our PT exercises and so on and so on as it always goes. We kept up the Feldenkrais but had to stop in August simply due to financial reasons. So of course I always have another plan.
Last week Grace Marie had a PT and OT evaluation. Got the results back on the PT yesterday. So in a nutshell, she is delayed and the Peabody testing, according the the therapist had her age as 4yr. 11months, not 5 yr. 1 month. She came back in the 25th percentile in all testing areas. She was tested for about 45 minutes with her AFO brace on. PT recommended therapy once a week. We will get the OT results sometime tomorrow.
Had a much anticipated appointment with the NP at the orthopedic surgeon's office. The NP, Denise, reviewed the MRI of her head and spine from November of '09. She stated that she did not want to do the surgery at this point, but wanted to do another round of BOTOX and casting. They administer this differently than at the Neurologists office. BOTOX is given under general anesthesia, with a mask no IV. Therefore, the patient is not scared out of their minds thinking someone is going to put another hole in their leg, yes, Grace's thoughts, every time we go to another apt. They can get the perfect location, and then the patient is relaxed and the leg can be placed in the proper flexion to have the cast put on. The cast will be below the knee like before and she will wear a brace to ensure that her leg is stretched out while sleeping so the hamstring does not get tight, like before. This will also give the proper stretch. The cast will need to be on for two to six weeks. Then wait and see for up to four or five months. Each person reacts differently to the medication, casting and growth spurts, etc.
Then another evaluation is done to see if this needs to be repeated. If so just one more time. Then surgery if needed, and only if needed and their goal is only one surgery.
We need to get her another brace and or ankle foot orthotic AFO this time but another kind that she would like her to try, PLS, Posterior leaf spring, or brace within the next month if possible.
Here is a great article studying the different types of AFO's and the areas of improvements.
http://gait.aidi.udel.edu/gaitlab/gcma/info/abstracts/P29.abs20111.pdf
http://emedicine.medscape.com/article/314838-overview
Another great article giving practical ideas for use of which type of orthotic for our main concern which is equinus, or toe walking.
http://www.fillauer.com/education/ED_afo.html
Last week Grace Marie had a PT and OT evaluation. Got the results back on the PT yesterday. So in a nutshell, she is delayed and the Peabody testing, according the the therapist had her age as 4yr. 11months, not 5 yr. 1 month. She came back in the 25th percentile in all testing areas. She was tested for about 45 minutes with her AFO brace on. PT recommended therapy once a week. We will get the OT results sometime tomorrow.
Had a much anticipated appointment with the NP at the orthopedic surgeon's office. The NP, Denise, reviewed the MRI of her head and spine from November of '09. She stated that she did not want to do the surgery at this point, but wanted to do another round of BOTOX and casting. They administer this differently than at the Neurologists office. BOTOX is given under general anesthesia, with a mask no IV. Therefore, the patient is not scared out of their minds thinking someone is going to put another hole in their leg, yes, Grace's thoughts, every time we go to another apt. They can get the perfect location, and then the patient is relaxed and the leg can be placed in the proper flexion to have the cast put on. The cast will be below the knee like before and she will wear a brace to ensure that her leg is stretched out while sleeping so the hamstring does not get tight, like before. This will also give the proper stretch. The cast will need to be on for two to six weeks. Then wait and see for up to four or five months. Each person reacts differently to the medication, casting and growth spurts, etc.
Then another evaluation is done to see if this needs to be repeated. If so just one more time. Then surgery if needed, and only if needed and their goal is only one surgery.
We need to get her another brace and or ankle foot orthotic AFO this time but another kind that she would like her to try, PLS, Posterior leaf spring, or brace within the next month if possible.
Here is a great article studying the different types of AFO's and the areas of improvements.
http://gait.aidi.udel.edu/gaitlab/gcma/info/abstracts/P29.abs20111.pdf
http://emedicine.medscape.com/article/314838-overview
Another great article giving practical ideas for use of which type of orthotic for our main concern which is equinus, or toe walking.
http://www.fillauer.com/education/ED_afo.html
Sunday, June 13, 2010
Another amazing update of positive progress
Went to the 2nd lesson and Ellen worked on her hips and getting her to stand in the proper way and it is amazing on how hungry and tired that Grace gets during these lessons. Her brain is just soaking up so much information. Grace is now walking on her heels all the time and her gait is perfect, her toe is pointing forward, her knees and hips are now moving together smoothly! I am so amazed! I cannot express how incredible that Feldenkrais is on CP especially before any surgery of the nerves have taken place. I am so few on words. I need to get a video on here. I wish I had a before video but not sure of we have one where she is walking by coincidence.
Friday, June 11, 2010
Feldenkrais lesson update
We just had our 2nd lesson of Feldenkrais with Ellen. Our first was last month the day before our vacation. Grace really took to Ellen quickly, I believe that she sensed the authenticity that pored out of Ellen.
After the 1st lesson I did notice that Grace started to walk differently. However, that difference has continue to happen in duration and intensity. Grace is walking on both feet (especially when she is walking with a slow pace). It is very encouraging to see her senses in her heel awaken to the signals the brain is learning. Yes, this feels correct, this is how my gait should be. We have another lesson tomorrow morning. I will make it a priority to post during the next month on the happens so it will be remembered.
After the 1st lesson I did notice that Grace started to walk differently. However, that difference has continue to happen in duration and intensity. Grace is walking on both feet (especially when she is walking with a slow pace). It is very encouraging to see her senses in her heel awaken to the signals the brain is learning. Yes, this feels correct, this is how my gait should be. We have another lesson tomorrow morning. I will make it a priority to post during the next month on the happens so it will be remembered.
Wednesday, April 21, 2010
Fond of Feldenkrais
Well, what a wonderful day! Grace Marie really liked Ms. Therese and vice versa. This is the FIRST time every that Grace has giggled, was relaxed and all around comfortable for a therapy (aka, lesson). Yes, it was in our home so that could of helped BUT she is never really relaxed and excited to do her PT exercises/stretches with us at home or anyone elsewhere!
Then the HUGE, INCREDIBLE breakthrough happened at swimming tonight. Toward the end of swimming Grace Marie announced to Ms. Donna and myself that she had a strong leg and pat patted her right leg!!! Then she started kicking her right leg better than I have ever EVER seen AND she was kicking her left leg too in perfect swimming kicks. Yes, this is a FIRST, so yes, of course I had tears of JOY, HAPPY HAPPY JOY JOY!!!
We will see Ms. Therese on Saturday evening and then we will see Ms. Ellen in a month. A little background of how blessed that we feel. Ms. Therese received most of her mentoring from Ms. Ellen and Anat. Ms. Ellen received her training from Moshe Feldenkrais and Anat. Therefore, we could not be in better hands.
Have a wonderful day and thank you so much for your continued encouragement, prayers and support!
Then the HUGE, INCREDIBLE breakthrough happened at swimming tonight. Toward the end of swimming Grace Marie announced to Ms. Donna and myself that she had a strong leg and pat patted her right leg!!! Then she started kicking her right leg better than I have ever EVER seen AND she was kicking her left leg too in perfect swimming kicks. Yes, this is a FIRST, so yes, of course I had tears of JOY, HAPPY HAPPY JOY JOY!!!
We will see Ms. Therese on Saturday evening and then we will see Ms. Ellen in a month. A little background of how blessed that we feel. Ms. Therese received most of her mentoring from Ms. Ellen and Anat. Ms. Ellen received her training from Moshe Feldenkrais and Anat. Therefore, we could not be in better hands.
Have a wonderful day and thank you so much for your continued encouragement, prayers and support!
Tuesday, April 20, 2010
Big day tomorrow!!!
Just the facts:
Have a 2nd opinion with a ped. neuro. in November, yes, this is the earliest apt. she is the expert in CP so we are more than thankful to wait.
In February of 2011, we have an apt. with a developmental pediatrician, who got into medicine with CP as his focus. Yes, this was the earliest apt. and as you can imagine the cancellation rate for him is less than 2%. We could see him earlier at his private practice, however, they do not take insurance and I cannot convince our insurance company to pay at this location due to the time difference. It would be just for the 1st visit $950.00 out-of-pocket. We so wish we could do it but we cannot.
We will not be seeing the ped. ortho. achilles release is not in her future! We will try other things first because that is a decision with a lot of permanent and 'domino effect' conditions for the rest of her life.
The great news, while I am holding my breath is that I found a new 'type' of therapy for Grace to do in the meantime. It is called the Feldenkrais Method. I have heard that this is by far the BEST therapy for CP patients. I am not going to try to explain because I know that I will not be able to do it justice. The man who created it Moshe Feldenkrais wrote several books and his title to one book, The Elusive Obvious (aka, Basic Feldenkrais) sums it up. It is so easy that it is hidden! This therapy is also used for sport injuries, etc.
Well, we are very excited because the first lesson is tomorrow! I am trying to contain my excitement but I am so happy that we are doing something. I just hope and pray that the Botox does not hinder any results that she can make early on. Every time I look at Grace Marie's calf, reality sets in. She has great calf muscles from the toe-walking but since that Botox there is not muscle definition at all.
Swimming is going great. She is having trouble kicking but that is to be expected. Hopefully, Feldenkrais will help with that too.
I would love to hear your thoughts and as always thank you for your prayers and all!!!
Have a 2nd opinion with a ped. neuro. in November, yes, this is the earliest apt. she is the expert in CP so we are more than thankful to wait.
In February of 2011, we have an apt. with a developmental pediatrician, who got into medicine with CP as his focus. Yes, this was the earliest apt. and as you can imagine the cancellation rate for him is less than 2%. We could see him earlier at his private practice, however, they do not take insurance and I cannot convince our insurance company to pay at this location due to the time difference. It would be just for the 1st visit $950.00 out-of-pocket. We so wish we could do it but we cannot.
We will not be seeing the ped. ortho. achilles release is not in her future! We will try other things first because that is a decision with a lot of permanent and 'domino effect' conditions for the rest of her life.
The great news, while I am holding my breath is that I found a new 'type' of therapy for Grace to do in the meantime. It is called the Feldenkrais Method. I have heard that this is by far the BEST therapy for CP patients. I am not going to try to explain because I know that I will not be able to do it justice. The man who created it Moshe Feldenkrais wrote several books and his title to one book, The Elusive Obvious (aka, Basic Feldenkrais) sums it up. It is so easy that it is hidden! This therapy is also used for sport injuries, etc.
Well, we are very excited because the first lesson is tomorrow! I am trying to contain my excitement but I am so happy that we are doing something. I just hope and pray that the Botox does not hinder any results that she can make early on. Every time I look at Grace Marie's calf, reality sets in. She has great calf muscles from the toe-walking but since that Botox there is not muscle definition at all.
Swimming is going great. She is having trouble kicking but that is to be expected. Hopefully, Feldenkrais will help with that too.
I would love to hear your thoughts and as always thank you for your prayers and all!!!
Tuesday, March 23, 2010
Update Time
We met with the pediatric neurologist yesterday afternoon. His recommendation was an achilles release in conjunction with botox injections in the hamstring and achilles calf areas.
We are currently looking for a pediatric orthopedic surgeon, and other opinions on treatments too. We are looking nationally too. I keep going back to the fact that more testing needs to be completed to get us a better insight into her particular situation. Like a gait analysis, nerve or muscle functions, etc. Also, I would like more concentration to be placed on her BRAIN and not the leg so much. Her white matter is still pliable so lets work with that, sorry for the vent!!
Chris and I am head down and knowing that time is of the essence in regard to her contracture. However, we are going to review all areas of treatments and combinations that best fit her. God made us all in His image and with a twist of uniqueness that makes us us, like a snowflake!
More info. to come....
We are currently looking for a pediatric orthopedic surgeon, and other opinions on treatments too. We are looking nationally too. I keep going back to the fact that more testing needs to be completed to get us a better insight into her particular situation. Like a gait analysis, nerve or muscle functions, etc. Also, I would like more concentration to be placed on her BRAIN and not the leg so much. Her white matter is still pliable so lets work with that, sorry for the vent!!
Chris and I am head down and knowing that time is of the essence in regard to her contracture. However, we are going to review all areas of treatments and combinations that best fit her. God made us all in His image and with a twist of uniqueness that makes us us, like a snowflake!
More info. to come....
Thursday, February 18, 2010
Swim with Donna is so much fun! The girls had their 2nd lesson yesterday, a reschedule due to the snow on Friday! They are both doing so well. They went under water yesterday and did not freak or anything. It is amazing how much trust a complete stranger can have over our children, very scary. Good thing we are paying her and I am watching the entire time, huh.
I am still debating on how far to go with the school system and their evaluations. I am struggling with should I take up the time, resources etc. from someone else who needs the help more than Grace. That is what has caused me to pause.
Well, off to pick up my girls!!!
I am still debating on how far to go with the school system and their evaluations. I am struggling with should I take up the time, resources etc. from someone else who needs the help more than Grace. That is what has caused me to pause.
Well, off to pick up my girls!!!
Saturday, February 6, 2010
Updates on Grace
I am so thankful for my children and each and everything that is happening in and around my life, for it is molding me to be the woman, wife, mother that I desire to be. Thank you God for your patient love for us all especially me for the more I see only helps me to be more merciful.
Wow, I haven't updated since December 22nd! I will try to be brief, HA!
Grace had her 4th cast put on Christmas Eve.
All indications from many of us was that she was losing her flexion and getting tight again. The last casting only gave her 2 degrees of flexion. I am not sure if Grace is just a 'tough' girl and does not want to mention the pain or she has some type of sensory issues. She was quiet but having fun all day. Once she went to sleep. She woke up every hour crying and screaming in pain. Motrin, biofreeze, TLC, nothing helped. So at 5 am Christmas morning we took the cast off. Her foot was red and sore and she started to gain relief after more pain reliever and it being off.
We went on the following Wednesday to see the therapist and she had gained on flexion and was actually loosing a bit of it. So we decided to wait and see with the doc. said.
Now Grace is set up to have more Botox (hopefully insurance will approve) on March 3th this time she will more than likely get 4 shots and a bit more in each shot.
Grace had a meltdown about two weeks ago (yes, I let her have some wheat and gluten the day before) over nothing and started to itch her head like crazy. So I started to look at her head to check it out and she was broken out in hives all over her face. This has never happened, good to know!
She starts swimming lessons next Wednesday, the girls are so excited since they will have a semi-private lesson together. This should help Grace with her muscles, too.
Grace is in the process of being evaluated by the school system. We just need more help and more resources that we hope they can assist us with.
Happy New Year!
Wow, I haven't updated since December 22nd! I will try to be brief, HA!
Grace had her 4th cast put on Christmas Eve.
All indications from many of us was that she was losing her flexion and getting tight again. The last casting only gave her 2 degrees of flexion. I am not sure if Grace is just a 'tough' girl and does not want to mention the pain or she has some type of sensory issues. She was quiet but having fun all day. Once she went to sleep. She woke up every hour crying and screaming in pain. Motrin, biofreeze, TLC, nothing helped. So at 5 am Christmas morning we took the cast off. Her foot was red and sore and she started to gain relief after more pain reliever and it being off.
We went on the following Wednesday to see the therapist and she had gained on flexion and was actually loosing a bit of it. So we decided to wait and see with the doc. said.
Now Grace is set up to have more Botox (hopefully insurance will approve) on March 3th this time she will more than likely get 4 shots and a bit more in each shot.
Grace had a meltdown about two weeks ago (yes, I let her have some wheat and gluten the day before) over nothing and started to itch her head like crazy. So I started to look at her head to check it out and she was broken out in hives all over her face. This has never happened, good to know!
She starts swimming lessons next Wednesday, the girls are so excited since they will have a semi-private lesson together. This should help Grace with her muscles, too.
Grace is in the process of being evaluated by the school system. We just need more help and more resources that we hope they can assist us with.
Happy New Year!
Wednesday, February 3, 2010
Please pray for my friend...
My heart aches, hurts for my friend Cameron. I have know her since kindergarten and thankfully we have reconnected this past year.
She is the perfect example of Erma Bombeck's poem 'Ode to Special Mom's. Her son Coby died yesterday, February 2nd, 2010. Coby was born on October 11, 2000. He in the words of his parents is a champion and a true courageous and strong male. His doctors last Thursday gave the news of kidney failure and there was nothing more that they could do. So they took him home to be together.
To read about this incredible boy go to
http://www.babiesonline.com/babies/c/cobyscorner/
Please pray for my friend and her family especially when things slow down and get quiet say in a month and especially over the summer.
She is the perfect example of Erma Bombeck's poem 'Ode to Special Mom's. Her son Coby died yesterday, February 2nd, 2010. Coby was born on October 11, 2000. He in the words of his parents is a champion and a true courageous and strong male. His doctors last Thursday gave the news of kidney failure and there was nothing more that they could do. So they took him home to be together.
To read about this incredible boy go to
http://www.babiesonline.com/babies/c/cobyscorner/
Please pray for my friend and her family especially when things slow down and get quiet say in a month and especially over the summer.
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