Family Update and Reflections

[Guest guest]

It has been quite some time since we updated most of you. Currently, the

entire household is sick. It all started about a month ago when I became sick

which over a months time developed into respiratory illness and severe sinus

infections. Olivia became ill about a week ago with another severe inner ear

infection along with sinusitis and flu like symptoms. She has been to the

doctor

and is under medication and respiratory treatments and is getting better

slowly. Her illness hasnt affected her playfulness and her new found ability to

walk and get into just about everything. A few days later last week JD started

experiencing similar symptoms to his sister. He was placed on oxygen for a

few days and has been weaned off the oxygen but is still experiencing increased

secretions and what we call junkiness in his lungs. He is getting better

slowly also. His respiratory treatments have been increased and we are keeping

close tabs on him and keeping Dr. Gelfand his pulmonologist informed. Sunday

the sickness hit Mandy hard. She experienced fever which was very hard to keep

down for several days and of course sinusitis and some flu like symptoms.

She too is under medication and our family doctors care. We are all making slow

progress getting over these illnesses but are seeming to feel better as the

days pass.

JD has officially started occupational, physical and speech therapy and the

results we have gotten have been surprising. It is felt that JD will be

sitting by himself very shortly. He is almost there. He is doing well with his

therapists with no major issues. They are learning about him and he is learning

how to interact with them for his benefit. Perhaps the most striking changes

with JD have been in regards to his speech therapy. Currently in two sessions

JD is willing to let the therapist touch his lips without getting mad. He

has also let the therapist massage his face, lips and the inside of his mouth

with what looks like a vibrating electric toothbrush. He is also letting the

therapist touch his mouth without problems. The other day JD let us actually

touch a cookie to his mouth without problems. We suspect that the therapist

will be able to get her hands inside his mouth soon to continue therapy. The

therapist wants to do a swallow study to see and judge his ability to swallow

before the introduction of foods and juices are used to help him begin to learn

to eat orally. Currently JD likes to have spray candy flavors rubbed on his

lips, ice cream, chocolate, and some fruit juices. He is showing evidence of

licking his lips when these things are introduced and swallowing these

substances without any apparent aspiration into his lungs. We suspect that JD

will

continue to make remarkable progress toward his goal of eating orally. We

suspect that JD will possibly be eating orally within 8-10 months so that might

mean

that his g-button may be removed within a year. All I can say is wow what a

miracle. Physically, JD is delayed but he can lay on his tummy and initiate

some reaching with his arms and support himself partially with his elbows. The

progress JD has made in just two therapy sessions is remarkable.

We are still unsure because of JD's current health about his upcoming choanal

atresia surgery. We do know that if he is healthy that Dr. Brown his ENT

feels comfortable with opening his nasal septum and Dr. Brown is of the opinion

that there is a 10-15 percent chance that he will have to do this type of

surgery a second time. JD has membranous choanal atresia which is quite

different

then Mandy's bony choanal atresia which required numerous surgeries over her

lifetime. What we do know is once Dr. Brown gets the opportunity to go in

safely and open up his nasal septum to allow him to breath via the nose that

this

will only help JD get off the vent for good. Please remember to keep him and

Dr. Brown in your prayers as we approach this possible surgery. Dr. Brown

feels good about the outcome and about what he will have to do to get JD an

adequate airway which will lead to the eventual decannulation of JD (removal of

the trach) We suspect if things go well that JD will be decannulated surgically

next spring.

As you can see even though things have been sticky around the house with

illness that JD is making some slow progress in his own " baby steps. " We are

just

in awe about the miracle that is taking place in our lives and as well as the

lives of our children. There is no doubt that this is all due to the work of

our God who loves us unconditionally. Keep praying and Keep believing. We

truly are feeling the prayers and thoughts of people all over this nation in

regards to the medical situation that we face daily with our children. We feel

as we are being uplifted closer and closer to our God who is providing a

miracle. Our only choice through this whole situation has been to surrender and

submit to the will of God and He through his power has taken care of us and our

children. Miracles do happen and dreams do come true.

We will update you more when we know more.

In His Loving Hands and still holding onto that rope,

, Mandy, Olivia (18 months) and (cHArgEd 18 months)

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

These kiddos sure are amazing! Evan has made some incredible progress the past

few months as well. It takes patience, because the progress happens at its own

pace (slower than I would like!)--but it does happen. Thanks for the great

email.

Hugs,

, , and Evan Storrs (20 months, ChaRGE)

erin32573@... wrote:

It has been quite some time since we updated most of you. Currently,

the

entire household is sick. It all started about a month ago when I became sick

which over a months time developed into respiratory illness and severe sinus

infections. Olivia became ill about a week ago with another severe inner ear

infection along with sinusitis and flu like symptoms. She has been to the doctor

and is under medication and respiratory treatments and is getting better

slowly. Her illness hasnt affected her playfulness and her new found ability to

walk and get into just about everything. A few days later last week JD started

experiencing similar symptoms to his sister. He was placed on oxygen for a

few days and has been weaned off the oxygen but is still experiencing increased

secretions and what we call junkiness in his lungs. He is getting better

slowly also. His respiratory treatments have been increased and we are keeping

close tabs on him and keeping Dr. Gelfand his pulmonologist informed. Sunday

the sickness hit Mandy hard. She experienced fever which was very hard to keep

down for several days and of course sinusitis and some flu like symptoms.

She too is under medication and our family doctors care. We are all making slow

progress getting over these illnesses but are seeming to feel better as the

days pass.

JD has officially started occupational, physical and speech therapy and the

results we have gotten have been surprising. It is felt that JD will be

sitting by himself very shortly. He is almost there. He is doing well with his

therapists with no major issues. They are learning about him and he is learning

how to interact with them for his benefit. Perhaps the most striking changes

with JD have been in regards to his speech therapy. Currently in two sessions

JD is willing to let the therapist touch his lips without getting mad. He

has also let the therapist massage his face, lips and the inside of his mouth

with what looks like a vibrating electric toothbrush. He is also letting the

therapist touch his mouth without problems. The other day JD let us actually

touch a cookie to his mouth without problems. We suspect that the therapist

will be able to get her hands inside his mouth soon to continue therapy. The

therapist wants to do a swallow study to see and judge his ability to swallow

before the introduction of foods and juices are used to help him begin to learn

to eat orally. Currently JD likes to have spray candy flavors rubbed on his

lips, ice cream, chocolate, and some fruit juices. He is showing evidence of

licking his lips when these things are introduced and swallowing these

substances without any apparent aspiration into his lungs. We suspect that JD

will

continue to make remarkable progress toward his goal of eating orally. We

suspect that JD will possibly be eating orally within 8-10 months so that might

mean

that his g-button may be removed within a year. All I can say is wow what a

miracle. Physically, JD is delayed but he can lay on his tummy and initiate

some reaching with his arms and support himself partially with his elbows. The

progress JD has made in just two therapy sessions is remarkable.

We are still unsure because of JD's current health about his upcoming choanal

atresia surgery. We do know that if he is healthy that Dr. Brown his ENT

feels comfortable with opening his nasal septum and Dr. Brown is of the opinion

that there is a 10-15 percent chance that he will have to do this type of

surgery a second time. JD has membranous choanal atresia which is quite

different

then Mandy's bony choanal atresia which required numerous surgeries over her

lifetime. What we do know is once Dr. Brown gets the opportunity to go in

safely and open up his nasal septum to allow him to breath via the nose that

this

will only help JD get off the vent for good. Please remember to keep him and

Dr. Brown in your prayers as we approach this possible surgery. Dr. Brown

feels good about the outcome and about what he will have to do to get JD an

adequate airway which will lead to the eventual decannulation of JD (removal of

the trach) We suspect if things go well that JD will be decannulated surgically

next spring.

As you can see even though things have been sticky around the house with

illness that JD is making some slow progress in his own " baby steps. " We are

just

in awe about the miracle that is taking place in our lives and as well as the

lives of our children. There is no doubt that this is all due to the work of

our God who loves us unconditionally. Keep praying and Keep believing. We

truly are feeling the prayers and thoughts of people all over this nation in

regards to the medical situation that we face daily with our children. We feel

as we are being uplifted closer and closer to our God who is providing a

miracle. Our only choice through this whole situation has been to surrender and

submit to the will of God and He through his power has taken care of us and our

children. Miracles do happen and dreams do come true.

We will update you more when we know more.

In His Loving Hands and still holding onto that rope,

, Mandy, Olivia (18 months) and (cHArgEd 18 months)

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Dear and Mandy-

What a wonderful update on all the goings on of your lovely Olivia and JD. I am

so sorry that your whole household is sick - and as I have been delayed

replying, I am hopeful that you are all better - or at least well on the mend -

as you read this. So much exciting news for JD! For us, the gift of this

challenge is no gain is taken for granted - the miracle in each moment is clear.

You and your family are always in thought, heart and prayer. We hope and wish

for the best in everything - every moment, every day, every outcome, and every

procedure.

Take good care, and thank you for sharing your life so beautifully.

best~

Yuka

Family Update and Reflections

It has been quite some time since we updated most of you. Currently, the

entire household is sick. It all started about a month ago when I became sick

which over a months time developed into respiratory illness and severe sinus

infections. Olivia became ill about a week ago with another severe inner ear

infection along with sinusitis and flu like symptoms. She has been to the

doctor

and is under medication and respiratory treatments and is getting better

slowly. Her illness hasnt affected her playfulness and her new found ability

to

walk and get into just about everything. A few days later last week JD started

experiencing similar symptoms to his sister. He was placed on oxygen for a

few days and has been weaned off the oxygen but is still experiencing

increased

secretions and what we call junkiness in his lungs. He is getting better

slowly also. His respiratory treatments have been increased and we are keeping

close tabs on him and keeping Dr. Gelfand his pulmonologist informed. Sunday

the sickness hit Mandy hard. She experienced fever which was very hard to keep

down for several days and of course sinusitis and some flu like symptoms.

She too is under medication and our family doctors care. We are all making

slow

progress getting over these illnesses but are seeming to feel better as the

days pass.

JD has officially started occupational, physical and speech therapy and the

results we have gotten have been surprising. It is felt that JD will be

sitting by himself very shortly. He is almost there. He is doing well with his

therapists with no major issues. They are learning about him and he is

learning

how to interact with them for his benefit. Perhaps the most striking changes

with JD have been in regards to his speech therapy. Currently in two sessions

JD is willing to let the therapist touch his lips without getting mad. He

has also let the therapist massage his face, lips and the inside of his mouth

with what looks like a vibrating electric toothbrush. He is also letting the

therapist touch his mouth without problems. The other day JD let us actually

touch a cookie to his mouth without problems. We suspect that the therapist

will be able to get her hands inside his mouth soon to continue therapy. The

therapist wants to do a swallow study to see and judge his ability to swallow

before the introduction of foods and juices are used to help him begin to

learn

to eat orally. Currently JD likes to have spray candy flavors rubbed on his

lips, ice cream, chocolate, and some fruit juices. He is showing evidence of

licking his lips when these things are introduced and swallowing these

substances without any apparent aspiration into his lungs. We suspect that JD

will

continue to make remarkable progress toward his goal of eating orally. We

suspect that JD will possibly be eating orally within 8-10 months so that

might mean

that his g-button may be removed within a year. All I can say is wow what a

miracle. Physically, JD is delayed but he can lay on his tummy and initiate

some reaching with his arms and support himself partially with his elbows. The

progress JD has made in just two therapy sessions is remarkable.

We are still unsure because of JD's current health about his upcoming choanal

atresia surgery. We do know that if he is healthy that Dr. Brown his ENT

feels comfortable with opening his nasal septum and Dr. Brown is of the

opinion

that there is a 10-15 percent chance that he will have to do this type of

surgery a second time. JD has membranous choanal atresia which is quite

different

then Mandy's bony choanal atresia which required numerous surgeries over her

lifetime. What we do know is once Dr. Brown gets the opportunity to go in

safely and open up his nasal septum to allow him to breath via the nose that

this

will only help JD get off the vent for good. Please remember to keep him and

Dr. Brown in your prayers as we approach this possible surgery. Dr. Brown

feels good about the outcome and about what he will have to do to get JD an

adequate airway which will lead to the eventual decannulation of JD (removal

of

the trach) We suspect if things go well that JD will be decannulated

surgically

next spring.

As you can see even though things have been sticky around the house with

illness that JD is making some slow progress in his own " baby steps. " We are

just

in awe about the miracle that is taking place in our lives and as well as the

lives of our children. There is no doubt that this is all due to the work of

our God who loves us unconditionally. Keep praying and Keep believing. We

truly are feeling the prayers and thoughts of people all over this nation in

regards to the medical situation that we face daily with our children. We feel

as we are being uplifted closer and closer to our God who is providing a

miracle. Our only choice through this whole situation has been to surrender

and

submit to the will of God and He through his power has taken care of us and

our

children. Miracles do happen and dreams do come true.

We will update you more when we know more.

In His Loving Hands and still holding onto that rope,

, Mandy, Olivia (18 months) and (cHArgEd 18 months)

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.