September 2007, Month 3 at Home
September 26 - Good News for Amy & Rees
On Tuesday Mark, Amy and Amy’s dad spent the entire day at MD Anderson for our first
visit with the world expert on CML. Initial thoughts: It felt terrible walking into a place
you never wanted to have to go to, but grateful it is right down the street. Current
thoughts: What an amazing place! The staff of caring people and the lives they save
through treatment and research is remarkable.
It was a long day of paperwork and poking with needles. The test results should come
in a few weeks. We had a tour guide that took us to all of the different labs, exam
rooms and cafeteria. Then we saw the doc. He is very pleased with my progress and
lowered my dose of Gleevec! I can now space out the dose through out the day, which
he expects to alleviate my side effects. He thinks my 100% remission that we
celebrated in April was a false result, but expects that I will soon get a true remission
result. He was very positive. When I asked about long-term, he said I should be glad I
have something that he can fix like CML, instead of a disease that he can’t cure and is
hard to manage and like diabetes.
We went in with a long list of questions, but he did such a wonderful job explaining
everything that we only asked, “Are you sure?” We are so excited with the report! I can’
t explain the relief I feel to know that I can plan on spending many years to come with
Rees and Mark, my two angels.
On the Rees front: He got his new hearing aid molds on Monday and the aids are now
working much better. Today was our second speech therapy session and it brought us
to tears. Rees was responding to our voices AND tracking the movement of toys with
his eyes and ears. This is the first time we were confident without a doubt that he was
tracking. We are so thrilled! Our speech and hearing therapy is also seeing therapy.
We also got word from our insurance that Rees will continue his nursing coverage until
the end of the year. We are excited and shocked. We assumed that they would cut
back on our hours, but they want to continue to ensure that Rees will continue with his
amazing progress and successfully reach the goal of decannulation (closing the trach)
in the spring.
Rees also had an evaluation for occupational therapy today. The therapist was amazed
when she meet Rees, not expecting such an active boy after reading his hospital
discharge summary.
We have had such a wonderful week. We hope the positive news continues through
Friday when Rees gets his blood gas to check his CO2 level without the vent.
September 23 - Rees is Off the Vent!!!
This is the day that the Lord has made.
Let us REJOICE and be glad.
At 2:48 p.m. on Saturday, September, 22. Rees began breathing all on his own. We got
word to remove his ventilator and he hasn’t missed a beat. Words can’t describe how
grateful for this remarkable milestone.
Our house is now quiet and peaceful without the constant droning of the machines. We
can pick Rees up and hug him closely with no plastic tubes in the way. We don’t have to
untangle “the spaghetti,” the nickname for his hoses, tubes and wires that got jumbled
and twisted together making it more likely for the NJ tube to get pulled. Rees is much
more mobile now with just his compact feeding pump and pulse oximeter. Right now he
has 24/7 of the pulse ox, but Tuesday we can go back to hourly spot checks and only
wearing it full time at night. That will leave only one tube left of the 7 we came home
with.
This morning Rees and mom woke up early, so we all went on a walk. No loading up the
stroller with the heavy equipment. Dad carried his pulse ox and feeding pump in a
backpack, the suction machine in its bag, and a big boy in his sunglasses.
Rejoice.
Rejoice.
Rejoice.
Our last major task now for Rees’ lungs is to keep them clear of infection during the
upcoming cold/flu/RSV season. If he is exposed and catches anything it will be a major
setback.
A small filter now covers Rees’ trach. Yes, he is already pulling it off and putting it in his
mouth. We asked the nurses how they’ve kept their other patients from doing this and
they had no answers…they’ve never had a baby trach patient so active and able enough
to pull it off. Seeing how amazed our experienced home nurses are in Rees’ progress
makes us smile in astonishment at our little angel. We are so proud of him. I am proud
of dad too—he quickly fashioned a holder to keep Rees from pulling of the filter.
At the end of the week we get a blood gas to make sure Rees’ CO2 level is at the right
place off the vent.
Mom is still in shock that the doctor called and told us we could take off the vent at
home. The last time we tried this in the NICU we had a huge team of doctors, nurses
and respirator therapists on hand.
Rees’ cousins Toby and Renee and Aunt Lynn and Uncle Tim came to see him today. His
Uncle Steven came on Friday. Everyone is getting their visits in before cold season.
September 20 - 3 months at Home - Busy Day
Today was a marathon day of appointments. We left home at 10 a.m. and returned at 6
p.m. Rees ran into lots of friends at the TCH cafeteria—including his best buddy Dr.
Bloss and Dr. Minkes, Rees’ surgeons. (We saw Dr. Kim last week too.) These
surgeons are our heroes with the hands of God. They were so happy and proud to see
their little miracle doing so well. Rees was the only kid in the cafeteria who disrobed for
an on-the-spot hernia inspection. We promise to get it fixed before such a thing
embarrasses him.
First we saw his eye surgeon. Rees had his eyes dilated and examined. The only thing
we do know is Rees sees something. He could have vision problems, but we won’t
know for some time. There are possible problems that could be related to his
neurological issues (PVL) and of course his prematurity. If it is neurologically related
though, there is no correction. At some point we will have an MRI to possibly give some
clues. We go back in 6 months for an eye exam. We will be praying hard that if Rees
does have vision problems it is something that can be corrected.
Then we saw pulmonary. His doctor asked how things were going with the equipment
company, because it has been an ongoing nightmare dealing with them and getting
Rees what he needs. I said it is still a nightmare. He replied “well then, let’s get rid of
the equipment.” I screamed. The pulmonologist needs to check with his other
specialists for the go ahead, but we could get the call any day to remove the vent. Mom
is a little nervous that the big event will happen at home instead of at the doctor’s office.
Dad claims he is not nervous and has full confidence in Reesy.
Next we saw GI. Good news is that Rees’ spleen now is normal size. His liver is still a
bit big, but now is soft, which is a huge improvement. Rees isn’t growing as much as
they would like so they upped the concentration of his formula to give him more
calories. He is now 24.5 inches and 14 pounds, 1 ounce. Because of Rees’ trach, we
have to move very conservatively with his feedings, so we are sticking with the NJ tube,
which has now been in about 6 weeks.. We can still try an NG tube if this NJ tube comes
out, but it would really be best for it to happen a few weeks after Rees has been off the
vent.
All three of the Potts crew were exhausted when we got home. Of course that didn’t
stop Rees from pulling away from us during trach care and pulling out his trach tube.
This time mom and dad handled it like pros, calmly and quickly putting in the new tube.
It was almost as fast as a planned tube change.
Thank you Susanne for dinner! We really needed it.
September 18 - Helmet Superstar
Rees went for a helmet fitting today. This is the first time they have measured his head
since he started wearing the helmet about 6 weeks ago. The therapist re-measured
and recalculated the results several times in disbelief. He said he’s never seen such
“phenomenal” results so quickly.
In one of the ratios used to track the size and shape of the skull 80 is optimal, and for
boys the normal range goes up to 91. Best case, a correction of 10 is expected over the
coarse of wearing the helmet. Rees started out at 104, so they were hoping to get him
to 94. Today he measured 88! We got the helmet at the exact perfect time to coincide
with a major growth spurt.
The helmet was adjusted today to make a little more room for his hearing aids. But we
have gotten to the point that if we need to discontinue the helmet to help the aids do
better, we could. We are going to shoot for wearing the helmet a month or two more to
get the full benefit.
Every day Rees is starting to show more and more of his personality. We think his aids
are amplifying this. We are also noticing that his eyes that constantly moved back and
forth are starting to focus and stay fixed on something for several minutes---we love it
when it is our eyes. Although Rees doesn’t cry much, he is starting to make big tears.
This is much harder on mom, dad and his nurses.
Thursday is a very busy day. We will be at TCH most of the day for lab work and 3
doctors appointments (eyes, GI and pulmonary).
We hope cousin Anna is feeling better. She is a very tough girl, like her cousin Rees and
her dad, so we know her broken wrist will heal quickly.
September 17 - Rees' First Day of School
Rees received a very good report from his neurologist today. The big risk of his PVL, the
spot in his brain that did not completely develop when he was so tiny and sick, is
cerebral palsy. CP can have very minor effects to very major effects. The doc said he
saw no signs of weak muscle tone, which is an indicator for cerebral palsy. Alleluia!
Rees’ head size is also much closer to the normal curve than ever before. It is
wonderful news that he is trending in the right direction. Although not “out of the
woods” neurologically and we won’t know all of the answers for several years to come,
mom and dad are very excited in Rees’ progress.
Today was Rees’ first day of school. His speech therapist came to our house for his
first class. Today mom and dad were the primary students. We learned several
techniques to use with Rees that are the most advantageous for exposing Rees to the
world of sound.
Although Rees does not want a minute to pass without his pacifier, he now throws it
across the room. He is now liking to spend time in his exer-saucer and thinks it is very
cool to stand on his legs. Mom and dad think he is super cool too.
September 14 - Let the Hearing Begin
We spent the morning at TCH and Mark called to see if we could meet him at 2 today.
He didn’t have to finish. I started crying. Yippee. Rees’ hearing aids were in.
We rushed over to the Center for Hearing and Speech. They received the earpieces for
Rees’ hearing aids. They are molds that have to fit perfectly for the hearing aid to work.
His actual hearing aids won’t be in for several weeks, but CHS has a loaner pair so Rees
can start hearing as soon as possible—how fabulous.
As soon as Rees put on “the aids” (what the “in” people call them), his eyes lit up. It
was perfect.
It will take a while for Rees to begin to distinguish the different types of sounds he is
hearing, but we hope since he did have hearing months ago, his process might not take
so long. We did have trouble with feedback. It is a very high frequency that he probably
doesn’t pick up, but if we hear it, the aids aren’t working. We tried different positions,
with the helmet, without the helmet, holding him totally still, but nothing seemed to help.
Mom thought she was going to have to get earplugs if Rees was going to wear his aids.
Finally the audiologist made a new mold of Rees ear. We were all amazed when we
compared it to the earpieces—Rees grew a tremendous amount in two weeks that he
already outgrew his earpieces. Of course we were very proud. A new pair of earpieces
should come in next week. This will be an ongoing cycle for several months as he is
growing, growing, growing.
We had fun playing music and singing to Rees on the way home. We have so much to
tell him. Rees has his first session with his speech therapist on Monday.
Now back to the morning at TCH. Rees had an echocardiogram, EKG and x-ray to check
on his heart and the pesky blood clot in his right atrium. The cardiologist had very good
news following the tests. The term for Rees’ clot is a “cast.” It was formed in one of his
central lines. The cast is still in the exact same spot as it was 3 months ago. At this
point it is considered stable and is probably imbedded in the wall and will hopefully stay
put. Most likely it is shriveled up and the only time it could cause problems is if he has
an infection. She said it is like a scar, but they will continue to watch it. We will repeat
the echo in 6 months. As far as his heart goes, it is perfectly healthy and normal.
Praise the Lord.
Rees is exhausted from his busy day. Mom and dad are glowing with the happy news
and events of the day.
September 13 - Mr. Peep of 3 is doing great
Rees is doing fabulous on his new vent settings. He has been “sating” beautifully.
Yesterday was Rees' last dose of Reglan, one of two reflux meds Rees has been taking.
We have been weaning his dose for several weeks. We have learned that you have to
slowly sneak things away so he won't notice. It worked. Rees' belly must be getting
better, so far no spits ups.
On Friday we go for an echocardiogram to check on the tiny blood clot in Rees’ right
atrium. We were hoping to have his hearing aids this week, but they have not arrived.
We hope all of our friends and family in the Golden Triangle are doing ok after the storm
and will have electricity soon! Happy belated birthday Uncle Brit and cousin Ben.
Wow! lonestarpotts has over 30 thousand hits. We are so touched that so many people
are keeping up with our sweet Reesy. We consider each hit a prayer for Rees'
continued healing.
September 11 - Big Day: Peep 3
Last Thursday, Rees had his flu shot and had his helmet fitted. We are so thrilled with
the magic the helmet has done is such a short time. Rees’ doctor told us how proud
she was of Rees, mom, dad and his nurses for keeping Rees healthy and thriving at
home.
Rees is always covered when he is out of the house so he avoids any contact with
germs. Mom should have done the same. I got a horrible stomach virus that hit in the
middle of the night on Friday. I was quarantined to my bedroom and bathroom. I could
only see Rees on our closed circuit tv. Ya Ya came to help Dad since we didn’t have
round-the-clock nurses for the weekend. When I finally got to see Rees on Monday
afternoon, he looked like he had grown a pound. Babies do change every day.
Wednesday is a big day for Rees. We are turning his vent settings down to peep of 3.
This is the natural peep level of the body, meaning if he handles this setting, he may
not need the vent for much longer. Please take a big breath for Rees and say a big
prayer that his lungs are ready. He is definitely giving us the signal that he thinks he is
ready—constantly pulling off the vent tubing from his trach and waving it in the air.
What a fun game.
We are anxiously awaiting the call that Rees’ hearing aids are ready. We are hoping it
will be this week.
September 4 - Rees' New School
This morning we called the Center for Hearing and Speech. They have remarkable
programs for children with hearing lost. We are familiar with CHS from our close friend
Renee who is the director. They wanted to get Rees on the fast track to hearing so they
met with us today so we could do the paperwork to enroll Rees in his first school. As
soon as his hearing aids arrive, probably next week, Rees will start speech therapy. For
about one year Rees will have intensive individual sessions, then he will move to more
of a school setting. They also have a preschool to get gets ready for elementary school.
We are amazed how fast everyone is working to help Rees hear as quickly as possible.
The Center for Hearing and Speech is another tremendous resource that is right in our
backyard in Houston.
Rees is continuing to make huge strides in mobility. He is rolling, rolling, rolling---until
his feeding tube is wrapped around his neck and vent tubes are like spaghetti. He is
crawling better and better and starting to figure out to incorporate his arms. He does
only go in one direction: away from the vent.
September 3 - Let the Weaning Begin
This morning Dad turned down my ventilator settings from cpap/peep 7 to 5. I have had
a great day with no problems, “sating” 100. We are praying hard that Rees has no
problems weaning off the vent this month, so he will be free off the tubes to his trach in
early October.
Today is my great grandmother LuLu’s birthday. Yesterday she surprised me and mom
with a visit. It was great to see her, and Aunt Lynn too.
Today Gi Gi had to go back to Indiana. We had a fun visit. Rees has to wait until RSV
season is over for her to come back. That is a really long time.
September 2 - Rees' Next Hurdle
On Friday, we spent 6 hours at TCH in the audiology department for Rees’ hearing test.
Rees had a grand time playing in the big crib with flat mattress. Rolling. Laughing.
Rolling. Even after he had two doses of sedatives. So mom held him and he slept
through the procedures. The results were that Rees has moderate to severe
sensorineural hearing loss in both ears, which means he cannot hear voices. That night
they made molds of his ears for tiny hearing aids. With hearing aids he should have no
problems hearing. (The cochlear implants are for those with profound hearing loss—
Rees is not near that range.)
Mark and I were of course disappointed with the news. Rees has faced so many
challenges and, although we knew hearing loss was a risk from the start, we were
hoping he wouldn’t have to deal with this hurdle. We are so very very thankful that he
does not have total hearing loss and that there is wonderful technology to help him, and
that it was diagnosed early.
The audiologist repeatedly apologizing for having to give us “horrible” news. This made
Mark and I laugh. I’m sure the majority of the people she delivers this news to do think
of it as “horrible.” We told her news is not considered horrible if is does not come with
survival statistics—we know this from lots of experience.
Rees has always been at high risk for hearing damage: prematurity, ventilator,
infections, harsh antibiotics, but the one risk we weren’t aware of, until we started
reading through some of the mounds of information packets we were given, was
hyperbilirubinemia (jaudice) which Rees had so severely from the TPN (iv nutrition).
What a tough, precious angel. We can’t wait for Rees to get his hearing aids so he can
hear us tell him how much we love him.
Other news from the week…Rees had his helmet fitted on Monday. Thursday was
Rees’ 10 month birthday. We survived the thunderstorms this week with only a one-
minute power outage. We did very well getting Rees’s ventilator hooked up to the back-
up battery in the dark. Happy birthday to cousin Fi on Friday. Gi Gi came in from Indiana
on Friday. Rees is a long, lean wiggle machine compared to her last visit. She can really
see a difference in his head shape from the helmet.
September 26 - Good News for Amy & Rees
On Tuesday Mark, Amy and Amy’s dad spent the entire day at MD Anderson for our first
visit with the world expert on CML. Initial thoughts: It felt terrible walking into a place
you never wanted to have to go to, but grateful it is right down the street. Current
thoughts: What an amazing place! The staff of caring people and the lives they save
through treatment and research is remarkable.
It was a long day of paperwork and poking with needles. The test results should come
in a few weeks. We had a tour guide that took us to all of the different labs, exam
rooms and cafeteria. Then we saw the doc. He is very pleased with my progress and
lowered my dose of Gleevec! I can now space out the dose through out the day, which
he expects to alleviate my side effects. He thinks my 100% remission that we
celebrated in April was a false result, but expects that I will soon get a true remission
result. He was very positive. When I asked about long-term, he said I should be glad I
have something that he can fix like CML, instead of a disease that he can’t cure and is
hard to manage and like diabetes.
We went in with a long list of questions, but he did such a wonderful job explaining
everything that we only asked, “Are you sure?” We are so excited with the report! I can’
t explain the relief I feel to know that I can plan on spending many years to come with
Rees and Mark, my two angels.
On the Rees front: He got his new hearing aid molds on Monday and the aids are now
working much better. Today was our second speech therapy session and it brought us
to tears. Rees was responding to our voices AND tracking the movement of toys with
his eyes and ears. This is the first time we were confident without a doubt that he was
tracking. We are so thrilled! Our speech and hearing therapy is also seeing therapy.
We also got word from our insurance that Rees will continue his nursing coverage until
the end of the year. We are excited and shocked. We assumed that they would cut
back on our hours, but they want to continue to ensure that Rees will continue with his
amazing progress and successfully reach the goal of decannulation (closing the trach)
in the spring.
Rees also had an evaluation for occupational therapy today. The therapist was amazed
when she meet Rees, not expecting such an active boy after reading his hospital
discharge summary.
We have had such a wonderful week. We hope the positive news continues through
Friday when Rees gets his blood gas to check his CO2 level without the vent.
September 23 - Rees is Off the Vent!!!
This is the day that the Lord has made.
Let us REJOICE and be glad.
At 2:48 p.m. on Saturday, September, 22. Rees began breathing all on his own. We got
word to remove his ventilator and he hasn’t missed a beat. Words can’t describe how
grateful for this remarkable milestone.
Our house is now quiet and peaceful without the constant droning of the machines. We
can pick Rees up and hug him closely with no plastic tubes in the way. We don’t have to
untangle “the spaghetti,” the nickname for his hoses, tubes and wires that got jumbled
and twisted together making it more likely for the NJ tube to get pulled. Rees is much
more mobile now with just his compact feeding pump and pulse oximeter. Right now he
has 24/7 of the pulse ox, but Tuesday we can go back to hourly spot checks and only
wearing it full time at night. That will leave only one tube left of the 7 we came home
with.
This morning Rees and mom woke up early, so we all went on a walk. No loading up the
stroller with the heavy equipment. Dad carried his pulse ox and feeding pump in a
backpack, the suction machine in its bag, and a big boy in his sunglasses.
Rejoice.
Rejoice.
Rejoice.
Our last major task now for Rees’ lungs is to keep them clear of infection during the
upcoming cold/flu/RSV season. If he is exposed and catches anything it will be a major
setback.
A small filter now covers Rees’ trach. Yes, he is already pulling it off and putting it in his
mouth. We asked the nurses how they’ve kept their other patients from doing this and
they had no answers…they’ve never had a baby trach patient so active and able enough
to pull it off. Seeing how amazed our experienced home nurses are in Rees’ progress
makes us smile in astonishment at our little angel. We are so proud of him. I am proud
of dad too—he quickly fashioned a holder to keep Rees from pulling of the filter.
At the end of the week we get a blood gas to make sure Rees’ CO2 level is at the right
place off the vent.
Mom is still in shock that the doctor called and told us we could take off the vent at
home. The last time we tried this in the NICU we had a huge team of doctors, nurses
and respirator therapists on hand.
Rees’ cousins Toby and Renee and Aunt Lynn and Uncle Tim came to see him today. His
Uncle Steven came on Friday. Everyone is getting their visits in before cold season.
September 20 - 3 months at Home - Busy Day
Today was a marathon day of appointments. We left home at 10 a.m. and returned at 6
p.m. Rees ran into lots of friends at the TCH cafeteria—including his best buddy Dr.
Bloss and Dr. Minkes, Rees’ surgeons. (We saw Dr. Kim last week too.) These
surgeons are our heroes with the hands of God. They were so happy and proud to see
their little miracle doing so well. Rees was the only kid in the cafeteria who disrobed for
an on-the-spot hernia inspection. We promise to get it fixed before such a thing
embarrasses him.
First we saw his eye surgeon. Rees had his eyes dilated and examined. The only thing
we do know is Rees sees something. He could have vision problems, but we won’t
know for some time. There are possible problems that could be related to his
neurological issues (PVL) and of course his prematurity. If it is neurologically related
though, there is no correction. At some point we will have an MRI to possibly give some
clues. We go back in 6 months for an eye exam. We will be praying hard that if Rees
does have vision problems it is something that can be corrected.
Then we saw pulmonary. His doctor asked how things were going with the equipment
company, because it has been an ongoing nightmare dealing with them and getting
Rees what he needs. I said it is still a nightmare. He replied “well then, let’s get rid of
the equipment.” I screamed. The pulmonologist needs to check with his other
specialists for the go ahead, but we could get the call any day to remove the vent. Mom
is a little nervous that the big event will happen at home instead of at the doctor’s office.
Dad claims he is not nervous and has full confidence in Reesy.
Next we saw GI. Good news is that Rees’ spleen now is normal size. His liver is still a
bit big, but now is soft, which is a huge improvement. Rees isn’t growing as much as
they would like so they upped the concentration of his formula to give him more
calories. He is now 24.5 inches and 14 pounds, 1 ounce. Because of Rees’ trach, we
have to move very conservatively with his feedings, so we are sticking with the NJ tube,
which has now been in about 6 weeks.. We can still try an NG tube if this NJ tube comes
out, but it would really be best for it to happen a few weeks after Rees has been off the
vent.
All three of the Potts crew were exhausted when we got home. Of course that didn’t
stop Rees from pulling away from us during trach care and pulling out his trach tube.
This time mom and dad handled it like pros, calmly and quickly putting in the new tube.
It was almost as fast as a planned tube change.
Thank you Susanne for dinner! We really needed it.
September 18 - Helmet Superstar
Rees went for a helmet fitting today. This is the first time they have measured his head
since he started wearing the helmet about 6 weeks ago. The therapist re-measured
and recalculated the results several times in disbelief. He said he’s never seen such
“phenomenal” results so quickly.
In one of the ratios used to track the size and shape of the skull 80 is optimal, and for
boys the normal range goes up to 91. Best case, a correction of 10 is expected over the
coarse of wearing the helmet. Rees started out at 104, so they were hoping to get him
to 94. Today he measured 88! We got the helmet at the exact perfect time to coincide
with a major growth spurt.
The helmet was adjusted today to make a little more room for his hearing aids. But we
have gotten to the point that if we need to discontinue the helmet to help the aids do
better, we could. We are going to shoot for wearing the helmet a month or two more to
get the full benefit.
Every day Rees is starting to show more and more of his personality. We think his aids
are amplifying this. We are also noticing that his eyes that constantly moved back and
forth are starting to focus and stay fixed on something for several minutes---we love it
when it is our eyes. Although Rees doesn’t cry much, he is starting to make big tears.
This is much harder on mom, dad and his nurses.
Thursday is a very busy day. We will be at TCH most of the day for lab work and 3
doctors appointments (eyes, GI and pulmonary).
We hope cousin Anna is feeling better. She is a very tough girl, like her cousin Rees and
her dad, so we know her broken wrist will heal quickly.
September 17 - Rees' First Day of School
Rees received a very good report from his neurologist today. The big risk of his PVL, the
spot in his brain that did not completely develop when he was so tiny and sick, is
cerebral palsy. CP can have very minor effects to very major effects. The doc said he
saw no signs of weak muscle tone, which is an indicator for cerebral palsy. Alleluia!
Rees’ head size is also much closer to the normal curve than ever before. It is
wonderful news that he is trending in the right direction. Although not “out of the
woods” neurologically and we won’t know all of the answers for several years to come,
mom and dad are very excited in Rees’ progress.
Today was Rees’ first day of school. His speech therapist came to our house for his
first class. Today mom and dad were the primary students. We learned several
techniques to use with Rees that are the most advantageous for exposing Rees to the
world of sound.
Although Rees does not want a minute to pass without his pacifier, he now throws it
across the room. He is now liking to spend time in his exer-saucer and thinks it is very
cool to stand on his legs. Mom and dad think he is super cool too.
September 14 - Let the Hearing Begin
We spent the morning at TCH and Mark called to see if we could meet him at 2 today.
He didn’t have to finish. I started crying. Yippee. Rees’ hearing aids were in.
We rushed over to the Center for Hearing and Speech. They received the earpieces for
Rees’ hearing aids. They are molds that have to fit perfectly for the hearing aid to work.
His actual hearing aids won’t be in for several weeks, but CHS has a loaner pair so Rees
can start hearing as soon as possible—how fabulous.
As soon as Rees put on “the aids” (what the “in” people call them), his eyes lit up. It
was perfect.
It will take a while for Rees to begin to distinguish the different types of sounds he is
hearing, but we hope since he did have hearing months ago, his process might not take
so long. We did have trouble with feedback. It is a very high frequency that he probably
doesn’t pick up, but if we hear it, the aids aren’t working. We tried different positions,
with the helmet, without the helmet, holding him totally still, but nothing seemed to help.
Mom thought she was going to have to get earplugs if Rees was going to wear his aids.
Finally the audiologist made a new mold of Rees ear. We were all amazed when we
compared it to the earpieces—Rees grew a tremendous amount in two weeks that he
already outgrew his earpieces. Of course we were very proud. A new pair of earpieces
should come in next week. This will be an ongoing cycle for several months as he is
growing, growing, growing.
We had fun playing music and singing to Rees on the way home. We have so much to
tell him. Rees has his first session with his speech therapist on Monday.
Now back to the morning at TCH. Rees had an echocardiogram, EKG and x-ray to check
on his heart and the pesky blood clot in his right atrium. The cardiologist had very good
news following the tests. The term for Rees’ clot is a “cast.” It was formed in one of his
central lines. The cast is still in the exact same spot as it was 3 months ago. At this
point it is considered stable and is probably imbedded in the wall and will hopefully stay
put. Most likely it is shriveled up and the only time it could cause problems is if he has
an infection. She said it is like a scar, but they will continue to watch it. We will repeat
the echo in 6 months. As far as his heart goes, it is perfectly healthy and normal.
Praise the Lord.
Rees is exhausted from his busy day. Mom and dad are glowing with the happy news
and events of the day.
September 13 - Mr. Peep of 3 is doing great
Rees is doing fabulous on his new vent settings. He has been “sating” beautifully.
Yesterday was Rees' last dose of Reglan, one of two reflux meds Rees has been taking.
We have been weaning his dose for several weeks. We have learned that you have to
slowly sneak things away so he won't notice. It worked. Rees' belly must be getting
better, so far no spits ups.
On Friday we go for an echocardiogram to check on the tiny blood clot in Rees’ right
atrium. We were hoping to have his hearing aids this week, but they have not arrived.
We hope all of our friends and family in the Golden Triangle are doing ok after the storm
and will have electricity soon! Happy belated birthday Uncle Brit and cousin Ben.
Wow! lonestarpotts has over 30 thousand hits. We are so touched that so many people
are keeping up with our sweet Reesy. We consider each hit a prayer for Rees'
continued healing.
September 11 - Big Day: Peep 3
Last Thursday, Rees had his flu shot and had his helmet fitted. We are so thrilled with
the magic the helmet has done is such a short time. Rees’ doctor told us how proud
she was of Rees, mom, dad and his nurses for keeping Rees healthy and thriving at
home.
Rees is always covered when he is out of the house so he avoids any contact with
germs. Mom should have done the same. I got a horrible stomach virus that hit in the
middle of the night on Friday. I was quarantined to my bedroom and bathroom. I could
only see Rees on our closed circuit tv. Ya Ya came to help Dad since we didn’t have
round-the-clock nurses for the weekend. When I finally got to see Rees on Monday
afternoon, he looked like he had grown a pound. Babies do change every day.
Wednesday is a big day for Rees. We are turning his vent settings down to peep of 3.
This is the natural peep level of the body, meaning if he handles this setting, he may
not need the vent for much longer. Please take a big breath for Rees and say a big
prayer that his lungs are ready. He is definitely giving us the signal that he thinks he is
ready—constantly pulling off the vent tubing from his trach and waving it in the air.
What a fun game.
We are anxiously awaiting the call that Rees’ hearing aids are ready. We are hoping it
will be this week.
September 4 - Rees' New School
This morning we called the Center for Hearing and Speech. They have remarkable
programs for children with hearing lost. We are familiar with CHS from our close friend
Renee who is the director. They wanted to get Rees on the fast track to hearing so they
met with us today so we could do the paperwork to enroll Rees in his first school. As
soon as his hearing aids arrive, probably next week, Rees will start speech therapy. For
about one year Rees will have intensive individual sessions, then he will move to more
of a school setting. They also have a preschool to get gets ready for elementary school.
We are amazed how fast everyone is working to help Rees hear as quickly as possible.
The Center for Hearing and Speech is another tremendous resource that is right in our
backyard in Houston.
Rees is continuing to make huge strides in mobility. He is rolling, rolling, rolling---until
his feeding tube is wrapped around his neck and vent tubes are like spaghetti. He is
crawling better and better and starting to figure out to incorporate his arms. He does
only go in one direction: away from the vent.
September 3 - Let the Weaning Begin
This morning Dad turned down my ventilator settings from cpap/peep 7 to 5. I have had
a great day with no problems, “sating” 100. We are praying hard that Rees has no
problems weaning off the vent this month, so he will be free off the tubes to his trach in
early October.
Today is my great grandmother LuLu’s birthday. Yesterday she surprised me and mom
with a visit. It was great to see her, and Aunt Lynn too.
Today Gi Gi had to go back to Indiana. We had a fun visit. Rees has to wait until RSV
season is over for her to come back. That is a really long time.
September 2 - Rees' Next Hurdle
On Friday, we spent 6 hours at TCH in the audiology department for Rees’ hearing test.
Rees had a grand time playing in the big crib with flat mattress. Rolling. Laughing.
Rolling. Even after he had two doses of sedatives. So mom held him and he slept
through the procedures. The results were that Rees has moderate to severe
sensorineural hearing loss in both ears, which means he cannot hear voices. That night
they made molds of his ears for tiny hearing aids. With hearing aids he should have no
problems hearing. (The cochlear implants are for those with profound hearing loss—
Rees is not near that range.)
Mark and I were of course disappointed with the news. Rees has faced so many
challenges and, although we knew hearing loss was a risk from the start, we were
hoping he wouldn’t have to deal with this hurdle. We are so very very thankful that he
does not have total hearing loss and that there is wonderful technology to help him, and
that it was diagnosed early.
The audiologist repeatedly apologizing for having to give us “horrible” news. This made
Mark and I laugh. I’m sure the majority of the people she delivers this news to do think
of it as “horrible.” We told her news is not considered horrible if is does not come with
survival statistics—we know this from lots of experience.
Rees has always been at high risk for hearing damage: prematurity, ventilator,
infections, harsh antibiotics, but the one risk we weren’t aware of, until we started
reading through some of the mounds of information packets we were given, was
hyperbilirubinemia (jaudice) which Rees had so severely from the TPN (iv nutrition).
What a tough, precious angel. We can’t wait for Rees to get his hearing aids so he can
hear us tell him how much we love him.
Other news from the week…Rees had his helmet fitted on Monday. Thursday was
Rees’ 10 month birthday. We survived the thunderstorms this week with only a one-
minute power outage. We did very well getting Rees’s ventilator hooked up to the back-
up battery in the dark. Happy birthday to cousin Fi on Friday. Gi Gi came in from Indiana
on Friday. Rees is a long, lean wiggle machine compared to her last visit. She can really
see a difference in his head shape from the helmet.
| LoneStarPotts |
| In the car on the way to the hospital |
| Hanging out with dad at TCH |
| Dad let me chew on an apple |
| Mom's first look at my entire face at home |
| A fun picnic in the park |