November 2007, Month 5 at Home
November 22 - Happy Thanksgiving
We are full of thanks! All day we couldn’t believe what a contrast it was from last
Thanksgiving. Last year our little angel was so sick and we were terrified. The doctors
were running out of options to help him. Today, we have a vibrant baby boy who kicks
and smiles and melts our heart with joy.
Mark and I have tried to go back on the website to read the accounts of a year ago, but it
is too painful. On this day we are especially thankful to God, our doctors and nurses, and
our friends and family for helping us get through the hardest year we could imagine.
Today Pop Pop came to celebrate with us. Rees had a little taste of sweet potatoes.
After dinner we went for a walk in the wintry Houston weather—yes it actually got down
into the 50s today. We bundled Rees up in his winter clothes and took him out in his
stroller. He fell asleep in no time.
Because we have entered the heart of RSV season and we have heard of several cases,
we are battening down the hatches at the Potts house to minimize Rees’ exposure to
the deadly virus. We only have a few months to go until the trach can come out and we
don’t want to chance anything.
Last weekend Rees helped Aunt Carrie came to celebrate her birthday. Then his Aunt
Tina from California came to meet Rees for the first time. Rees, mom and dad had a fun
time.
Rees had his first hearing test with his hearing aids on Monday in the sound booth. This
test helps the audiologists know if Rees is starting to process sound and if his hearing
aids need adjusting. Older kids raise their hand when they hear a sound. With infants,
two audiologists watch Rees for hearing signs including turning toward sound, change
in respiration, change in facial expression, stopping movement, focusing of eyes. Mark
and I were in the booth with Rees and we could tell he was reacting to most of the
tones, so we thought he did a pretty good job. After the test we were surprised with his
audiologists’ reaction. They thought he did a fantastic job. For his young “hearing age”
Rees did a great job—not all new listeners make this much progress so quickly. Yippee
for our little listener!
November 15 - Helmet Graduate
On Wednesday we had an appointment with Rees’ best buddy Dr. Bloss. We also got to
see Dr. Minkes. The two have operated on Rees numerous times. Even when Rees
wasn’t on their schedule, they would stop and check on him. It is much better seeing
them in their office instead of the NICU. Rees will love to visit them in a few years—they
have a carrousel in the waiting room.
We scheduled what we hope will be Rees’ final surgery on December 3. He will have his
hernias repaired and his “circ.” Rees’ hernias were discovered when he was less than
a month old. Hernias are very common with preemies. It is best to repair them before
kids get too active because if the intestine slips down while they are running around it
could cause a tear—we want to avoid any other perforations.
For Rees it will also be better to have the surgery while he still has the trach. This way
he avoids getting intubated. The surgery is expected to be an out-patient procedure, so
we will be home that evening if all goes well.
On Thursday Rees had his final appointment at Dynamic Orthodics. He officially
graduated from his helmet. We received his head shots from his first visit and
commencement photos of Rees’ beautiful round head.
In the parking lot when I was loading Rees in the car to go home, we met another family.
The mother handed me a booklet and asked if I had it. It was a resource guide for kids
with special needs. I told her that we have it, love it and used it to get Rees Medicaid.
She asked about the Medicaid process and I told her that the reason we figured out how
to get it was that we talked to the lady who wrote the resource guide Elaine Hime and
she pointed us in the right direction. She said “I am Elaine Hime.” I started crying and
gave her a huge hug. She has no idea how many families she has helped get through
difficult times. Another angel we have meet on our adventure. Here is a link to the
resource guide for those who may need it: http://www.projectdocchouston.
org/pdf/resguide.pdf.
November 11 - Houston, We have a Tooth!
Rees had his 1-year check up on Wednesday. He got a good report and then 5 shots.
Ouch. He was very mad. He usually gets over it quickly, but he was very mad all day
and night. The next day we made a discovery which might have explained it: Rees’ first
tooth. He never had swollen gums, but had been leaving puddles of drool where ever he
goes. All of a sudden on Thursday we noticed a little slit in his gum. The next day we
could feel the sharp little tooth.
Last week we got the results of Rees’ MRI. Basically the same as the CT scan (PVL and
small brain size), which we consider wonderful news because no new abnormalities
were found. It was also confirmed that Rees has an auditory and optical nerve, which is
also very good news. Each were slightly smaller than normal, but some improvement
can be expected with growth and stimulation. We were worried about Rees’ vision. If
vision problem is caused neurologically there is nothing that can help restore it. Now it
seems any vision problems may be eye related, which can be treated with glasses,
contacts and surgery. Lately though Rees’ eyes are focusing and he intently watches
and tracks. A marvelous breakthrough. We know he can see!
Rees got back up to full feeds from his super bug and now we are slowly going up on
the rate. By the end of the week, we may be able to disconnect his feeding tube for 4
hours during the day. What freedom that will be.
The Potts crew has been very busy. We have had more nursing woes, so we have many
shifts that are not covered. Luckily mom has more energy than before so we are able to
handle it.
On Thursday I toured the Human Genome Sequencing lab for a museum project. I told
the director I felt like I was meeting a rock star. This project had helped make the
tremendous strides in genetic research—including CML. What heros!
November 2 - Celebrations at the Potts House
Rees had a wonderful 1st birthday! Rees must have made a
special birthday wish for mom because the next day I found out
that I am in complete remission!
On Tuesday, October 30 Rees celebrated his first birthday with over 60 friends who
came by to see him, most for the first time and some for the first time since he left the
hospital. VIP guests included four of his old roommates in NICU Level 3: Malik, Cooper,
Kayla and girlfriend Sophia. How nice to see them on a beautiful day outside the
hospital. What a glorious day to celebrate a year of miracles. Special thanks to Ya Ya,
Susanne and Joan for helping with the party prep.
On Halloween, I got the results from my tests from MD Anderson. I have reached
complete molecular response (remission for CML), which means that my blood and
bone marrow no longer have the mismatched chromosomes that cause the leukemia.
Alleluia! To keep the CML at bay, I must continue to take the chemo pills every day for
the rest of my life, or until the next big thing comes along. I am hoping with a reduced
stress level from not worrying about the meds working, I will start feeling a little better.
I am one of the few that has every side effect from Gleevec, but it is definitely worth it.
That night Rees put on his costume his Aunt Carrie sent him. At first Rees was going to
be an astronaut so we could incorporate his oxygen hoses. With the vent gone, we
worked on incorporating his helmet. Rees was a baby chick coming out of an egg. His
helmet was the top of the eggshell. Our favorite trick-or-treaters were his cousins Fi,
Julian and Aidan.
Rees is still recovering from his stomach bug and working slowly to get back up to his
regular volume and strength of his yummy formula. On Friday, the lab confirmed that he
no longer has a virus. Rees caught the bug from a nurse and then he passed it on to
several victims: Mom, Dad, Ya Ya, Pop Pop, Uncle Brit, Aunt Lynn, Joan and 2 doctors.
(We hope that is all.) We are sooooo sorry for getting everyone sick! We have been so
focused on keeping Rees from catching something that we almost forgot he could
infect others—until now all of his ailments weren’t communicable.
New pics of the birthday boy and our chickadee will hopefully be posted soon—our
computer is a little sick too and has been having trouble with the pic files.
November 22 - Happy Thanksgiving
We are full of thanks! All day we couldn’t believe what a contrast it was from last
Thanksgiving. Last year our little angel was so sick and we were terrified. The doctors
were running out of options to help him. Today, we have a vibrant baby boy who kicks
and smiles and melts our heart with joy.
Mark and I have tried to go back on the website to read the accounts of a year ago, but it
is too painful. On this day we are especially thankful to God, our doctors and nurses, and
our friends and family for helping us get through the hardest year we could imagine.
Today Pop Pop came to celebrate with us. Rees had a little taste of sweet potatoes.
After dinner we went for a walk in the wintry Houston weather—yes it actually got down
into the 50s today. We bundled Rees up in his winter clothes and took him out in his
stroller. He fell asleep in no time.
Because we have entered the heart of RSV season and we have heard of several cases,
we are battening down the hatches at the Potts house to minimize Rees’ exposure to
the deadly virus. We only have a few months to go until the trach can come out and we
don’t want to chance anything.
Last weekend Rees helped Aunt Carrie came to celebrate her birthday. Then his Aunt
Tina from California came to meet Rees for the first time. Rees, mom and dad had a fun
time.
Rees had his first hearing test with his hearing aids on Monday in the sound booth. This
test helps the audiologists know if Rees is starting to process sound and if his hearing
aids need adjusting. Older kids raise their hand when they hear a sound. With infants,
two audiologists watch Rees for hearing signs including turning toward sound, change
in respiration, change in facial expression, stopping movement, focusing of eyes. Mark
and I were in the booth with Rees and we could tell he was reacting to most of the
tones, so we thought he did a pretty good job. After the test we were surprised with his
audiologists’ reaction. They thought he did a fantastic job. For his young “hearing age”
Rees did a great job—not all new listeners make this much progress so quickly. Yippee
for our little listener!
November 15 - Helmet Graduate
On Wednesday we had an appointment with Rees’ best buddy Dr. Bloss. We also got to
see Dr. Minkes. The two have operated on Rees numerous times. Even when Rees
wasn’t on their schedule, they would stop and check on him. It is much better seeing
them in their office instead of the NICU. Rees will love to visit them in a few years—they
have a carrousel in the waiting room.
We scheduled what we hope will be Rees’ final surgery on December 3. He will have his
hernias repaired and his “circ.” Rees’ hernias were discovered when he was less than
a month old. Hernias are very common with preemies. It is best to repair them before
kids get too active because if the intestine slips down while they are running around it
could cause a tear—we want to avoid any other perforations.
For Rees it will also be better to have the surgery while he still has the trach. This way
he avoids getting intubated. The surgery is expected to be an out-patient procedure, so
we will be home that evening if all goes well.
On Thursday Rees had his final appointment at Dynamic Orthodics. He officially
graduated from his helmet. We received his head shots from his first visit and
commencement photos of Rees’ beautiful round head.
In the parking lot when I was loading Rees in the car to go home, we met another family.
The mother handed me a booklet and asked if I had it. It was a resource guide for kids
with special needs. I told her that we have it, love it and used it to get Rees Medicaid.
She asked about the Medicaid process and I told her that the reason we figured out how
to get it was that we talked to the lady who wrote the resource guide Elaine Hime and
she pointed us in the right direction. She said “I am Elaine Hime.” I started crying and
gave her a huge hug. She has no idea how many families she has helped get through
difficult times. Another angel we have meet on our adventure. Here is a link to the
resource guide for those who may need it: http://www.projectdocchouston.
org/pdf/resguide.pdf.
November 11 - Houston, We have a Tooth!
Rees had his 1-year check up on Wednesday. He got a good report and then 5 shots.
Ouch. He was very mad. He usually gets over it quickly, but he was very mad all day
and night. The next day we made a discovery which might have explained it: Rees’ first
tooth. He never had swollen gums, but had been leaving puddles of drool where ever he
goes. All of a sudden on Thursday we noticed a little slit in his gum. The next day we
could feel the sharp little tooth.
Last week we got the results of Rees’ MRI. Basically the same as the CT scan (PVL and
small brain size), which we consider wonderful news because no new abnormalities
were found. It was also confirmed that Rees has an auditory and optical nerve, which is
also very good news. Each were slightly smaller than normal, but some improvement
can be expected with growth and stimulation. We were worried about Rees’ vision. If
vision problem is caused neurologically there is nothing that can help restore it. Now it
seems any vision problems may be eye related, which can be treated with glasses,
contacts and surgery. Lately though Rees’ eyes are focusing and he intently watches
and tracks. A marvelous breakthrough. We know he can see!
Rees got back up to full feeds from his super bug and now we are slowly going up on
the rate. By the end of the week, we may be able to disconnect his feeding tube for 4
hours during the day. What freedom that will be.
The Potts crew has been very busy. We have had more nursing woes, so we have many
shifts that are not covered. Luckily mom has more energy than before so we are able to
handle it.
On Thursday I toured the Human Genome Sequencing lab for a museum project. I told
the director I felt like I was meeting a rock star. This project had helped make the
tremendous strides in genetic research—including CML. What heros!
November 2 - Celebrations at the Potts House
Rees had a wonderful 1st birthday! Rees must have made a
special birthday wish for mom because the next day I found out
that I am in complete remission!
On Tuesday, October 30 Rees celebrated his first birthday with over 60 friends who
came by to see him, most for the first time and some for the first time since he left the
hospital. VIP guests included four of his old roommates in NICU Level 3: Malik, Cooper,
Kayla and girlfriend Sophia. How nice to see them on a beautiful day outside the
hospital. What a glorious day to celebrate a year of miracles. Special thanks to Ya Ya,
Susanne and Joan for helping with the party prep.
On Halloween, I got the results from my tests from MD Anderson. I have reached
complete molecular response (remission for CML), which means that my blood and
bone marrow no longer have the mismatched chromosomes that cause the leukemia.
Alleluia! To keep the CML at bay, I must continue to take the chemo pills every day for
the rest of my life, or until the next big thing comes along. I am hoping with a reduced
stress level from not worrying about the meds working, I will start feeling a little better.
I am one of the few that has every side effect from Gleevec, but it is definitely worth it.
That night Rees put on his costume his Aunt Carrie sent him. At first Rees was going to
be an astronaut so we could incorporate his oxygen hoses. With the vent gone, we
worked on incorporating his helmet. Rees was a baby chick coming out of an egg. His
helmet was the top of the eggshell. Our favorite trick-or-treaters were his cousins Fi,
Julian and Aidan.
Rees is still recovering from his stomach bug and working slowly to get back up to his
regular volume and strength of his yummy formula. On Friday, the lab confirmed that he
no longer has a virus. Rees caught the bug from a nurse and then he passed it on to
several victims: Mom, Dad, Ya Ya, Pop Pop, Uncle Brit, Aunt Lynn, Joan and 2 doctors.
(We hope that is all.) We are sooooo sorry for getting everyone sick! We have been so
focused on keeping Rees from catching something that we almost forgot he could
infect others—until now all of his ailments weren’t communicable.
New pics of the birthday boy and our chickadee will hopefully be posted soon—our
computer is a little sick too and has been having trouble with the pic files.
| LoneStarPotts |
| Standing, holding onto a block and loving the freedom! |
| Joaquin and I - he's a former preemie but doesn't act like it. |
| Mom and Dad took me to Hermann Park for a breakfast picnic. |
| It was such I nice day that I decided to take a nap in the back yard. |
| Dad gave me a Tootsie Roll Pop as part of my feeding therapy. |
| My first roadtrip was to YaYa and PopPop's new house. |
| Cousins Thomas and Camryn! Good to finally meet. |
| NO NG TUBE AND NO TAPE! |
| The Sophias and The Reeses. |
| Dad is getting me revved up for Halloween. |
| Uncle Brit helped mom and dad out while they were sick with a stomach virus. He and I talked about hunting, fishing and getting dirty. |
| Mom, Dad and the star of the birthday party. |
| YaYa and I share a birthday laugh. |
| Check it out...I am wearing a rugby jersey! That means that I wear big boy clothers now. |
| Happiness is tape on one cheek only! |
| Hey! Who's a sweetie pie guy? |
| The cylinder with white ends is called an HME (heat moisture exchanger). It is attached to my trach and keeps moist air in my respiratory system. |
| Thanks for the costume Aunt Carrie! |
| I am a chick! Hear me chirp! |
