Tapp Allen Glass at 5 months old:
Tapp Allen is almost 5 months old and like all new parents, we are adjusting. At the time of my last writing Tap Allen showed no signs or symptoms, other than a minor heart defect, of Potocki-Lupski Syndrome. A little more than a week ago we discovered that he was throwing his little arms out of socket and that his head control was not where it needed to be. He is in no pain when this happens and his arms freely flow in and out of alignment. We have started physical therapy and his beautiful mother works him out nightly with an array of different neck and head exercises.
We have now been totally released from the heart, lung, kidney, and eye doctors. The hole in Tapp Allen's heart has closed and will require no medications or surgeries and although the sleep apnea test was on of the worst things we have had to endure he made it through just fine.
Tapp Allen continues to suffer from GERD or severe reflux. Currently he eats 5 times a day and a little more than 5 ounces of Allimentum and 4 teaspoons of rice cereal per bottle. He also started daycare last week and so far he has not been thrown out. The ladies that keep him say that he is doing well
and is generally happy most of the time.
It is clear that Tapp Allen loves his mother, although I have to admit that I am in love with her to. You have no idea how much I enjoy watching the two of them together. Polly was put on this earth to be Tapp Allen's mother, I just feel sorry that she ended up with me instead of some dude like Brad
Pitt.
Polly and I recently got a break and went to Rosemary Beach, FL for a week with 5 other couples that were our college friends. (Arkansas and Ole Miss). It really is funny when you think about it, all of the guys graduated from Arkansas and all but one of the girls graduated from Ole Miss. Did I mention
no kids. The police were not called, however it should have happened one night. We had a wonderful time, drank some new wine and enjoyed some wonderful food. It was a much needed break after the year we have had. Not long after we got back from Florida we headed on down to New Orleans for his
baptism. Somewhere around 20 friends and family came in from places like Little Rock, Birmingham, and Atlanta to see this perfect child get baptized by the very right Reverend Henry Hudson of Trinity Episcopal Church in the garden district. (Henry married Polly and I a little over 3 years ago in
Little Rock.)With football season upon us our lives will settle down and our weekends will consist of a grill, a wood burning fireplace, and a big screen TV. I hope!!!!
As always if anyone would like to contact me please feel free to do so. You can reach me at 501-247-0560 or matthew.glass@fidelitybanker.
Thanks,
Matthew Glass
We have now been totally released from the heart, lung, kidney, and eye doctors. The hole in Tapp Allen's heart has closed and will require no medications or surgeries and although the sleep apnea test was on of the worst things we have had to endure he made it through just fine.
Tapp Allen continues to suffer from GERD or severe reflux. Currently he eats 5 times a day and a little more than 5 ounces of Allimentum and 4 teaspoons of rice cereal per bottle. He also started daycare last week and so far he has not been thrown out. The ladies that keep him say that he is doing well
and is generally happy most of the time.
It is clear that Tapp Allen loves his mother, although I have to admit that I am in love with her to. You have no idea how much I enjoy watching the two of them together. Polly was put on this earth to be Tapp Allen's mother, I just feel sorry that she ended up with me instead of some dude like Brad
Pitt.
Polly and I recently got a break and went to Rosemary Beach, FL for a week with 5 other couples that were our college friends. (Arkansas and Ole Miss). It really is funny when you think about it, all of the guys graduated from Arkansas and all but one of the girls graduated from Ole Miss. Did I mention
no kids. The police were not called, however it should have happened one night. We had a wonderful time, drank some new wine and enjoyed some wonderful food. It was a much needed break after the year we have had. Not long after we got back from Florida we headed on down to New Orleans for his
baptism. Somewhere around 20 friends and family came in from places like Little Rock, Birmingham, and Atlanta to see this perfect child get baptized by the very right Reverend Henry Hudson of Trinity Episcopal Church in the garden district. (Henry married Polly and I a little over 3 years ago in
Little Rock.)With football season upon us our lives will settle down and our weekends will consist of a grill, a wood burning fireplace, and a big screen TV. I hope!!!!
As always if anyone would like to contact me please feel free to do so. You can reach me at 501-247-0560 or matthew.glass@fidelitybanker.
Thanks,
Matthew Glass
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Potocki-Lupski Syndrome? What you talking about Willis?
Well if you are reading this than you are either lost, know someone with
Potocki-Lupski Syndrome, or are in the medical field. I have to be honest
being the Dad of a special needs child is awesome and frustrating. The
awesome part is that Tapp Allen is just incredible and he is only 3 months
old. The frustrating part is that my wife and I have no idea what life for
Tapp Allen will be like.
We learned of Tapp Allen's diagnosis just a couple of weeks after coming
home. After receiving genetic counseling in the NICU at 1 week old, we were
told that our little boy would look like us and be as smart as us and that
if he did have something going on he would either grow out of it or we could
correct it with a surgery of some kind. Obviously, everyone involved
including the geneticist was shocked by the results of his test. After some
soul searching and to be honest a few tears, we went on with our life. Our
little boy was not dying. He was not being diagnosed with a disease that
would end his life prematurely. He was being diagnosed with an extremely
rare syndrome that no one had ever heard of and that no one really knew what
to do about.
What we learned was that there are unfortunately a whole series of problems
associated with PTLS. As I write this I am just 8 hours away from checking
my little man into Children's hospital for the night so he can have a sleep
study done to check for sleep apnea. So far the only problem we know for
sure he has is a heart defect. This heart defect is minor and chances are it
will have no adverse affects on his life. Really at this point we are just
typical first time parents with extra doctor appointments. We think he is
going to die when he coughs and we think there is something seriously wrong
when he cries. From what I have gathered these feelings are fairly common
among first time parents.
The biggest thing we need right now is information. Mainly, information from
other parents whose kids have PTLS. As far as we know Tapp Allen was the
youngest ever diagnosed at 3 weeks old. I would love to no how life has
turned out for some of the older kids that have PTLS. As far as we know
Christian is the oldest kid with PTLS and he is in his early twenties.
The questions we have are endless but here are a few:
Tapp Allen eats like crazy and gains weight great. Other than the first week
of his life he has gained an appropriate amount of weight. Was this your
experience with your kid?
Tapp Allen can only tolerate Similac Allimentum and takes Prevacid to
control his reflux? At what point will he begin to get over the refux?
Tapp Allen meets all of the developmental milestones at this point in his
life. Is that normal for kids with PTLS? He has already seen an occupational
therapist, speech therapist, and a physical therapist. They all say that at
this time he is at or ahead of where a 3 month old should be.
Please feel free to contact me at 501-247-0560 or at
matthew.glass@fidelitybanker.
Sincerely,
Matthew Glass
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Love really is blind
 |
| Tapp Allen Glass at 6 months |
honestly say that at this point in my life I could not be happier. Tapp
Allen laughs and plays far more than he cries and eats far more than he
spits up. Just last night Polly (my beautiful little wife) and I were
commenting on just how perfect he is. The past 6 months have not even been
close to being filled with tears and heartaches. It has been by and large
wonderful. Although we know there will be tough moments ahead-we realize
they will be nothing but moments and those only last a minute. The memories
of our sweet little 6 month old boy laughing, as he is sandwiched between
Polly and I will, last a life time. I hope when the tough moments come we
will remember this.
This week has been and will continue to be a busy week for the Glass
household. Tapp Allen underwent his special needs testing at the school we
hope to place him in. They performed 2 different tests on him, the names of
which I have forgotten. The tests consisted of verbal skills, feeding
evaluations, fine and gross motor skills, cognitive, etc etc. He performed
so well on his exams. He passed everything with flying colors. You could not
even tell this little boy has PTLS. I was amazed. I was even more amazed
when the administrators of the exams explained to me that he had failed all
six categories of both exams. How in the world could he have performed so
poorly? He did great. Love. He performed great because my eyes were filled
with love. The love that only a mother and father know, a love that has
changed my life and the way that I will look at life forever.
Tapp Allen will start his new school on October 7th and it can not get here
fast enough for me. Tapp Allen's new class will consist of 1 teacher and 3
new friends. Currently we are at a great daycare, however we have 2 teachers
and 12-14 kids. There is no doubt that this new environment and way of
learning will produce big dividends later in life for our little guy. He
still receives physical therapy 2 times a week from a licensed therapist and
receives therapy seven days a week from Polly.
Recently Tapp Allen has started to roll over and he loves it. He actually
did it the first time on his 5 month birthday and has never stopped. He
still hates tummy time but I hate going to the dentist-what are you going to
do. Our lives could not be much better right now and I hope that yours is
too.
