Tuesday, July 5, 2016
Tuesday, July 30, 2013
A Poem
Yesterday, as I watched Aidyn play with his cars and listened to him bring the characters to life, I thought about how he lives his life without skipping a beat, all while he deals with the stomach pains on a daily basis. These are the kind of pains that may send you to the doctor or hospital, but not if you have a chronic condition like short bowel syndrome, or any other digestive disease. These sometimes hurt very bad because of the build up of gas and other times it's a real annoyance. He eats and drinks all day long to keep up with his four year old life; everything goes right through him. It causes him to have about five bowel movements a day.
His stomach distends at the height of all the consumption. You can see his discomfort. But he continues on because he doesn't want to be bothered. And because he doesn't want to be bothered, he hardly let's the discomfort show. As his Mom, I know when he needs relief, and I pester him to go use the bathroom. Reminding him it will get worse if he doesn't. I don't envy what he puts up with. He is constantly showing us how to be strong people. But sometimes we need a reminder of his reality.
I think putting into words what he must feel like everyday helped me a lot. My husband read this poem and said it was sad. It is. It is not to be sugary and sweet, but real. It is supposed to make you feel. I hope it makes anyone who reads this think twice before judging others. It's not always plain to see if a person is living a struggled life. But maybe we can all be less critical and give a compassionate smile to one another, because it may be what a person with chronic condition may need to push on through their day.
Model, Aidyn Stephany
Poem and photo, 2013 © Liz Stephany
Ups and Downs
I am sorry I haven’t kept up with Aidyn's status lately. I’ll give a quick rundown then go into
detail. From October last year to now
Aidyn has had walking pneumonia, bacterial overgrowth, kidney stones, newly
diagnosed allergies, his first ear infection and low very low vitamin D. He
missed many days of school, but he never fell behind. It sounds like he has
been through a lot, and he has, but in between it all there were many good
times and he kept a smile on his face.
So back in October, I
took Aidyn into the pediatrician for what I thought was a chest cold. To the
doctor’s surprise, Aidyn had walking pneumonia. Joseph and I had an out of town
date set for the very next day, something we hadn't done since Aidyn was born. We
planned on having Aidyn and Alyssa stay the night with Grandma and Grandpa
Stephany, but I was worried. The doctor assured me it was ok for us to go since
Aidyn was energetic and still in good spirits. He prescribed Aidyn Amoxicilin,
and soon after taking it, the cough lessened. We went to our out of town
concert and had a fun night together. When we got back, Aidyn felt much better,
but was dealing with side effects to the antibiotic. It wiped out all the good
bacteria in his gut and caused him to stool a lot. Having a short gut,
especially as short as Aidyn’s, means not having enough protection against
illness and bacteria. Aidyn did a course of Flagyl to kill
off the bacterial overgrowth and I upped his probiotics. He was back to his
regular schedule in a couple weeks.
Cousins are great fun! |
The holidays went
smooth, for the most part. Aidyn looked forward to Halloween. He insisted on
being a ghost. Grandma Stephany made him a costume, but when the day came,
Aidyn had no interest in getting dressed up. He eventually put on the costume and
went trick-or-treating. He was back in a quick 10 minutes. He had more fun
passing out candy. In November, a Polar Express trip to Williams, AZ was cancelled
because Aidyn caught a bad cold. We didn’t want to make matters worse with the
freezing temperatures and rescheduled for January. Thanksgiving was a
great holiday. My Dad and family came for a visit. We hadn’t seen my brother in
a few years and it was a great reunion. Aidyn was so happy to have a playmate
his age. When it was time for our visitors leave, Aidyn did not want to say
goodbye. Christmas was another great time spent together. Santa pleased the
kids and we had a nice Christmas dinner with my in-laws.
Christmastime! |
New Years with Grandma Charles (my step mother, Abeba) and Aunt Helen. |
After New Years, we
had our Polar Express trip. It was a family trip which included Joseph’s parents.
It was their Christmas gift to us and we were thrilled to experience the famous
train ride to the North Pole with them. Aidyn loves trains, so this was extra
special to him. It had recently snowed in Williams, so after arriving there, we
all played in the snow. The kids had so much fun.
A couple hours before
we were to board the train, Aidyn started complaining of stomach pain, but
pushed on. When it was time to board the train, Aidyn started to feel very
uncomfortable. A trip to the restroom on board gave him little relief. On our
20 minute ride to the North Pole, Aidyn got increasingly worse. Alyssa tried
her best to help Aidyn enjoy the trip. He ended up falling asleep to deal with
the pain. There was nothing we could do until we got back. Aidyn did wake up to
see and talk to Santa. He joined in some Christmas carols. We all felt bad that
his experience was not as fun as it should have been. When we got off the train
and back at the hotel, Aidyn was experiencing the worst stomach pains I have
ever seen. I didn’t know what to do. The poor guy was in and out of the
bathroom every 10 minutes trying to relief the pressure building up in his
stomach. He was extremely distended. After taking Tums, he managed to fall
asleep and the next morning he seemed ok. As we drove our three hour drive back
home, the discomfort set in again. The next day we called his GI Specialist and
she said he was having a major case of bacterial overgrowth. We started him on
Flagyl and it relieved his symptoms. Since then we keep Flagyl on hand and
start a 10 day course at the first signs of overgrowth.
Even though he wasn't feeling well, he tried to enjoy his cookies. |
In February, Aidyn had
a check up with his GI specialist. She was very happy with his progress despite
a couple hiccups. She said we could come back in three to four months, rather
than one or two. He weighed 28.9 lbs, or 13.1 kg. It was a one pound gain since
his appointment in October. What we noticed was Aidyn can to stay stable or
continue to gain weight over time even if he has bumps along the way. That is so
awesome! The game plan stayed the same except we were able to stop using liquid
vitamins and start using a regular children’s multivitamin. To make life a
little easier, I decided I would give Aidyn his B12 shots, eliminating the need
for 50 minute trips to and from the hospital. For the first two years of his
life I gave Aidyn daily injections of blood thinner medication, twice a day. The
B12 shot is more difficult since it goes in the muscle and it goes in much
slower. I am glad those are only given once a month.
Things were looking
good, until later in February. After Aidyn took a course of Bactrim antibiotics
to clear a possible UTI, he passed a few stones. It actually happened two hours
before his follow up appointment concerning his frequent, painful urinations.
While the frequency went away, the pain continued, and after passing the
stones, I knew why. I am so amazed that Aidyn did not end up in the hospital.
He just dealt with the pain so he could live life. He wanted to go to
school every day, play at home and do his normal things. Don’t get me wrong, he
still complained of painful urination, but he really downplayed it. He cried right before passing the stones but right after he was elated. He said, and I quote, “I can’t believe
this! It doesn’t hurt when I walk!” and “I can bend down and play with toys,
and it doesn’t hurt!” He was so happy. I just stood there in shock and felt
guilty. I had collected the stones and had the pediatrician send them to the lab.
Calcium oxalate stones |
In March, Aidyn saw the
Urologist. He had an x-ray and ultrasound, and no other stones were found. We
found out the stones were calcium oxalate kidney stones. Two bacteria were
found in his urine at this time. They were Enterococcus and Citrobacter
Freundii strains. He was prescribed Amoxicilin for 10 days and it didn’t clear.
He was then prescribed Ciproflaxin for 10 days. We ran labs again and those
bacteria were gone, but there was still some bacteria hanging around.
Unfortunately, Aidyn had to give a urine sample by catheter. It was very
painful because he was not relaxed, but thankfully, the results came back
completely negative.
The beginning of April,
Aidyn saw the Allergist. We were hoping he out grew the milk allergy, unfortunately he did not. He is strongly allergic to cow’s milk and beef. He still has a slight allergy
to bananas and wheat. I had other foods tested and Aidyn reacted to almond,
corn, peanut, soybean, avocado and sunflower seed. I haven’t removed those newly
found foods from his diet yet because of all that he had been dealing with. While
being tested for foods I had him tested for environmental allergies. He also has allergies to cats, dogs and many native trees and grasses. He now takes
Zyrtec as needed and will use Flonase when his nose gets very congested.
Hopefully soon I will be doing an elimination diet with all the new foods to
see how his body really reacts. It will be difficult since a lot of what he
eats has some amount of soy or corn in it. I am sure these additional allergies
have contributed to Aidyn having his first ear infection. It wasn’t a good time
for it to happen as he was still trying to get over passing kidney stones. After
being successfully being treated for the ear infection, he developed a cough. I was worried he
had walking pneumonia again. It turned out his allergies caused him to have
asthma like symptoms. It was one of the worst allergy seasons. After a week of breathing treatments and Prednisone,
Aidyn was himself again. He has used Albuterol on a couple more occasions since
then.
A few days before his birthday, Aidyn finally saw the Nephrologist (Kidney Specialist). He concluded the kidney stones were related to having short bowel syndrome. It is typical for people with short bowel syndrome to have a buildup of calcium oxalate in their kidneys, which then crystallize and then form stones. This happens especially with those people who have a lot of small intestine missing but with a good amount of large intestine intact, like Aidyn. There are a few ways to help prevent the stones from forming: not eating high oxalate foods, drinking a lot of water or taking medicines. Because Aidyn relies on any amount of food he can eat, the doctor didn’t want to start removing more foods. Also, making him drink more water than he does might take away from his Elecare supplemental formula. So, he is taking Calcium Carbonate everyday to help absorb excess oxalate. Later in April, Aidyn had his routine check up with the GI doctor. His health was better, but barely gained any weight. We decided we would check back in two months and make no changes.
A few days before his birthday, Aidyn finally saw the Nephrologist (Kidney Specialist). He concluded the kidney stones were related to having short bowel syndrome. It is typical for people with short bowel syndrome to have a buildup of calcium oxalate in their kidneys, which then crystallize and then form stones. This happens especially with those people who have a lot of small intestine missing but with a good amount of large intestine intact, like Aidyn. There are a few ways to help prevent the stones from forming: not eating high oxalate foods, drinking a lot of water or taking medicines. Because Aidyn relies on any amount of food he can eat, the doctor didn’t want to start removing more foods. Also, making him drink more water than he does might take away from his Elecare supplemental formula. So, he is taking Calcium Carbonate everyday to help absorb excess oxalate. Later in April, Aidyn had his routine check up with the GI doctor. His health was better, but barely gained any weight. We decided we would check back in two months and make no changes.
In May, Aidyn completed
his first year of preschool. He has done an amazing job attending school and
receiving speech therapy there. Aidyn’s speech has greatly improved since last
August and his teachers find him to be a joy in class. Monthly reports revealed
he is doing well in all areas and sometimes even better than his older peers.
We saw the GI doctor in June and Aidyn gained weight! He gained 11 grams a day in 2 months, which is more than what the typical four year old gains. He is 30.4 lbs (13.8 kg), and 37.9 in. (96.2 cm). A 1.5 pound weight gain in four months! The doctor doesn't need to see him for six months. We are very pleased.
We are
working on getting his low Vitamin D levels up with the endocrinologist. Aidyn’s Vitamin D seems to fluctuate up and down. In February it
was 25, low in general, but not bad for having a short gut. Last month it was
16. We are going to try vitamin D doses of 50,000 units twice a week (100,000
total). After two months we will do labs and see if it will help.
Haircut by Mommy |
Proud of himself. |
We saw the GI doctor in June and Aidyn gained weight! He gained 11 grams a day in 2 months, which is more than what the typical four year old gains. He is 30.4 lbs (13.8 kg), and 37.9 in. (96.2 cm). A 1.5 pound weight gain in four months! The doctor doesn't need to see him for six months. We are very pleased.
Aidyn's last picture with our beloved Velvet. He passed away one week later. |
With summer here and school out it is challenging finding ways to accommodate Aidyn’s continuous energy. Playing outside is limiting with temperatures over 105 degrees each day. We found going swimming is something he enjoys. We will definitely be getting him swim lessons in the future.
Keeping cool outside. |
Lego Kids Fest |
Aidyn continues to get
physical therapy and at home speech therapy once a week. In two weeks school
starts. He will be happy to see old friends and make new ones again. In the
mean time, we will keep Aidyn healthy and occupied.
Tuesday, April 30, 2013
Four Years!
Aidyn just turned four!
This is not the vision I had of Aidyn’s future four years ago. Because of the poor prognosis he was given and poor outlook on his life, I was expecting a child who would be dependent on machines and severely underdeveloped. Cognitively, Aidyn is probably beyond his years. He is in speech therapy for articulation issues, but he has come a long way since he’s been in school. He loves to talk. He is also in physical therapy once a week to make sure he is developed in all physical areas. He’s a tad behind because of his abdominal surgeries, but he is determined to do things on his own.
If this is your first time learning about Aidyn, for perspective, you could read about the details of Aidyn’s arrival and lack of faith all around us at the hospital when he fell ill there. In a nutshell, Aidyn was given a small percentage of hope to survive when he was just 4 days old. He had 90% - 95% of his small intestines removed and given a central line to nourish him directly through his veins using TPN.
We were given the option several times to let him go. It was not
a possibility for us. And when we made it clear we wanted to keep the machines
on, we were told Aidyn would have a low quality of life if he survived. Aidyn
proved his initial doctors wrong and survived. He surpassed even our
expectations, as we thought he would need a small intestine and liver
transplant, but he has survived without it. Aidyn has been able to live a good
quality life. He has his ups and downs, but he is a fighter and does it all. He
has not been dependent on machines to nourish him since the age of two and he
eats without a feeding tube (never had one, either). He defied all odds! I love
saying that. He is our hero and teacher. We love him more each day.
Another blog entry coming very soon!
The first decorated cake I made for Aidyn |
On April 14th we celebrated among family and enjoyed this special
day. He has come so far! I am so glad we listened to our hearts and not what
may have seemed logical to the doctors in Aidyn’s first days.
Aidyn is a happy,
bright preschooler who loves to play, learn and make new friends. He is very
outgoing and greets just about anyone he passes by. The teachers and his peers
really love him and miss him when he is sick at home. He makes doctor visits easy. He knows those visits are for his well being. He cooperates every time
for the nurses when they need to take his vitals and measurements. The doctor’s
love how easy it is for them to check his eyes, ears, nose and tummy. He says “ahh”
before they ask and lifts his shirt for the exam. He stays still when they
check his breathing and when they are listening to his heart. He answers all of their
questions. He is a model patient. Even
when it time for labs, he barely moves when his arm is stuck with the needle. He watches
closely as the blood moves from his arm to the tubes. When it’s all done he
says, “See it didn't hurt, I didn't cry,” leaving the phlebotomists in awe and a
smile, as he chatters away. One technician said he handles it a lot better than
most adults.
This is not the vision I had of Aidyn’s future four years ago. Because of the poor prognosis he was given and poor outlook on his life, I was expecting a child who would be dependent on machines and severely underdeveloped. Cognitively, Aidyn is probably beyond his years. He is in speech therapy for articulation issues, but he has come a long way since he’s been in school. He loves to talk. He is also in physical therapy once a week to make sure he is developed in all physical areas. He’s a tad behind because of his abdominal surgeries, but he is determined to do things on his own.
If this is your first time learning about Aidyn, for perspective, you could read about the details of Aidyn’s arrival and lack of faith all around us at the hospital when he fell ill there. In a nutshell, Aidyn was given a small percentage of hope to survive when he was just 4 days old. He had 90% - 95% of his small intestines removed and given a central line to nourish him directly through his veins using TPN.
Five days old, one day after surgery, resting in the NICU. |
Another blog entry coming very soon!
Labels:
bacterial overgrowth,
central line,
intestine,
Short Bowel Syndrome,
TPN
Friday, October 5, 2012
Turning a Corner
Happy news!! Aidyn
gained a pound since last month! He is 27.7 pounds, 12.6 kg and 36 inches. He
was a champ getting his B12 shot and giving blood to check Vitamin D levels.
The Dr. was enthusiastic about his progress since he had been stalling with
weight gain for many months. She is happy to discontinue the use of antibiotics
for overgrowth. He is absorbing more and he has not had any setbacks. Aidyn does
not need to go back to clinic for four months. I am so proud of Aidyn, and
myself! It was a great day!
Wednesday, October 3, 2012
Summer in Fall
First ice cream! |
Big Boy bed!! |
Aidyn received his
first dose of B12 shots the beginning of September. He will continue to get
them, with labs done every three months. His weight was checked and I was surprised
Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the
beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.
Much needed haircut done by Mama. |
I have some exciting news!
Aidyn has started Preschool! He goes half a day, four days a week. It has been
over six weeks and it is going smoothly. He did catch a cold three weeks into
school, but he recovered quickly. His speech has improved and it is probably
the combination of Speech Therapy at school, his peers and just plain time. So
far there have been no potty accidents at school. He has good control of his
bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping
by the time he is four he will be potty trained AND off the bottle. Drinking Elecare
formula out of anything else just won’t do. I shouldn't complain because at
least he will still drink it and he has no feeding tubes.
Ready for school. |
Finger paint! |
Recap on Aidyn: He has
only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and
50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition)
for 21 months and drinks Elecare for half his calories. He eats what he can
tolerate which is most meats, gluten-free starches and is limited to carrots,
apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat,
cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36
cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid
vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a
sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He
recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed.
That’s it!
I always pray for
the miracle that he wakes up one day
with everything intact inside. That’s the kind of faith I have and it has
gotten me through it all.
Labels:
bacterial overgrowth,
Elecare,
Fish Oil,
Flagyl,
intestine,
NEC,
Omegaven,
Short Bowel Syndrome,
TPN,
ursodiol,
Vitamin B12,
Vitamin D,
VSL#3
Monday, October 1, 2012
Summer in Boston
Well, I thought I posted this entry, turns out it was waiting for pictures to be added. Here it is:
June 26th marked the 15th time Aidyn had flown to Boston. He knows about everything when it comes to flying on a plane. He has traveling by air since he was 6 weeks old. Our family of four headed to Boston for another clinic appointment at Children's Hospital Boston. I am still very cautious about germs from the general public even though Aidyn doesn't have his central line anymore. Each time we board a flight, I whip out my handy antibacterial wipes and wipe anything within arm’s reach. Using the plane restroom is a task in itself for the average person, imagine bringing in your baby or toddler in, instructing him not to touch a thing so you can wipe all the surfaces before laying him down for a diaper change, or in the case now, getting him to hold on to you while he sits to do his thing during turbulence. Speaking of that, Aidyn did an impressive job at using the commode on the plane, TWICE on the way to Boston and once on the way back. He had dry pull-ups after each landing.
Before coming back home to AZ, we spent a few days relaxing, going to the Museum of Science (which is amazing) and spent an afternoon at Revere Beach.
It was a very nice trip to Massachusetts this summer. We got to spend a wonderful time together and came back with great reports for Aidyn. Aidyn is due back in another 6 months.
June 26th marked the 15th time Aidyn had flown to Boston. He knows about everything when it comes to flying on a plane. He has traveling by air since he was 6 weeks old. Our family of four headed to Boston for another clinic appointment at Children's Hospital Boston. I am still very cautious about germs from the general public even though Aidyn doesn't have his central line anymore. Each time we board a flight, I whip out my handy antibacterial wipes and wipe anything within arm’s reach. Using the plane restroom is a task in itself for the average person, imagine bringing in your baby or toddler in, instructing him not to touch a thing so you can wipe all the surfaces before laying him down for a diaper change, or in the case now, getting him to hold on to you while he sits to do his thing during turbulence. Speaking of that, Aidyn did an impressive job at using the commode on the plane, TWICE on the way to Boston and once on the way back. He had dry pull-ups after each landing.
This time around, we wanted to make a vacation out of the trip. We took
advantage of all the miles we had and were able to pay for two tickets
at $99 round trip each, one for free and the other at full price. We stayed in
Burlington, a suburb of Boston and enjoyed the cooler weather Massachusetts
had. It was nearly 100 degrees in Phoenix when we left and a nice, cool 67
degrees when we landed in Boston. It averaged about 85 degrees during the day, perfect. We arrived a couple nights before Aidyn’s
appointment to relax and recover from the three hour jet lag. After a
day at the Burlington Mall (where "Paul Blart: Mall Cop" was filmed), Aidyn had his first dip in a public pool, the hotel
pool. He had fun going in and out of the cold pool, which surprised me because he never likes playing in the splash pads back at home .
Although long, Aidyn’s appointment with the CAIR team the next day went very well. He happily picked out a toy from the gift shop for having had to wait so long and for giving what a lot of blood for lab work. Everyone, the surgeon, nutritionist, GI specialist and nurse practitioner, all agreed that Aidyn was doing quite good. His weight was 27 lbs 12 oz (maybe a little inflated due to him having his clothes on) and it calculated just right for his height. They felt he was actually taking in enough calories for his growth and encourage us to keep doing what we are doing. We found out his Vitamin D results were 26.1 ng/mL and his B12 was 169 pg/mL. Both a bit low. We will continue to give the over the counter Vitamin D3 at 8000 iu/day and retest in a couple months. As for the B12, Aidyn will start B12 injections again.
Dr. Puder's Omegaven nurse came to see us while we waited for the CAIR team. Alexis chatted with us and with a sense of accomplishment she reminded me that Aidyn was one of the youngest babies to receive Omegaven there at Children’s Hospital. You can see the happiness in her face when she looked at Aidyn, seeing how big and healthy he got was remarkable. She let us know that Dr. Puder would love to see Aidyn and had him paged. We just love that man! He looks at Aidyn and without a second thought says he’s doing just fine. He chats with us about this and that, and then tells us of a conference in Phoenix that he will be attending early next year. He was hoping he could see us and we said we would definitely make it work. By then Aidyn will be almost 4 years old and in preschool.
Although long, Aidyn’s appointment with the CAIR team the next day went very well. He happily picked out a toy from the gift shop for having had to wait so long and for giving what a lot of blood for lab work. Everyone, the surgeon, nutritionist, GI specialist and nurse practitioner, all agreed that Aidyn was doing quite good. His weight was 27 lbs 12 oz (maybe a little inflated due to him having his clothes on) and it calculated just right for his height. They felt he was actually taking in enough calories for his growth and encourage us to keep doing what we are doing. We found out his Vitamin D results were 26.1 ng/mL and his B12 was 169 pg/mL. Both a bit low. We will continue to give the over the counter Vitamin D3 at 8000 iu/day and retest in a couple months. As for the B12, Aidyn will start B12 injections again.
Dr. Puder's Omegaven nurse came to see us while we waited for the CAIR team. Alexis chatted with us and with a sense of accomplishment she reminded me that Aidyn was one of the youngest babies to receive Omegaven there at Children’s Hospital. You can see the happiness in her face when she looked at Aidyn, seeing how big and healthy he got was remarkable. She let us know that Dr. Puder would love to see Aidyn and had him paged. We just love that man! He looks at Aidyn and without a second thought says he’s doing just fine. He chats with us about this and that, and then tells us of a conference in Phoenix that he will be attending early next year. He was hoping he could see us and we said we would definitely make it work. By then Aidyn will be almost 4 years old and in preschool.
Before coming back home to AZ, we spent a few days relaxing, going to the Museum of Science (which is amazing) and spent an afternoon at Revere Beach.
It was a very nice trip to Massachusetts this summer. We got to spend a wonderful time together and came back with great reports for Aidyn. Aidyn is due back in another 6 months.
Labels:
CAIR,
Children’s Hospital Boston,
Omegaven,
Puder,
Short Bowel Syndrome
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