After three years of silence, I have started blogging again. I had been working on a brand new blog the past couple of months and it's 90% done, but ready to be revealed. I will keep this blog up, but please go to www.aidynstephany.com, or www.thelittlefire.com for new updates!

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.

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. 

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.

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.

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.

Four Years!

Aidyn just turned four! 

The first decorated cake I made for Aidyn

On April 14^th 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.

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!

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!

Summer in Fall

In Arizona it’s hard to believe Fall has started. Temperatures still top the high 90’s, and sometimes 100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very well keeping hydrated during the summer. I think what has been helpful is that I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave him runny/watery stools the first half of the week long antibiotic cycle. This is how I weaned him: In June, I started to space out the antibiotics by adding a week to the time Aidyn had off of Flagyl (initially only one week). By August he was able to go three weeks off the Flagyl. He’s currently on his fourth week off. 

First ice cream!

Two weeks ago I started adding ¼ teaspoon of baking soda to every 20 oz of water Aidyn drinks. Any extra gas build up he usually got seemed to disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find if I give a drop of oil of oregano for a couple days, it will kill the bacteria that the probiotics missed and the smell will lessen.

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.

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 15^th 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.

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.

Summer is here!

I can’t believe summer is here already! It has started off very hot, so playtime outside is limited due to the high temperatures. By 10 am it is already 90 – 95 degrees. Aidyn had been increasing his fluid intake over the last few months.

Well, on April 14^th Aidyn turned three years old. He has come a long way in the last year. Shortly after his second birthday last year, he had his central line surgically removed by Dr. Puder a couple of hours before his CAIR appointment at Children’s Hospital Boston. I can’t tell you how happy we were to have that line removed. For the next 6 months or so, I kept hoping and praying Aidyn would not have to have one put back in. I am glad to say he is still line free. At the end of May Aidyn saw the GI. Aidyn weighed 12.2 kg, or 26.8 pounds, so he has gained four to five pounds since his line removal, but not without weight fluctuations. I worked very hard in finding the right balance of food and fluid intake to ensure he wouldn’t dump. In my mind, there was no point in allowing Aidyn to eat and drink absolutely any time he wanted if that meant he would lose possible nutrition in a dumping episode. Over time, Aidyn did tolerate feedings and fluids closer together. These days, I do allow him to eat and drink almost anytime he wants. He does haves a tendency to chug down all his fluids, so I control his drinking during meals, allowing ½ to 1 ounce increments between a few bites. It sort of forces him to sip. He still has popsicles that I make from the Ultima Replenisher electrolyte powder to help control his flow of fluid intake, too.

A trip to Sedona in January.

In the last few months Aidyn gained very little weight and it’s difficult to tell why. It could be because the Periactin he was taking was stopped and his appetite went down. Or, maybe he is burning more calories with the warmer weather. Or, it could be that I messed up his system when I didn’t give him his rotated antibiotics on time (a few days off), causing more liquid stools. The increase in drinking water? Maybe it is all of the above. Despite the lack of weight gain Aidyn has stayed healthy, maintained his weight and has grown in height. In January, he did catch a nasty cold after going to a preschool vision and hearing test. There were little children in and out all morning. He had fevers for a couple days and we managed it all at home without a doctor’s visit. He bounced back fairly well. His sister, Alyssa, and I ended up with the same thing, but we didn't recover as nicely as Aidyn did. 

Aidyn had been dealing with low Vitamin D levels for a year, and low B12 levels the past 6 months. The week of Thanksgiving Aidyn went from supplementing with 2000 units to 8000 units of Vitamin D2 a day. Levels were rechecked in January, but it went down to 17 from 21. The GI referred Aidyn to an Endocrinologist and it was suggested we try getting in at 10 – 15 minutes of sun three to four times a week. Labs at the beginning of April showed Aidyn’s Vitamin D went down to 14! It seemed obvious to the doctor Aidyn was just not absorbing the supplement. He suggested we increase to 16000 units a day. Labs at the end of May revealed Aidyn’s level went up to 28, still a little low, but much better. I believe the increase in Vitamin D supplementation along with weekly sun helped. We switched from D2 to D3 about a month ago. The insurance doesn’t cover the prescribed Vitamin D2 and it is very pricey. We will see what the over the counter D3 will do for Aidyn. 

Apples are Aidyn's favorite, but too much isn't good.

As for Vitamin B12, the Boston team started Aidyn on a series of three B12 injections (January, February and then March). Labs in April showed he was no longer low and the GI here in Phoenix decided to stop the treatment. Children’s Hospital Boston, on the other hand, felt it would be better to have Aidyn on a maintenance dose because of the portion of intestines Aidyn lost. It turned out a maintenance dose should have been in place as he is low again. The local GI wants to see what Boston thinks would be a good regimen once we go to the CAIR appointment the end of June.

 

I am happy to annouce that Aidyn will be attending preschool this fall! He aged out of the Early Intervention program and was evaluated for developmental preschool since he was premature and still has speech issues. He qualified for the preschool program based on speech alone. His articulation is still an issue and it was agreed that a school setting would be best for him. I can't wait to see the progress he will make once among his peers. He is such a bright child and always has a lot to say. It will be wonderful for him to speak where we all can completely understand him, or with out Mommy translating for him. I know it will make him feel better when he is better understood. Let's hope his immune system will be able to handle all the icky colds and such that he will be exposed to.

Oh, one last thing, my in-laws, Mike and Eileen Stephany sold their home over 200 miles away to be closer to us! We now have family close by and the kids will be able to see their grandparents a whole lot more. It really is nice having family just minutes away. In the couple of months they have been here, I have been able to catch up on three years of medical, dental and vet appointments that have been long over due. We are so grateful they can be of help to watch the kids, especially Aidyn.

Timeline

As usual I am behind with updates, but will have one soon. In the meantime I have a snapshot of Aidyn life while he had a central line. I did this because a parent from a short bowel syndrome support group asked what the timeline looked like weaning off TPN. This is pretty detailed.


Aidyn was born at 34 weeks (4 lbs 12 oz) and got NEC at 3 days old.
* 3 days, 6 days old - 2 resections, jejunostomy, broviac, left with 15 - 18 cm small bowel and 50-75% of large bowel, no icv, no appendix
* 3 days old - TPN and Intralipids.
* 3 weeks old - started Lovenox because of a clot at tip of broviac
* 6 weeks old - went to Boston for eval, started intestinal rehab, switched to Omegaven (his liver was already bad by then), restarted feeds orally with breast milk (not put on transplant list to our surprise)
* 2 months old - Tpn reduced from 24 hr/day to 22 hr/day
* 3 months old - line replacement
* 5 months old - ostomy take down, successful reconnection, liver healing, started physical therapy 3 weeks after reconnection
* 6 months old - started Elecare (couldn't keep up with pumping)
* 7 months old - introduced solids, Cycled from 7 to 6 days/wk TPN/ 18 hr/day and hydration (saline) 1day/wk
* 8-10 months old ?? - Cycled from 6 to 5 days/wk TPN and 2 day/wk hydration 16 hr/day
* 9 months old - surgery to remove granulation from CVL site, 1st line infection/sepsis (Staphylococcus aureus)
* 11 months old - TPN/Omegaven/Saline reduced to 12 hr/day, 20 oz/day orally Elecare (20 al/oz)
* 13 months old - TPN/Omegaven down to 4 nights/wk, hydration(saline) 3 nights/wk, lots of solids and more oral fluids
* 15 months old - TPN/Omegaven down to 3 nights/wk, hydration 4 nights/wk, surgery for broviac replacement due to 8 month long granulation tissue problem, 2nd line infection/sepsis (staphylococcus aureus in new line!), hospitalized again for low creatinine levels most likely a reaction from Gentamicin and Unasyn combination, hospitalized a 3rd time in 3 weeks for another line infection (different bacteria)
* 18 months old - TPN/Omegaven the same, 2 nights hydration, 2 nights completely off, Elecare 30 cal/oz (from 27)
* 20 months old - blood in stool, allergy testing (allergic to wheat, cow's milk, beef), 4 nights off, 3 nights TPN/Omegaven, tested negative for cystic fibrosis but given pancreatic enzymes (Creon 6000) to absorb fat better
* 22 months old - TPN/Omegaven stopped, hydration as needed, peaches and bananas restricted (blood allergy test)
*23 months old - granulation around broviac again
*24 months old - Broviac removed!! 750 mls of Elecare a day. In addition, another 260 – 300 mls of fluids from ORS and non-dairy milks, Lovenox stopped

Aidyn was blessed enough to not have issues with vomiting, reflux or oral aversions. He also never did tube feedings, which is unusual for short bowel syndrome.

2011 Wrap Up

It's been six months since this blog has been updated, but there's more than six months of updates! I have decided to write about everything through the end of 2011 and continue with a separate blog entry that will start with the New Year. Here I go!


Since coming back from Boston, in June last summer, Aidyn has steadily been gaining weight. From June to December he gained two and a half pounds! That’s a little over half a pound a month! There were moments of ups and downs with weight, but overall, pretty good. Lab results from June’s CAIR appointment showed Aidyn’s vitamin D level to be low. He started supplementing with 2000 units/day of it in July. Since Aidyn reacted well to the use of Flagyl for bacterial overgrowth, he was cycled on it every other week instead of one week on 2 weeks off. I also continued to give probiotics.

It had not yet been a year since Aidyn had a speech evaluation, but I requested another one because of my growing concern with his lack of clear communication. So, he had one at the end of July. Three weeks later we got the results. He scored with a severe delay this time. The speech pathologist recommended speech therapy for a minimum of a year. Aidyn had no problem understanding us, or with his receptive communication, but he could not articulate sounds that he should have been able to make. Outside the norm he could make “g” and “d” sounds, but not the typical “b” and “m” sounds. My theory was since Aidyn was intubated early in life and also for six of his seven surgeries, his throat and tongue became overstimulated which made him mainly produce sounds from those areas. Trying to get him to make “ba ba ba” or “ma ma ma” sounds had always been difficult. When he said “bye” it come out “dye” and “Mama” would be “Nana.” He did his best to convey what he wanted to say by pointing or taking us to what he wanted. He frequently became frustrated at us for not understanding his jibberish. In August he started speech therapy once a week. The therapist has been doing all she can to help with lots of different games and oh, the always fun iPad. To help stimulate better sensations with his lips we blow bubbles, use straws for drinking and I even bought an electric toothbrush. There has been some progress since we started speech therapy as he will now mimic the “ba” and “ma” sounds when asked, but he still is trying to incorporate them with words. I am happy to say he is saying "mama" more and more now. One thing Aidyn has going for him is his mastery of tones and syllables in words. Given the context of the situation, you can figure out what he’s saying at least 50% of the time. He is talking in complete sentences and I finally realized he has been doing so for months now. He loves mimicking vehicle sounds and is good at it, for example he makes sounds that are distinguishable between a morotcycle versus a car.

First time in the play pool last summer.

His first trip to nearby Sedona. Well, second if you count being in utero.

In mid August we took our first, but short, real vacation since having Aidyn! We headed to California’s Sea World. We spent one full day at Sea World and the next day we played in the sand and water at a nearby beach where we stayed. It was a very fun and relaxing trip, especially because we didn't have to worry about a central line anymore.

Very tired after a day of Sea World.

The beach was a definite hit.

In September, the local Gastroenterologist ordered stool studies and suggested we have him scoped to evaluate for possible Eosinophilic Gastroenteritis if his weight was lower at next month’s visit. He weighed 23 lbs 5.6 oz, but was 24lbs 4 oz the week before. His frequency in stools increased and they were more loose than usual. I thought it could have been the combination of giving him coconut milk and the round of Flagyl he started. I did further reading on the milk and there’s a possible laxative effect with it. With my urging I stopped his Creon medication. It seemed to give him major discomfort to the point of being extremely irritable. 

Bad tummy day at the park.

At the end of October, Aidyn’s weight was 24 lbs 3.7 oz.  the doctor was very pleased with his overall weight gain since she saw him in September, especially after stopping the Creon. It’s possible that at the time Aidyn started having discomfort he was making the needed enzymes to break down fat, and the combination of his enzymes and Creon were causing a negative side effect. There were no recommended changes to his medications or diet, and the doctor felt he did not need to continue with support from Creon as the stool studies were negative for blood and inflammation.

We headed to Boston Nov 3rd. It was a good visit to the CAIR clinic. However, Aidyn wasn't in great spirits since we had a long plane ride the day before, and got up early to do labs before our appointment. Members of the Omegaven team eagerly popped in to take a quick look at Aidyn and they were very impressed. He looked visibly healthier in terms of growth and had a nice increase in his weight since the last CAIR visit in June. Dr. Puder wasn’t in clinic that day, but the fellow surgeon paged him from another part of the hospital since I really wanted for him to see Aidyn. It was a kind gesture and Dr. Puder was happy to come. Aidyn was still cranky but it didn’t stop Dr. Puder and I from having a good talk. We flew back to Arizona a few hours after clinic. Labs from clinic showed Aidyn’s vitamin D still low and B12 a little low. B12 was 153pg/mL (normal 190-778) and Vitamin D 18.6ng/mL (normal 30 – 80). The week of Thanksgiving I started giving Aidyn the full vitamin D dose of 8000 units a day. Labs would be rechecked again in January for both vitamins. 

Boston Children's Hospital grounds.

Children's Hospital Boston lobby.

Enjoying Thanksgiving dinner.

Staying hydrated with a popsicle made of Ultima Replenisher electrolyte drink.

In December, I started noticing that Aidyn wasn’t having any bowel movement for many hours after waking up. I suspected he was controlling his bowels, especially when not at home.  Consequently, he started having bowel movements after bedtime. At his December appointment, his GI said he was probably withholding, causing residual stool to come after his body was relaxed. His weight did not change much. We decided to temporaily put Aidyn on Periactin, a drug usually used for allergies. Its side effect is increased appetite. The doctor put him on a low dose and we hoped it would help him gain more weight. In two weeks Aidyn gained a pound, putting him at 25 lbs. 7 oz! What a difference! We decided to keep using the Periactin for a little while longer.I started him on a new probiotic and it seemed to work better than the Culturelle.  The night time bowel movements stopped and he was on his way to being potty trained.  

This wraps up 2011. I plan on updating about the start of 2012 soon! Here are more pictures to enjoy.

Before ....

...and after haircut, done by yours truly.
Despite everything, he has a nice head of hair. It's been cut four times!