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!

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.

Update

Today, Aidyn turned one month old!! A lot has happened over the past 4 weeks. During Aidyn’s second surgery, the surgeon took the end of his small intestine and gave him an ostomy. She also gave him a stoma for the end of his big colon.

Seven days old, after his second surgery.

The stoma is flush with his skin, at the end of the incision. The ostomy is on his left, with a bag over it to collect waste. Aidyn was weaned off all meds from surgery and the ventilator about a week and a half ago. He was started on feeds through a feeding tube in his nose on April 29th.

First he was given a 1/2 cc/hr of Pedialyte. He tolerated it well over 24 hours. Next, it was breast milk, but he dumped it all out into his bag. His feedings were stopped, but poor Aidyn was getting hungry. Finally, Elecare formula was given to him 2 days later, he dumped more than put in this time. On May 5th the doctors stopped his feeds. It was thought Aidyn’s small bowel may need to heal more before he can absorb anything. To help ease Aidyn’s hunger pangs, one of the surgeons suggested letting him have a little Pedialyte on his pacifier. It would keep Aidyn from having an oral aversion. More updates from the past month soon.