2-year update!

It's been a long time since our last update because Silas had been healthy for 2.5 years!! That's NO constant vomiting, no hospitalizations, no testing, IVs, medications, irrigations, or anything. It's been glorious. This past year we rested in knowing that Silas was healthy; we could make plans and actually follow through with them because he stayed healthy! A very generous donor from Terry's House (the hospitality house we stayed at for 5 weeks after he was born) gave us an amazing vacation package to Disneyland which we enjoyed together last September.

THEN, out of the blue one early October morning, Silas woke up vomiting. We managed it the best we could for a few days at home with the phone advise of his doctor (trying to avoid a hospitalization), but after nearly a week of little improvement and a very clear decline, an ER visit was imminent. He was admitted for 4 days to rehydrate him via IVs, allow "intestinal rest" (no food or drink), rectal irrigations 3x per day to wash out the infected intestine, and strong antibiotics to eradicate the infection named enterocolitis that had ransacked his little body for the first time in 2.5 years. Why was this happening? The best theory that was given to us was that he needed another botox injection, which made sense to us so we arranged to have one the very next day after he was released from the hospital.


HOWEVER, as soon as he ended his antibiotics that week, the enterocolitis returned. We were able to catch it before the vomiting set in and got him back on antibiotics for another two weeks. Once those two weeks ended, the infection returned for a third time! Again, we caught it early. This time, doc put him on a very high dose of antibiotics for 30 days to make sure it was GONE. And, we followed that course with the SIBO Specific Diet in order to better control the bacteria growth that were establishing itself in his gut, along with an inundation of probiotics.

This was really tough for Silas. The SIBO Specific Diet is very rigid at it's first phase, and then gradually allows more variety as he graduates to each subsequent phase. Here is the diet if you are interested to know. On Halloween, he could have no candy. No cake at Gram's 100th birthday party, no candy canes or other treats at Christmas. Silas LOVES sweets, however he very maturely accepted it because he knew it was worth it to avoid getting enterocolitis again. By the end of December we had finally weaned him off the rectal irrigations (praise the Lord), and he entered the 3rd and final phase of the SIBO Specific Diet which allowed him to have avocados, apples, figs, and dates. He could even eat a Larabar during his snack break at school!! Life was getting better and he could see the glimmer of light that soon he'd be off the diet.

Gram's 100th Birthday!
At least he could have a tangerine. 

THEN, out of the blue one late January morning, Silas started vomiting at school. This continued through the afternoon and he quickly became dehydrated. Jay was out of town and I needed someone to stay with the younger two boys overnight, so the Lord blessed us with an amazing last-minute babysitter as I whisked Silas away to the ER as fast as I safely could on a fresh highway of snow. His weak little voice from the backseat squeaked, "Mommy, will I have to get an IV? If I do can can we ask the nurse to use the magic spray again so it doesn't hurt so much? Will we have to sleep at the hospital tonight?"
I told him, "Honey I love you and I don't want to to have to get an IV, but you will probably have to get one to help you get better. And if you do, I will ask our nurse to look for the magic spray, and yes we will probably sleep there tonight. But I will be with you the whole time and God will be with both of us the whole time. He will protect you and heal you." I continued sharing with him as the Lord led me, and we prayed about all the things he was worried about as we drove along.

AFTER 2 hours of driving (including a handful of throw-up stops), we made it to the hospital only to be met with a line out the door to get in. Everyone was sick, coughing, vomiting... oye!! I threw a mask on each of us and huddled in a corner near a door where some fresh air could come in. If it weren't 35* outside I would have just taken him out there! After waiting for 2 hours, Silas was finally taken to a treatment room where he was assessed, IV'd and blood tested - with magic spray...YAY!  (like a champ might I add!), x-rayed (he actually enjoys x-rays because "they don't hurt at all and I always get lots of stickers!"), and later irrigated. Silas and the x-ray tech, John, were particularly fond of each other: "Thanks for taking my x-ray Mr. John, and thank you for all of the cool stickers! You are a very nice doctor!" John: "You're welcome Silas! You're a pretty special young man yourself!" When we returned from x-ray, the ER doc said would be admitted for dehydration (his bicarb was 11) and no food/drinks until a surgeon could evaluate him since his x-ray looked concerning for an intestinal blockage. The surgeon would be in the next morning, so we would be spending the night in the ER. By about 2am we finally concluded all the tests, assessments, exc..., so I pulled up a chair, curled up with my sweatshirt, and fell asleep for about an hour until his IV pump started beeping. After the nurse attended to his IV, I shifted around a bit and fell back to sleep. Around 4am the nurse brought me an extra gurney from the hallway to sleep in... praise the Lord.
We made friends with our ER nurses who came and went as the shifts changed. One named Linda in her early 50's is a traveling nurse from Texas who is temporarily stationed here. She rides a Harley across the country and takes jobs wherever she wants! She was a hoot and made us both laugh.

By 8am the surgeon came and discussed the plan with me, which was all typical for the treatment plan Silas usually needs: continued IV fluids and antibiotics, intestinal rest for 1 day, then allow clear fluids only for the next day, and if he tolerates all that he can go home in a couple days meanwhile continuing the rectal irrigations 3x per day. Once the doc finished going over the plan, our nurse started making arrangements for Silas' admission to the hospital, room assignment, exc... and I went on a mission to devour the entire cafeteria...okay I'm exaggerating. But really... I was starving after missing dinner and not wanting to eat in front of him all morning while we waited for the surgeon. Linda checked on him while I was gone so I felt I could escape for a few minutes.

Upon entering his new room, Cecelia - one of our favorite nurses from October - entered and gave us each a big hug! She remembered Silas because he always prayed when we did the rectal irrigation on our last visit, and she was excited to hold his hand and pray along with us again this time.
After the check-in process and assessments were completed, I took Silas to the children's playroom by his request. The fact that he felt like playing was a great sign to me that he was improving already. He even looked better from all those fluids. His vomiting had stopped and his skin looked full instead of sunken and also had good coloring. In the playroom, he started a pretend IV on me (there are all kinds of medical supplies for kids to play with), and colored a paper elf with scented markers while we visited with Julie - she runs the place and had done some play therapy with Silas a few years ago when all this traumatic stuff was really tough for him. After about an hour Silas felt tired so we went back to our room to nap (well, he napped and I escaped again to the cafeteria for a late lunch). Silas kept asking for food/drinks and it was so hard for me to tell him he's not allowed to have them bc it could cause him to throw up again. That helped him understand but he was still "so hungry!" Another good sign of improvement!

He was wondering why everyone always wants to listen to his belly.
Cecelia let him find out!

Silas giving me a pretend IV in the playroom.

Day 3 at the hospital brought new excitement: clear fluids! Juice, broth, jello, gaterade, water! I'm always surprised at the foods the hospital provides to sick patients - sugar, dyes, aspartame, artificial flavors, high fructose corn syrup. Normally I bring our own "clears" for him that are healthier, but his time I ran out in a hurry. Oh well, I figure once in a while is okay and he was particularly fond of the green jello anyway, lol. The winter XGames were on TV and he loved watching snowboarding and skiing after a couple more visits to the playroom. The surgeon evaluated him and deemed him ready to go home! PTL!! Our nurse, Lacey, got all his medical supplies and paperwork prepared quickly so we could make it all the way home before dark. After she took out his IV he burst into song, "I'm free!!!" She smiled and said he's her favorite.

Holding hands, we practically skipped out to the parking lot. Silas said, "Goodbye hospital! I don't need you anymore!" And off we went, driving home, talking about all God had done for him. And then he fell asleep the whole way home.

Sunrise over the Central Valley from his hospital room.
How refreshing to see the Lord's handiwork after a few days indoors.

Operating Room Champ!!

Yesterday Silas had his 5th and (hopefully) final Botox treatment to relax the tightened intestinal sphincter that has been giving him problems since he was 1.5 years old. Over the course of these treatments we have been so blessed with great anesthesiologists who allow us to hold Silas on our lap while they put him to sleep in the OR (it goes much smoother that way before and after the procedure). Becides, seeing his parents dress in a full suit for the OR is kind of exciting for him. He really has become brave about the whole thing and we are very proud of him for maturing in this way. He says that his favorite things about going to the hosptial are: getting to ride in the little wagon (instead of a wheel chair), and getting a popcycle when he wakes up in the recovery room. He also likes it when his surgeon tells him funny jokes that make him laugh:).
We won't schedule another Botox treatment in 4 months from now because it appears that his intestines have been trained to relax well enough. If he has a problem down the road, we can address it then. For now, he's doing great so we're gonna let him keep going strong:) His new surgeon has been so knowledgable and experienced with Silas' condition which has allowed Silas to receive the great medical care that he's been needing. Also, he doesn't need to be on a strict diet anymore since his intestines are finally functioning correctly!!
In April we welcomed Levi into our family and we have been so thankful that Silas has felt the best he has in his entire life, just in time for our new baby! He's had ZERO hospitalizations in over a year (a life-time record for him!), he can eat almost anything he wants, he doesn't need any medical interventions to help him go to the bathroom, and he is the healthiest he's been for the longest period of time yet! Once again, our Healer has graced us with His touch on Silas' life. To everyone who's been praying over the years - thank you for your commitment, care, and love!! Our faith had been made stronger from facing some tough times and we've "tasted and seen that the Lord is good" (Psalm 38:4).

OR visit in October

As of 10/23/15

The botox treatment in August was so successful we decided to continue doing rounds until his intestine is "trained" to not tighten up. Unfortunately, botox is not permanent and wears off after a couple of months. Silas' wore off 6 weeks after his first treatment, so we've had some minor problems with him not feeling well in the past couple of weeks. We are very relieved he could get treated today and he can start feeling well again! His next round of botox will be in January.

Pre-op cuddles with daddy are the best!

Nolan saying goodbye to Silas after a little game of ball together in our room.

They let mom in the OR!! It's a really big deal because they never allow that. We just asked (like we do every time), and this time they said YES!!

A little bit of chicken soup for recovery really perked him up again!

Gratutide in September

As of 9/25/15

There is SO much to be thankful for right now!

1) Silas has been feeling SO much better since the botox treatment! Life has been a breeze for us with absolutely NO assisting him to "go". What a relief, what a time-saver, what a joy to have him healthy.

2) Normally, traveling triggers Silas' intestinal troubles because he does "stool holding" while away from home. However, for the FIRST time ever, we have been "traveling" for 5 weeks now and Silas has not had any problems because of stool holding! What a relief. If he didn't have this botox treatment, he surely would have gotten sick and been hospitalized at some point during these 5 weeks of evacuation.

3) Normally, being away from mom and/or dad can trigger intestinal troubles - also because of stool holding. However, Jay and I were able to get away for 6 days in Hawaii to celebrate 10 years of marriage! And, Silas was FINE!!! What a blessing!

4) Our home at Hume Lake was protected miraculously, and no buildings were burned! We will return home in a couple of days :)

We might have to take Silas in to get more botox every 3 months or so, depending on how he is doing. Please join us in praying that he continues to thrive!

Thank you all for your love and care! 

At the Fresno Zoo; passing the time while waiting for the fire to clear up.

Refined by the Fire in August

As of 8/10/15

The second opinion from another surgeon last week was SO valuable. He wants to do a few tests on Silas (for you medical nerds: "manometry" and "ganglion cell biopsy" are the tests he'll have while under anesthesia), and he recommends an injection of... wait for it... BOTOX! Yes, it's true. Botox injected in his intestine might actually be the resolution to the problems Silas has faced over the past 2 years. It could help relax an over-active sphincter that might be the culprit for all the troubles (the manometry test will also tell us a few things).

Silas is still recovering from the repercussions of his stomach flu in early July. His energy is definitely back, but his appetite and "regularity" in stooling are far from regular which makes him feel nauseated and he acts irritable.

We are praying that the surgeon will have time to do this botox thing sooner rather than later so Silas can make better progress healing. Thanks for all the love and support!

As of 8/14/15

Thanks for praying! The surgeon was able to squeeze us in for this Monday 8/17 at 10am, however he is on call for emergencies that day, so if an emergency arrises it will take priority over Silas. Pray that doesn't happen!! Silas really needs this procedure sooner rather than later. Again, this is quick manometry test, ganglion cell biopsy, and botox injection into the intestine (scroll down to the last post in "How We Got Here" to find out more details). Should be 15 minutes total under anesthesia. Pray for protection of his brain from long term affects of anesthesia, and also for accurate test results and that the botox would help!

As of 8/20/15

I am always amazed at how God hears our prayers! There were no emergencies, so the surgeon was able to do the procedure as planned! Also, the botox injection went fine and he reacted to the anesthesia great. The cell biopsy showed normal ganglion cells, so no need for any surgeries - YAY!!!!! The botox takes a few days to be effective, so we are just seeing improvement today and yesterday, and let me say how wonderful it is so far. He really seems to be feeling better and "going" much more easily and more often, which means we don't have to "help" him in any way or give him medications anymore. Pray that it only continues to improve and there are no problems in the future. Hopefully this will be a last step in solving his problems and he can be on the road to normalcy.

PS: our family was evacuated from our home at Hume Lake right after Silas' procedure because of the nearing of the "Rough Fire". We are staying with Jenine's parents in Orange County until we are allowed to return home again.

Photo taken by a Hume staff member while on a plane on Thursday 8/20 at 4pm.
The billows of smoke dwarf Hume Lake, which is immediately to the left of the fire.
We have been praying for the wind to blow East to keep the fire away and allow
firefighters to create more protective barriers.

A Joyful July

The low FODMAP diet really revolutionized our lives. Silas took ZERO antibiotics for one year and had only a couple of minor/brief hospital stays for stool-holding (usually revolved around traveling away from home). Then in late June 2015 he got a legitimate intestinal virus and was in the hospital for 9 days, and tested positive for SIBO for the first in over one year, so he got back on the antibiotics and strict diet again, but that's not so bad compared to 2014! He has felt better overall, and well enough to play and go on adventures, but still wasn't his old self in some ways for about 1 month.

7/15
Daytrip to the Kings River for Jay's birthday! 

On a follow up visit last week with his pediatrician, we were advised to gain a second opinion from another surgeon because it's possible that the Hirschprung's disease is not completely gone and this is why Silas is so sensitive to stool-holding and intestinal viruses. We have an appointment to see a different surgeon on August 6th.

Would you please pray with us for God's leadership over this situation. The last thing we want him to endure is another surgery. Pray that there might be another way to help him. Thank you! 

What Happened in 2013/2014

As of 1/29/13

On Monday, 1/28/13 Silas had another contrast x-ray test in the hospital. It was a fairly quick and routine exam to find out the success of the previous surgery back in December. We had a great team in the room, and the data was gathered rather quickly which allowed a lower-stress environment compared to previous experiences during the same test. The surgeon said he's happy with what he saw and is moving us towards final surgery. We are heading out of town to Orange County for almost two weeks which means that Silas will go quite a while without being dilated. We will see his surgeon after the trip for another dilation and if Silas feels typical and hasn't changed much in size, we should start making arrangements for surgery as soon as possible. 

All three of us are spent and done in many different ways. It's an on-going struggle to balance the amazing blessing of such an amazing kid and all the fun that comes with him against the challenges and difficult stuff we've gone through. Its a taxing and fulfilling place to be, and it has stretched who we are. We are looking forward to some more "normal" time with our li'l guy so we can just be a family and let the last year become more of a memory and less of an ongoing reality. 

His confidence is growing and he waves all the time.

As of 2/17/13
The surgeon was pleased with Silas' colon at the most recent visit this past week. Despite going nearly 3 weeks without being dilated his colon didn't tighten up very much, which is a good sign. Doc wants to dilate him again in 2 weeks just to be "safe" before scheduling a surgery to reverse the ileostomy.

On another note, Silas just turned one! We had a wonderful time celebrating while we were in Orange County and we're looking forward to celebrating again with our Hume friends after his surgery. He's learning new things everyday and we're enjoying watching grow. Some of his most recent new tricks: dancing, taking a few steps, and sign language.

1st Birthday party, enjoying a s'mores cupcake.

As of 2/19/13
After a brief phone conversation with the Dr, he agreed to tentatively schedule the final surgery asap which would be next Wednesday! Its tentative based on how Silas' colon feels during his dilation the day before. If it doesn't feel right, we may need to postpone until he does feel correct which could be another month or more, we never know. Next Tuesday is a turning point to go down one of two roads.

We're prayerful that:
1- Silas is completely healed and ready for surgery
2- The hospital will have availability
3- We will be rested and have clear minds for this next step.

As of 2/26/13

Today's doctor appointment was disappointing. The surgeon noticed some tightening in Silas' colon in the area where December's surgery was, which is enough reason for him to want to do more testing before thinking about reversing the ileostomy. Tomorrow, with Silas under anesthesia, the surgeon will run some tests on his colon to get a better idea of what's going on inside there. If he sees good things, he may just do the surgery right then and there - that would be nice, but we're not holding our breath for that (though we are packing in case it does happen since that would mean staying in the hospital for one week). Thank you for keeping our family in prayer tomorrow!


As of 2/28/13
On Wednesday 2/27 Silas had a colonoscopy procedure in the Operating Room to see how much his colon has healed since December's surgery. If it looked healed, the surgeon would do surgery to reverse the ileostomy right then and there. If it didn't look healed, the surgeon would not operate - and that's what happened. Apparently part of Silas' colon has some "granulation" inside of it - inflammation/blood vessels trying to heal the area after surgery. The granulation grows inside the colon and can act as a blockage and if Silas were to try to go to the bathroom, he'd feel constipated because of it. The plan is to flatten out the granulation by having Silas dilated every week with a larger sized metal rod for 4-8 weeks until it flattens out and then he can have the ileostomy reversed.

Also, the surgeon took a few cell samples from that area and the biopsy results will come in next week (just another type of test to make sure we're not missing anything).

Silas is feeling better now that he can eat again. He had to fast Monday-Wednesday in case he ended up having surgery. He lost almost 2 lbs and was fussy by Wednesday, no surprise there. The medical staff was very accommodating and allowed Jenine to nurse him immediately after he woke from anesthesia. We gave him solids a bit later and he couldn't get enough! He gained his 2 lbs back and is grateful for every meal ;) He's a bit uncomfortable from being dilated while under anesthesia (doc used a very large sized rod that time), as well as some skin irritations around the incision from December, and a new tooth coming in so we're keeping him on pain meds until those things settle down.

We felt covered by God that day. Even though things didn't pan out the way we hoped, we sensed his peace that He was doing what was best for Silas. He gave the surgeon confidence in what he saw, He gave us amazing medical staff before, during, and after the procedure, and we just knew He didn't forget about us. Thank you, thank you, thank you for continually lifting up our son. We are confident his resilience is a result of your prayers.

As of 3/7/13

Apparently the "granulation" material in Silas' large intestine can be removed faster than trying to flatten it out with the dilator rods each week. The doc can "cauterize" it (burn it until it fries and falls off) - a much quicker route to getting that area healed enough so that Silas can have a BM with no constipation after his intestines are reconnected.

Our main concern is the amount of anesthesia Silas has been exposed to in his first year of life. This will be his 10th or so time going under, and studies have shown that excessive amounts of anesthesia in young children could result in negative, long-term effects on the learning and behavioral areas of the brain. We do not want this to happen to Silas and are pleading with God to protect every brain cell from any damage. We always ask the medical team to use the minimum amount of anesthesia necessary for the minimum amount of time, and we pray that request is always honored. Please pray for Silas brain to be protected tomorrow and always.

Thank you!


As of 3/8/13
Thank you for praying for Silas today in his OR visit today. The surgeon didn't end up doing anything to him because the scar tissue just "disappeared"! He said his colon (aka large intestine) looks healed enough to reconnect his intestines - maybe as soon as next week. We're waiting for him to meet with the other surgeons to discuss the situation before we hear a final decision. Silas came in and out of anesthesia just fine besides being sore in his behind from being probed with a scope. Thank you, thank you, thank you for your prayers!! 

As of 3/12/13

The only thing holding Silas back from having surgery was the scar tissue inside his large intestine at the previous surgery site. Since that scar tissue miraculously disappeared by the time the Doctor had an exhaustive look inside last week, Silas is now ready and healed correctly to have that final surgery we've all been waiting a year for.

Surgery is schedule for tomorrow, 3/13/13, around 12 or 1pm. We'll stay in the hospital with him for his week-long recovery. He'll be on IV fluids for pain management and nutrition for the first few days, and then we can feed him gradually as his appetite comes around. After that, he will be closely watched to make sure his intestines are functioning correctly and that he is able to have a normal bowel movement.

We would love prayer for:

1.) Surgery - no complications, minimal blood loss, accuracy/precision of the surgeon's hands and mind, minimal time on anesthesia.

2.) Recovery - no infections, successful pain management, correctly functioning intestines, rest for Silas and us, minimal nausea and good appetite for Silas, attentive/caring nurses.

Thank you for every prayer. We know He hears us!

As of 3/13/13

God has blessed us in many ways today:

1.) Silas had a successful surgery and his ileostomy was reversed - yay!!

2.) There were no complications, minimal blood loss, short time on anesthesia, smooth surgery.

3.) Pain is being managed very well so far.

4.) We've had wonderful hospital staff who have been very attentive and caring to all of us.

5.) Silas has been resting mostly peacefully since he woke up from anesthesia, and we feel like we'll be able to get some rest tonight too;)

It's only the first night and anything can happen at any time, but for now we're soaking in the peace and joy that God has covered us with and we'll enjoy every moment of it ;)

Thank you for all your prayers!

As of 3/19/13
The blessings continue to flow. The morning after surgery, Silas had his first "bm" showing that his intestines were already functioning after surgery (often, the intestines shut down for a couple days after surgery), and we were pleasantly surprised that things were already moving. The doctor allowed Jenine to nurse Silas all day and he ate eagerly. He was alert and happy all day on Thursday; he hardly seemed to be in pain. Any fussing was because he was hungry. That night the doctor allowed him to have solid foods since he tolerated the milk so well. By Friday morning, just shy of 2 days post-surgery, the doctor discharged him since he was doing so well. We couldn't believe we were already headed home!

Silas was glad to see his home again and we were glad to see him doing so well. Our only challenge has been the skin on his diaper area. The doctor told us to expect bad rashes since his skin wasn't used to having poop on it, but this rash has been relentless! The reason it's so bad is that he has a bm every 30-60 minutes and his skin is constantly being irritated. He goes so frequently because his large intestine hasn't been used in such a long time that it is "learning" how to work again. After 1-2 months he should go less frequently. Until then, we'll continue the frequent diaper changes, caking on the rash cream, epsom salt baths, and distractions. He's been waking up each night with discomfort so Jay and I have been a little zombie-like the past few days. We traded the annoying bags for the irritating rash, but it's a welcomed change. We're so thankful that our little boy is all reconnected and that it actually works!

Thank you for all your prayers this past year. They truly have been our sustenance through the ups and downs we've faced and it's been a joy to share our praises with you. How awesome it is that we've seen the Lord at work in Silas in many ways this year. We pray that would continue throughout his life in many different ways. 

Our God is Healer!

Update:

Things were going pretty smoothly after his 5th surgery in March 2013 except for some major diaper rash problems that never resolved completely until he was potty trained. We welcomed Nolan into our family in September 2013 and life just got really busy with two young kids.

Things started to get rough for Silas in early November 2013 when he started some severe vomiting episodes and was hospitalized every 2-6 weeks until June 2014 for dehydration. The cause was unexplained but he did test positive for small intestinal bacterial overgrowth (SIBO) and was on antibiotics almost constantly because of it. The doctors told us he might have to always be on antibiotics like some of their other patients are. We prayed for a resolution and God led us to siboinfo.com, which completely revolutionized his health. Not only did he not need antibiotics anymore, but the vomiting episodes almost vanished (except for a couple around the holidays when we traveled, and he was later diagnosed with the common behavioral trait of "stool holding" which triggered the vomiting and dehydration again). So, we stopped traveling and he was fine! Although we did take a family trip to Portland, Oregon in December 2014 to visit the SIBO "guru" who's research and education has allowed us to revolutionize Silas' health over the past year.

December 2014
Our first family plane ride was fun!

As an established patient of his, Silas can now be treated by this expert over the long distance thanks to modern technology, which has really been a blessing to our whole family. We spent the year weaning him from a very strict diet the first few months, and gradually reintroducing certain foods over periods of weeks. He handled them fine and we enjoyed having more variety again, and also welcomed more normalcy in our family life as his health stabilized.