Wednesday, January 26, 2011

Gardening in Exile

That gets us to the end of what’s been going on with the kids the last few years.  Believe it or not, I shortened everything quite a bit.  If you’ve been reading, you can tell there have been many ups and downs along the way.  What are we supposed to do during the “down” spots in our lives?

A while back, God brought some verses to my mind.  They were from Jeremiah 29.  At this point, you may already be reciting verse 11, but that wasn’t it.  Verse 11 is the one most often quoted from this chapter, “’For I know the plans I have for you,’  declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

The verses God reminded me of were earlier in the chapter:

 4 This is what the LORD Almighty, the God of Israel, says to all those I carried into exile from Jerusalem to Babylon: 5 "Build houses and settle down; plant gardens and eat what they produce. 6 Marry and have sons and daughters; find wives for your sons and give your daughters in marriage, so that they too may have sons and daughters. Increase in number there; do not decrease. 7 Also, seek the peace and prosperity of the city to which I have carried you into exile. Pray to the LORD for it, because if it prospers, you too will prosper."

You may have noticed that the Israelites were in exile at this point.  Later God tells them that they will be there for 70 years (verse 10).  It would have been so easy for them to not embrace their current situation.  They could have tried to just coast by the next 70 years as they waited on God to deliver them.  You know, the “I’ll do it, but I don’t have to be happy about it” approach.  But that is exactly the opposite of what He told them to do.  Did you notice that?  He instructed them to build houses, plant gardens, and marry.  In verse 6 He directly tells them, “Increase…do not decrease.”

I hope you will stop a moment to take this in.  It is so powerful.  Yes, God had wonderful plans for them (verse 11), but before that came to fruition, they had to endure 70 years in exile – and not simply endure it but find a way to thrive there.

When we are faced with challenging circumstances, we have a choice to make.  We can run for the hills, or we can face the situation and keep moving forward in God’s strength.  Proverbs 24:16 says, “For though a righteous man falls seven times, he rises again, but the wicked are brought down by calamity” (NIV).  I believe this is the key to how we do it.  This life will often knock us down.  Being knocked down is not always our fault, but what we do from that point is our decision to make.  Some choose to flee difficulty.  Even if they don’t physically leave, they check out emotionally and just try to get by.  That is not increasing!

Before the difficulties come, we have to make a decision that no matter what, we will continue to follow God and serve Him regardless of the circumstances.  That no matter how many times we get knocked down, we will get up and keep moving forward.  And with each new struggle we face, we again commit, “Yes, Lord, I will trust You even in this.”

Then, at the appointed time, we will suddenly be free to enjoy the wonderful plans God has for us.  But first, we must learn to garden in exile.


Tuesday, January 25, 2011

Silas Today

Dr. Weinstein is in Gainesville, FL – about nine hours from here.  We loaded up the van and drove all the way there on Sunday for our appointment on Monday.  There are many different types of GSD.  With a history of fevers and low uric acids, Dr. W wanted to test for type 1b.  The one thing that didn’t fit was that with this type, Silas should have liver enlargement – which he didn’t.  But, by the time the appointment was over, I was very encouraged, and thought we might have an answer.  Dr. Weinstein is a very nice man and tries very hard to make the kids have fun while they’re there.

However, several weeks later, we heard back from the DNA test, and it was not Type 1b.  Regardless, limiting the sugars in Silas’ diet was working, and I continued to focus on that.  Dr. W had suggested we look into Hereditary Fructose Intolerance (HFI).  GI #2 took blood, and we sent it to Boston University.  They have a DNA test for HFI that catches about 75-85% of the cases, but it was negative.  We found out that Baylor University has a test that looks at the entire segment, so we did a second test with their lab.  It was also normal.

In the fall of 2010, the kids got sick with the flu.  Silas wasn’t eating well and became very lethargic.  I checked his blood sugar.  It was 52, and it stayed in the 50’s for about four days.  After a few days, I remembered that Dr. W had given me a meter that checks for ketones.  It was 3.2 – very high.

Around this time, we had another visit with Dr. I (immunology).  Since I had removed sugars from Silas’ diet, he was not getting those high fevers every month.  Dr. I said that if the fevers were gone, we didn’t need to see him any more.  He said that in the next 5-10 years, we should be able to get a full DNA sequencing done fairly inexpensively, and that may be the only way for us to find the source of the problem.  This was very disappointing, but it lead me to call Dr. W again.  I let him know that we’d looked into HFI like he’d suggested, and the tests were normal.  I also told him about Silas getting sick and the problems we had with his blood sugars and ketones.  Dr. W said his ketones should not be that high and wanted us to schedule another visit at his office – this time an overnight visit with 24 hour blood sugar monitoring.  I am also supposed to page him if Silas’ ketones go over 1.0. 

And that is where we are now; we are scheduled to see Dr. W again in March.

Here’s a summary of some of the things we know at this time:

Note:  This list only focuses only on the syptoms that could relate to GSD.

·         Silas has improved greatly on a low/no sugar diet – with no milk sugars, fruit sugars, table sugar, etc.  So far, he can’t even tolerate any alternative sugars, such as sorbitol, Splenda, aspartame, etc.  He eats protein and complex carbs almost exclusively.
·         If he eats sugars, he has recurring fevers, abdominal pains, gas, skin problems, congestion and increasing irritability.
·         He can go about 12 hours without eating.  Sometime after that, his blood sugars start to fall.
·         Although it appears he can go 12 hours without his sugars falling, he has to eat at least every 3-4 hours or he becomes increasingly irritable.
·         Besides the lows, he has had spikes in his blood sugar.
·         His ketones have been high on several occasions.
·         His uric acid levels are too low.  The first was 0.9; since working on his diet, they have been 1.2, 1.7. and 1.4.  Normal range starts at 2.2.
·         His triglycerides are also abnormally low.  One reading was 39 – and he’d just eaten.
·         Several times, I’ve taken Silas’ blood sugar and ketone levels while he was having one of those terrible screaming spells.  They have been normal.
·         When he’s doing well, Silas sleeps until at least 6:00.  When he’s “off,” he has a hard time falling asleep and wakes up at 5/5:30.
·         Silas continues to take Polyethylene Glycol (Myralax) and Colazol/Balsalazide Disodium (the anti-inflammatory).  He also takes Singulair.  He takes ½ of an adult tablet because all of the “kid” forms contain sugars.
·         I can’t give him pain medicines (or other over-the-counter medicines) because the sugars in them trigger a reaction.
·         He continues to have swelling around his eyes pretty much every morning.  It generally gets a little better after he gets up, although they are almost always puffy.
o   Last summer, we found out that he cannot drink most bottled water.  He was having terrible abdominal pains and his facial swelling got worse.  I have read that the minerals they put in bottled water can be hard on the kidneys.  That reaction along with the eye swelling and low uric acid levels makes me wonder if his renal system/kidneys are affected.

Silas’ doctors now seem to be in agreement that it is most likely a metabolic problem.  They are just not sure if we will be able to figure out exactly which one.  GI #2 recently said it could be something that hasn’t even been discovered yet.  I can only hope Dr. W. is able to help us.

“I am still confident of this:  I will see the goodness of the Lord in the land of the living.”  Psalm 27:13


Monday, January 24, 2011

Extraordinary Measures

At one of our first visits with Dr. I (the immunologist), he brought up the possibility of this being a metabolic problem.  Since our visit with the genetics specialist a few years back, I’d not done much research in that area, but his comments got me Googling once again, which lead to my first real break-through. 

Metabolic disorders can be divided into different groups – some involve proteins (like PKU), others are related to sugars, some to fats, and so on.  I gathered all of the foods Silas was eating and started looking at the Nutritional Information.  I had never realized it until that point, but everything that bothered Silas the most (vomiting, high fevers, etc.) was high in sugar (20-30 grams or more).  The things that gave him moderate reactions were a little lower in sugar (10 grams or less), and the things that he tolerated best all had little to no sugar.  For the first time, I had something to work with.

The Glycogen Storage Diseases (GSD) particularly caught my attention, and one name that kept popping up was Dr. Weinstein at the University of Florida.  He is an endocrinologist who performs GSD research while also seeing patients.  From what I understand, he has the largest following of GSD patients in the United States.  I decided to email the coordinator at his office and see if she could give me any kind of diet information (without really giving her any specific information about Silas).  I just thought they might have some general information on avoiding sugars that might be helpful.

I didn’t hear from her for a while, and had decided it was a dead end.  But a few weeks later, she sent an email apologizing that my email had gotten overlooked and saying they would get back with me.  Not long after that, I had a message on my answering machine.  Dr. Weinstein himself had given me a call!  I emailed him some information about Silas and eagerly waited to hear back from him.

That same weekend, Extraordinary Measures was coming out at the movie theater.  We had planned to see it, since it is about a child with Pompe Disease (GSD Type 2).  Pompe is one of the worst GSDs, and was not the one we thought Silas might have, but we definitely wanted to see the movie.  I had my phone on vibrate in my pocket, just in case.

Shortly after the movie started, my phone began to vibrate.  It was Dr. Weinstein!  I ran out of the theater and into the hallway.  I’m sure he wondered by I was out of breath by the time I answered the phone.  We talked for a while, and he said he would like to see Silas at his office.  I was again feeling hopeful.  A doctor we’d never seen had called us to find out more about Silas.  He is considered by many to be the best GSD doctor in the country, and he just happened to call while we were watching the newly-released movie about GSD.


Saturday, January 22, 2011

New Doctors

You can probably tell by now that we’ve had more than our fair share of “not so good” doctors.  (Can you tell I’m trying really hard to be nice?)  At this point, I knew that Ped #3 just wasn’t working.  While he was nice, every time we went to see him, he didn’t remember what was going on with the kids, and I would have to start at the beginning each time and try to spark his memory.  It was getting old.  Besides this, when he wasn’t there, we had to see one of the other doctors in the practice, and some of them I just couldn’t stand.  (Like the one who insisted Silas was throwing tantrums just before he ended up in the hospital.)

GI #2 understands us better than most and has given me some really good referrals.  One of the first was to an immunologist since Silas was having these high fevers at least once a month.  I’ll call him Dr. I.  I have to give him credit.  He ran a lot of tests.  He tested Silas for several of the periodic fever syndromes - including Hyper IgD and Familial Mediterranean Fever Syndrome.  He redid allergy testing and confirmed that nothing was showing up.  He did a renal ultrasound and took blood often.  From our visits with Dr. I, we discovered that Silas has very low uric acid levels.  Because of this, he tested for Disorders of Purine Metabolism, which came back normal.  We also know that the markers for inflammation fluctuate often.  However, Silas’ ANA panel (related to lupus and other autoimmune problems) was normal.

When I decided it was time to find a new (and hopefully final) pediatrician, I asked GI #2 for his opinion.  So, in December 2009, I took his advice and moved both kids to Ped #4.  It’s going well so far.  She at least remembers who we are each time we come, and I believe we’ve finally found the place we need to be.

At some point, I started taking pictures if Silas’ reactions so the doctors could have some visuals.  Here you can see one of the times his whole face was swollen.

Here are his eyes when they’re looking good.

Here are his eyes when they’re swollen (which is often).

Another good thing about Dr. I was that he got me looking into metabolic disorders again...


Friday, January 21, 2011

The Aftermath & Symptoms

We left the hospital with Silas eating during the day and running formula through the NG tube at night.  The NG tube stayed in a couple weeks, and then we were left with just regular food.  Again I was hopeful.  Maybe Silas’ colon was the problem all along, and maybe with the Myralax and anti-inflammatory medicine everything would be fine.  But, my hopes would again be dashed.  It was one of the many times when I felt my life verse should be Proverbs 13:12, “Hope deferred makes the heart sick.”

I again began the difficult process of determining which foods were bothering Silas the most – this time without formula to fall back on.  GI #2 did another marker study a couple months later.  With the new medications, everything was at least moving through his colon now.  However, I soon discovered that anything that contained fructose was really bothering him.  The diaper area (front and back) would become red and the skin would start to peel, his colon would stop moving again (2-3 days), and the screaming would get worse.  I shared this with GI #2.  He did a hydrogen breath test to check for fructose malabsorption.  It was normal.  GI #2 ran several other tests (including a sweat test for cystic fibrosis), but couldn’t find the source of the problem.

Silas was still in pain often and having those terrible screaming spells.  The good thing was that his worst times of day were generally first thing in the morning and right after nap time.  I say it was good because once we got him going in the mornings, we could usually get out and do a few things before nap time.  After nap was generally not a good time, so it was difficult to plan much in the evenings because we never knew if we’d be able to get him out the door.  We were also in a bad cycle of him trying to eat and it making him sick, which would make him not be able to eat for several days, and once he felt better, he would want to eat again, and the whole cycle started over.

Here’s a list of symptoms that I made for one of his doctors during this time:

·         Abdominal pains – mild to severe, usually daily
·         Gas
·         Lethargy
·         Sleep disturbances
o   When he’s not feeling well, he has trouble falling asleep and sleeps in a little ball, with his knees drawn in like he’s hurting, even in his sleep.
·         Swelling in face – around eyes, cheeks, and/or lips
·         Something goes on in his mouth.  He will complain that it hurts and feel around it with his tongue all day.  Not sure if it’s a sore or swelling.
·         Chronic runny nose and/or cough
·         Fevers that can become very high.  Have gone up to 105.8.  As an infant, usually 103-104.  Now usually 101-102.
·         Vomiting
·         Constipation and/or diarrhea
·         Rashes – on face (red cheeks); general dry, rough rash on back/stomach
·         “Private parts” turn red and hurt.  Skin sometimes becomes raw and peels. (Usually after he’s eaten fruit)
·         Red and irritated around rectum.
·         Won’t eat
·         Sensitive to light and complains about eyes
·         Changes in temperament – When well, he is very happy and content.  As he gets worse, he becomes more and more irritable.
·         Unable to focus on tasks
·         Periodic spells of crying/screaming (like someone is stabbing him to death).  Starts at 10-15 minutes, goes up to 30 minutes, maybe an hour if he’s really bad.  Does not want to be touched.  Must leave him alone until spell is over.  Then, he’s exhausted and just wants to sit with you for a while.
·         Something happens with his hands and feet – especially during the screaming spells.  Rubs them like something is wrong – though I’ve not seen a rash.  I have to put him in socks or footed pajamas because he will rub the skin off his feet and leave raw, bleeding areas.

I refused to accept the idea that there was nothing that could be done for him.  Over and over, I had gotten rid of every symptom just by putting Silas on nothing but formula.  I was determined to get to the bottom of this.

Here’s a picture of Silas the day we took out the NG tube.  We went to the fair later that day.  He had fun for a while, but the movement of the rides ended up being too much for him.  You can see where he had a rash (right side) from the tape the held the NG tube in.  It took a long time to get rid of it.  I think the look on his face says it all.  J


Thursday, January 20, 2011

Mr. David

There were many who visited or called to check on Silas while he was in the hospital.  Writing about it made me think of one person in particular.  David worked with Criss, and they had become friends.  David dropped by the hospital several times, and he was always looking for ways to help.  Silas loved for us to pull him around the hospital in the little red wagons they provide.  It wasn’t easy because it took at least two people - one to carry Silas or pull him in the wagon, and another to pull the stand with the IV fluid.  David would always jump in and help.

One day while he was there, Silas had one of those terrible screaming spells.  David disappeared for a little while and returned with several stuffed animals from the gift shop.  It meant a lot to Criss that he was there.

Last year Criss & David both won a sales competition at work, and the four of us cruised to Cozumel together.  Just after we returned, David was diagnosed with lymphoma and passed away a few short months later, leaving his wife with three small boys.

We had told the kids that Mr. David was sick, and they asked about him often.  We didn’t take the kids to the funeral, but we did talk to them about Mr. David going to heaven to be with Jesus.  We shared with the kids about what a wonderful place heaven is and how no one is sick or in pain.  We talked about how Silas’ tummy wouldn’t hurt any more in heaven.  In a moment of inspiration (I thought so anyway), Criss told Silas about the banquet that we would have there one day, and told him that he’d be able to eat whatever he wanted.  Silas was very excited about that one.  Several days after David passed, Silas stopped Criss and asked, “Is Mr. David up there eating all that food?”

“Blessed are those who are invited to the marriage supper of the Lamb.”  Revelation 19:9

 “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore…”  Revelation 21:4


Wednesday, January 19, 2011

The Hospital

One of the reasons that Silas’ doctors were never very concerned was because he was still gaining weight.  Each visit, I would recount the issues he was having, and every time they would say, “Well he’s gaining weight.”  Let me tell you…there’s a WHOLE lot more to a child’s health than their weight.  In the 10 minutes they might see Silas each visit, they couldn’t see what I was seeing.  To them, he looked like an average little boy.  So often, I wanted to drop him off on their doorstep and say “Keep him for a week and see if you still think he’s fine.”

After the ordeal with the bottles, I had to start feeding Silas regular foods.  For the first few days, there were no major problems.  But within a few weeks, I had a real mess.  If I’d had a way to get some formula in him, I could have fixed it like always.  The Good Start Soy had worked well for a long time.  Earlier that year we’d swapped him to EleCare.  (If any of you ever end up buying EleCare, I saved a lot of money buying it off ebay.)

Monday, August 11, I called the GI doctor and told them I had to come in immediately.  Silas was so lethargic and he was starting to spike one of those crazy fevers.  GI #1 wasn’t available that day, so we saw GI #2, a doctor in the same practice.  I tried to tell him all that had happened, and he was concerned enough to run several tests and have us come back in two days (on Wednesday).  Sometime between Tuesday night and Wednesday morning, Silas started screaming, but this time, he didn’t stop.  I was afraid to take him straight to the ER because I knew if they just started putting things in him, they could mess him up more than they helped.  We drove to the GI doctor’s office and sat outside the door, waiting for them to open.

I had tried to no avail to tell them about these screaming spells.  When GI #2 saw it, he said, “You have to go to the hospital.”  I was very worried about Silas, but I was also hopeful that they were finally seeing for themselves how much pain Silas was in, and maybe now they would find the problem.

GI #1 & #2 took turns at the hospital.  The first week #2 was making the hospital visits.  He sent us with papers telling them what to run when we got there.  A CT scan showed that Silas had an ileus.  His colon had just quit moving, and he was impacted.  I had asked #1 months before if we needed to look at Silas’ colon.  He’d told us no, all of Silas’ problems were upper GI.  He was obviously wrong.  They put in an IV and an NG tube.  By now, Silas had completely quit eating, so the NG tube let us get some formula back into him.  They ran Myralax through the NG tube and did enemas until they finally cleared out his colon.

This got rid of the non-stop screaming, but it did nothing for the other screaming spells he’ had for so long.  They were still coming several times a day, and any time they put something in him – like dyes for a test, etc., the spells got worse.  So much of our hospital visit he was either screaming or knocked out from pain medicine.  The one thing that he enjoyed was being pulled around the hospital in a wagon.  So, we walked…and we walked…and we walked…and we walked.  Sometimes it was enough to keep his mind off of everything, and other times, we would have to get him back to the room and hold him down until it was over.  At home we could leave him alone until it stopped (which he preferred).  In the hospital, he had all these tubes hooked to him.  When he started screaming, he would start pulling at everything and rip it all out if we weren’t holding him down.

And rip everything out he did…so many times.  If he wasn’t having one of these spells, he left everything alone.  But if one of them started and we didn’t grab him in time, everything went flying.  I can’t even remember the number of times they had to put the NG tube back in.  Oh, how he hated that.  He wasn’t even three yet, but it took three adults just to hold him down every time, and one more to actually put in the tube.

That first week #2 ordered a marker study.  We hid the tiny plastic marker inside some raisins, and he ate them.  It took several days for the markers to get to the hospital.  By then it was #1’s turn.  We took our daily trip to x-ray each day to see what the markers were doing.  #1 kept saying that they were moving, and everything looked fine.  But I was concerned that Silas was still not having bowel movements.  They were giving him formula through the NG tube, and he should have been going by that point.  #1 wasn’t concerned.

#1 also wanted to put Silas on medicine to make him hungry.  This really annoyed me.  I understand this can help some kids.  For Silas, wanting to eat was not the problem.  He LOVED to eat.  The problem was that everything he ate made him sick.  To me, it was absolute torture to give him medicine to make him MORE hungry when he WANTED to eat.  I wouldn’t let the nurse give it to him.

That hospital stay was a real low point.  Here we were with all of these doctors and nurses and still no one knew how to help Silas.  There was one night that was especially bad.  Everyone else on the hall was trying to sleep, but we couldn’t get Silas to stop screaming.  The pain medicine that usually knocked him out for a while wasn’t even helping.  It was the middle of the night, and all Criss and I could do was walk the dark hallways and try to calm him down.  I really wondered if he was going to make it that night.

Finally, we started yet another week, and it was time for #2 to return.  Good thing he did.  They were trying to do a 2nd endoscopy and his 1st colonoscopy.  They ran Myralax through his NG tube all night, but nothing happened.  Silas’ colon was still not moving, and he was completely impacted again!  I had tried to tell #1 all week, but he wouldn’t listen.  #2 said the markers had moved only a few inches in a week!!!  Everything was stuck in Silas’ transverse colon.  #2 said he’s never had a child on an overnight Myralax drip who still had not gone to the bathroom by the next morning.  And, my, how Silas was hurting again.  He was pumped full of all this medicine, and it couldn’t get out.  #2 ordered the nurses to run enemas until Silas was flushed out again.  They finally cleared him out just in time for the colonoscopy.

I can’t remember all the things they tested for while we were there.  One day, they took a biopsy to test for Herschsprung’s Disease.  That wasn’t it.  They took blood.  Various specialists would visit.  No one had answers.  The endoscopy was clear, signs of reflux were all gone.  From the colonoscopy, #2 said Silas’ colon was loose and bled easily.  When the biopsies returned several weeks later, every sample they had showed inflammation.  However, #2 didn’t think it was Crohn’s.  Blood work had also shown that some of his liver enzymes were elevated, but not enough to concern him.

We’d been in the hospital 2 ½ weeks, and we had few answers.  #1 was about to be back, and I definitely didn’t want him messing us up again.  It was about to be a holiday weekend, and #2 thought we’d be better off at home.  So, we left with the same sick child, still having the screaming spells.  We had Myralax to keep him from getting impacted again, and an NG tube.  Before leaving, they started him back on solids.  We had the NG tube to help him regain some of the weight he’d lost during the whole ordeal.  I did have the pain medicine that would knock him out if it got too bad, but it took 30 minutes to work.  By that time, it was nearly over.

After the hospital, I was definitely not going to see #1 again.  He is a nice man with a great personality, but he really messed us up.  Every time we’d see #2, he’d comment on how very sick Silas had been.  After the biopsy results came back, they started Silas on anti-inflammatories.  After a while, #2 started saying, “I just think he has very severe IBS.”  It was reasonable to think he had IBS, along with all of the other problems, but I knew that wasn’t the answer.

My only consolation was that I had one doctor who really understood just how sick Silas could get.


Tuesday, January 18, 2011

No More Bottles

I’ve heard it said, “Don’t judge a man until you’ve walked a mile in his shoes.”  Yet, so often we do just the opposite.  We look around us and, without really knowing what’s happening in a person’s life, we at least mentally (if not verbally) have a quick solution for how they could “fix” everything.  This is especially true with children.  Before we have kids, we have all of these grand ideas of what well-mannered, obedient little angels we will have.  They’ll never talk back, make noises in church, or throw tantrums - especially in public.  Then one day you have kids, and well…

One of the first things I had to get over during these years was worrying about what other people thought of me.  I actually tried to leave the house with the kids as little as possible.  They were both time bombs ready to explode at any moment, and leaving the house rarely ended well.  We definitely never went to restaurants.  It’s difficult to make a quick exit when you’ve just ordered your dinner.  I might attempt a much-needed emergency trip to Wal-Mart, but even those were disastrous.  First of all, Autumn was dealing with sensory processing issues.  I’ve mentioned that noises and touch were big triggers.  For some reason, large stores did not settle well with her.  (It’s not unique to her, I’ve met other kids with similar struggles who have the same problem.)  If we went to the Galleria, it was a given, Autumn would cry from the moment we stepped in the building until we finally made it out of there.  The whole experience was absolutely overwhelming to her.  Then there was Silas.  You never knew when he would suddenly become irritable or be in pain.  If he started crying, then Autumn would join in because she couldn’t stand the noise of his crying.  For many years, just riding in the van was an issue for Autumn.  Something about it just threw her over the edge.  Most places we went, at least one of them cried the entire ride.

On a good day, someone might see us in the store and comment about how cute and sweet the kids were.  I would smile and pray they hadn’t just jinxed the entire outing.  On the bad days, I had to learn to confidently go about my tasks, ignoring all of the people staring at me, wondering why the kids were screaming.  I used to be one of “them,” so I can’t be too hard on them.  It was always so nice, though, to run into that occasional person who would give a little smile and an understanding glance.

I say all this because at this point in the story, it is now 2008, Silas is about to turn three, and he is still drinking from a bottle.  It’s not that he couldn’t drink from a cup.  He always drank water and other liquids from cups.  It was just the formula.  It was the only thing that didn’t make him sick, and he refused to drink it out of a cup.  Believe me, I had made many attempts.  Autumn’s occupational therapists had given me suggestions, I’d bought every cup imaginable, I’d coaxed and even bribed, but to no avail.  If he hadn’t needed the formula to survive, it wouldn’t have mattered, and I would have tossed them long ago.  However, the formula was the only safety net I had.  Whenever he got bad, we could go back to just formula, and I could get him better.  I’ve heard that kids who have to stay on formula can have this issue.  Some theorize it’s because the formula smells so bad that only the bottle lets them drink it without having to smell it.  Who knows?  Whatever the reason, Silas wasn’t budging.

I had decided it was time for the final battle.  Silas attended a preschool a few times a week.  It would be starting back soon, and it was now or never.  I talked it up for weeks.  The theme:  bottles are for babies, and you’re not a baby any more.  I had resolved myself to the fact that we were going to need the formula for a while.  With that reality, he had to swap to a cup.

I really thought it was quite a brilliant plan.  July 25th was the day.  I had worked it out with someone beforehand.  She had a new, little baby.  Silas and I drove over to their house.  Silas carried in a gift bag with all of his bottles, and he left them there for the baby to “use.”  Silas and I had special cup shopping trip, and that was going to be the end of it.  It had all worked out so well in my head, but as usual real life didn’t cooperate.

Don’t forget - formula was still Silas’ main (often only) source of nourishment.  After we gave all the bottles away, Silas went on a formula strike.  No matter what I did, I couldn’t get him to drink it from anything I had at the house.  After three days, his health was a greater concern than the bottles, and I retrieved them from my friend.  But even this didn’t work.  My campaign had been effective.  Silas said, “No, those are for babies.”  I had really worked myself into a corner now.  Silas wouldn’t drink the formula from a cup…or a bottle!!!

I decided not to panic.  He was nearly three.  He would just have to eat real food.  Surely he’d outgrown whatever the problem was.  So, for the first time in his life, he ate like a “regular” child – minus all of the possible food allergies.  I was hopeful.  This time it would work…it had to.

But it didn't.

To Be Continued…


Monday, January 17, 2011

Happy Faces

In the midst of it all, there were good times.  So, here are some of Silas’ happy faces.

He loved playing in the bathtub,

Jumping on Daddy’s leaf piles,


And just being a boy!

“For the joy of the Lord is your strength.”  Nehemiah 8:10


Sunday, January 16, 2011

Dear Silas

January 5, 2008
Dear Silas,
I’m writing to tell you how sorry I am that your life has been so difficult.  It has definitely fallen short of all I had hoped.  I want you to know that I’m trying to make things better but my efforts always seem to fall short.  I love you so much and don’t want you to hurt or feel bad any more.
I think back on the months and years that you have been in pain, and it hurts me so deeply.  I look at pictures from your first year of life and I can still see the discomfort in your eyes.
And now, I want so badly to feed you fun foods that I know you would enjoy.  What a smile would come over your face to taste some of these for the first time!  I am so sad to have to tell you “no” when you want just a little of what I am eating, and it hurts every time I have to pry tiny crumbs out of your little fingers – crumbs that you searched so diligently to find from the kitchen floor.  I want to be able to stop and grab a quick lunch together when we’re away from home.  The couple times you had French fries, you enjoyed them so!  I would love to treat your to ice cream and other special treats.
I want to have a holiday where I don’t have to hide all the candy everyone gives you before you see it.  I want to go to the Trunk or Treat and actually let you have the candy.  I want to make cakes for your birthday that you can eat too.
What hurts me most of all is that so few people know the real you.  That sweet, fun little boy that is so loving and happy.  I’ve seen him a few times when you were feeling your best, and I know that’s the real you – not the one that whines and screams or can’t sleep.  I want everyone to know how truly special you are.  That smile can melt anyone’s heart, and you have such a friendly personality.
I want you to know that I’m trying to find help, and I’m praying that this will not last forever.  Hang in there with me, Little Man.  And know I’m doing all I can to help you be well.  When I don’t allow you to have things you want, it’s only because I know how badly you will feel soon after you have them.  You are the light of my life, and your hugs and kisses make my day.
I love you!

Reflux, Allergies, and Doctor Visits

The doctors had assured me that all of Silas’ problems were due to reflux and that he’d outgrow it by the time he was a year old.  I wasn’t sure they were right, but all I could do was wait it out.  When he turned one, they said to give it a little more time, some kids take longer than a year.  In February of 2007, we had allergy testing done which showed allergies to milk, corn, peanuts, pork, and cucumbers.  I removed all of these things from Silas’ diet, but it didn’t solve anything.  The doctors changed from saying, “It’s reflux” to “It’s food allergies.  He’ll outgrow it by 3 or 4.”  If making it to one year sounded hard, you can imagine how difficult it was when they told me we had to endure this until he turned 3 or 4.  I pray none of you ever have to watch any of your children live in pain for years on end. 

Six months after the initial visit with the allergist, the only allergy that still showed up was milk.  Another six months later, the test said that all of the allergies were gone.  However, the other doctors stuck with the food allergy theory - even though the allergist said that wasn’t the problem.

Transitioning Silas to “real food” had never gone well either.  Every time I would try to add in foods, he was very sick within two weeks.  My one consolation was that I could put him back on the Good Start formula each time and everything would settle back down with in a few weeks.  He especially had difficulty with the grains most kids eat during this time.  He would end up with a rash, congestion, fever, and abdominal pains.  He could not have anything like cookies or cake.  He would wake up throwing up several times that night and spike a high fever.  Before she left to be with her kids, Ped #2 ran a blood test for Celiac Disease, but it came back normal.  Later, I would take Silas to see Ped #3 during these reactions.  He would not take blood or anything and just say, “It’s probably a virus,” and send us home.  Silas was having these terrible screaming spells as well.  They generally lasted 30 minutes.  Even if I’d tried to drive him straight to the doctor, it would be over by the time I got there.

During all of this, we were taking Autumn to therapy several days a week.  One of the moms that I met was a nurse.  She suggested I look into metabolic disorders.  She said Silas should not have problems with so many foods and said this might be the answer.  In January 2008, we saw a neurologist who specializes in metabolic disorders.  (Later, she would become Autumn’s Neuro #2.)  She found that some of Silas’ amino acids and organic acids were elevated – but not enough to be a metabolic disorder.  I always wondered if the tests were accurate because Silas was only drinking formula at the time, so he was in a fairly good period.  Some metabolic disorders can be controlled with diet, and the child’s levels can return to normal while on the correct diet.  However, Neuro #2 didn’t think it was metabolic, so I focused my research on other areas.

In February 2008, GI #1 scheduled an endoscopy.  It showed signs of reflux, and I believe the duodenum was inflamed.  Until 2008, Silas had diarrhea his entire life.  Suddenly, he started having problems with constipation.  Silas was now two, and his diet still consisted mostly of formula.  When he was on this and nothing else, all of the symptoms would go away.  He was so happy.  I could see glimpses of his true personality, and it was so refreshing.  However, he couldn’t stay on formula forever, so I kept starting over, trying to find things he could eat – each time hopeful that it was going to work.  But every time, he’d end up very, very sick.

I’ve mentioned the screaming spells.  Silas would lie in the floor and scream like someone was stabbing him to death.  When he was a baby, I could hold him until it was over.  The older he got, the harder it was for me to hold him, and I would have to just leave him crying on the floor until it ended.  He did not want to be touched during one of these spells.  Afterward, he would sit in my lap, exhausted.  They occurred most often in the afternoon.  As he got worse, he might have another in the morning and other times throughout the day.  When it was really bad, he would have 2-3 per day that lasted an hour each.  It absolutely ripped my heart out to have to watch him suffer like this day after day.

One week when he’d been in lots of pain, I tried taking him to the pediatrician again.  Ped #3 wasn’t in that day, so we had to see another doctor in the same office.  That definitely didn’t go well.  He told me that it was yet to be seen whether Silas was actually in pain or if this was a behavior problem.  By this time, I was getting bolder and not letting them run over me so easily.  However, he firmly insisted that it was most likely a behavior problem.  I told him that I had worked with kids a lot and I knew something about children’s behaviors.  I also insisted that I was his mom, and I KNEW that something was wrong.  He looked me straight in the eyes and said, “You’d think parents know their children, but really they don’t.”  He also said that we’d had enough tests run and I needed to accept that there was nothing wrong with Silas.  I made it to the van, and fell apart.

 To be at the end of man’s resources is not to be at the end of God’s resources; on the contrary, it is to be precisely in the position best suited to prove and benefit from them, and to experience the surplus of the power of God breaking through and resolving the human dilemma.”  - Philip Hughes