Thursday, April 21, 2011

Vasovagal?

Vasovagal syncope (vay-zo-VAY-gul SING-cuh-pee) is the most common cause of fainting. Vasovagal syncope occurs when your body overreacts to triggers, such as the sight of blood or extreme emotional distress. The trigger results in vasovagal syncope — a brief loss of consciousness caused by a sudden drop in your heart rate and blood pressure, which reduces blood flow to your brain.
(Taken from www.mayoclinic.com.)

When Autumn had her follow-up appointment with the doctor in Atlanta, the Nurse Practitioner we saw that day suggested that Autumn see an immunologist to make sure there wasn’t something we were missing.  She said that Autumn seems to be making antibodies to many different substances.  You may remember that when they did Autumn’s labs, her eyes rolled back for a moment, and she threw up on everybody.  They said it was a vasovagal response.  Autumn ended up having the flu that same week.  When they were putting in her IV at the hospital, her eyes rolled back into her head a few times.  It was hard to say whether or not she actually lost consciousness because she was already pretty lethargic and was lying limp in my arms.

Yesterday was Autumn’s appointment with the immunologist (Dr. I – same one Silas sees).  At the end of the visit, they did labs.  They took several viles of blood before sending us back to the immunology office.  Autumn seemed fine and walked back to our room.  Dr. I also wanted to give her the pneumococcal vaccine.  (He was doing this so he could track how Autumn’s body handled the vaccine.)  After the shot, I helped Autumn to the floor, and I sat down to gather all of our things from the bench before leaving.  Everyone else had left the room by this point.

Autumn was standing beside me, and then suddenly, she passed out on the floor.  I was concerned because I heard something hit the floor very hard.  Due to her gross motor problems, Autumn is used to falling a lot, and it is rare for her to get hurt because she has the whole falling thing down to a science.  This time though, she went straight back and whacked her head on the floor!  When I first looked at her, I could see that her eyes were rolled back, and I knew she’d fainted.  However, when I went to pick her up and make sure she was okay, her whole body was very rigid, and I knew something wasn’t right.  She then began to move her arms like she was having a seizure.

I shouted for help, but no one heard me.  I ran to the hallway, but it still took a minute before anyone heard me.  The doctor was in the room next to us and was the first to make it to the room.  By the time everyone else got to the room, the convulsions were over, and Autumn was lying limp on the floor.  While Dr. I was looking her over, she started gagging, but nothing came up.  They brought her a cup of water.  It was then (as I tried to hold it for her) that I realized how badly my hands were shaking.  They had us stay in the office about 45 minutes to make sure she was alright.  We left with instructions to get her to the hospital if she developed bad headaches or started throwing up.

Here’s the question…  Was the seizure-like episode a result of the vasovagal response or the blow to the head?  Neither prospect really makes me happy.  If it was a result of the head injury, that can't be good.  If it was a result of the labs, is she going to start having these seizure-type spells every time they draw blood or give her shot?

I’m trying to leave a message with her neurologist to let her know what happened.  Autumn looks good for now, so we are praying that there are no further complications from the fall.

We are still waiting to hear the results from the labs they did in Atlanta.  We are also waiting to hear about the slides they were re-reading for Silas.  I called the GI to check, but no one’s called me back yet.  I’ll post when/if we find out anything.

Janel

UPDATE:  Before getting this posted, I heard back from Autumn’s Neuro.  She is going to schedule an EKG/EEG.

Tuesday, April 12, 2011

Lessons Learned from a Closet

Who would have thought that the things lurking in my closets could give great insights into my soul?  But they certainly did.  In my last post, I shared my recent efforts to get organized.  Just organizing things, though, is rarely all that needs to be done.  The most difficult part of the process can be deciding what things to keep and which things it’s time to let go.

I think the real problem is the dreams that many of those unused things represent.

Before Criss and I had kids, we thought we wanted to have four of them.  Now that we have two kids with chronic health problems, even two seems like too many at times.  As I start packing up old baby items from the closets and attic to be given away, it seems to not just be the items that I’m putting into the box but instead the dreams of many happy, healthy children running around the house.  It’s also letting go of the hopes of a fun pregnancy (I was sick the entire time I carried Silas) as well as the hopes of a “happy baby” – one that doesn’t scream in agonizing pain for the first three or four years of his life - one of those quiet babies that you can take anywhere and he just sleeps through the whole thing.

One closet held a small radio intended to be used in bad weather.  It didn’t hold much value to anyone but me.  It was given to me by my grandmother – my “Wichita Granny” who I fondly remember playing with as a child – my Granny who I will never see again on this earth.

My bedroom closet is home to many different sizes of clothing.  When we lose weight, it’s relatively easy to give away the larger sizes – vowing we will never return to that place again.  Yet, it is much more difficult to get rid of the smaller sizes.  When we do, we feel that we’re somehow letting go of the dream of ever returning to that size again.

Another closet held the supplies we had left from Silas’ 2 ½ week stay in the hospital that sent us home with no real answers and an NG tube.  Just looking at the spare NG tube brings back vivid memories of the three adults it took to hold him down while a nurse shoved the tube down his nose and into his stomach.

And there’s more to come.  I haven’t gotten to all of the kitchen cabinets yet.  That will lead me to spaces overflowing with cookbooks filled with recipes I had dreamed of making for my family – the dream family that is able to eat anything I cook (and not end up sick for days afterward).

The problem is that when I hang on to these items, there’s very little space left for the items I actually do need.  In the same way, refusing to let go of the dreams they represent prevents me from enjoying the life I am actually living.

I may never have a “happy baby” or four healthy kids, but I do have a little boy who has such a big heart for others.  I also have the opportunity (through adoption) to change the life a little girl who otherwise may have never received proper medical care or the embrace of a loving family.

I also know that when I pack away the little radio, I am not losing the wonderful memories I have of my grandmother playing hopscotch with me in the driveway.

As I pack away smaller sizes of clothing, I am not giving up my dream of being that size again – only accepting who I am today and choosing to give the clothes to someone who can actually use them before they go out of style or are eaten by moths.

I throw away the old medical supplies choosing to not dwell on past hurts and pain – choosing instead to focus on how far we’ve come.

In packing up these items, I am putting into action my heart’s desire to follow God wherever He leads.  He may chose to one day give those dreams back to me or instead give me new dreams.  Either way, I (and my closets) choose to embrace the life He has given me today.

“Remember not the former things, nor consider the things of old.  Behold, I am doing a new thing; now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert.”  Isaiah 43:18-19 (ESV)

“And he said to all, ‘If anyone would come after me, let him deny himself and take up his cross daily and follow me.  For whoever would save his life will lose it, but whoever loses his life for my sake will save it.  For what does it profit a man if he gains the whole world and loses or forfeits himself?’”  Luke 9:23-25

“Do not lay up for yourselves treasures on earth, where moth and rust destroy and where thieves break in and steal, but lay up for yourselves treasure in heaven, where neither moth nor rust destroys and where thieves do not break in and steal.  For where your treasure is, there your heart will be also.”  Matthew 6:19-21

Janel

Monday, April 11, 2011

A Place For Everything...

…And Everything In Its Place.

I’ve always considered myself to be pretty organized.  I know some people get an adrenaline rush from running, etc.  I get a rush from organizing things.  I jump at any excuse to make a chart in Excel.  And, I have a friend who loves to tell people how I would (as a child) organize her closet for her every time I came to her house.

On the other hand, I can’t stand cleaning.  Dusting is on the list of the things I dislike most in life.  It may in part be due to the fact that I don’t like cleaning around clutter.  I have to pick everything up first and then clean.  By the time I’m done putting everything away, I’m exhausted already – especially now that we have children.  I’m not sure why I didn’t inherit my mother’s cleaning gene.  She absolutely loves to vacuum.  (Hi mom!  I’m sure you’ll be reading this.)

I used to be a “binge” organizer.  When I was teaching elementary school, I would take the first few weeks of summer break and go through all of the cabinets, closets, files, etc. in the house and get everything back in its place.  I would also use Christmas break to work on some small projects in need of help.  Something about having everything organized around me makes me feel more organized on the inside as well.  The opposite can also happen.  When things are unorganized all around me, I feel all frazzled and out of sorts on the inside.

Since having kids, my entire system of keeping the house organized had fallen apart.  So much time was spent on their health issues that cleaning out closets was no where near the top of the list of things I needed to focus on.  However, things have been a bit more settled lately, and I’m trying to use the time to develop a new system.  The days of having two full weeks free to declutter the house are long gone, so I’m developing a plan for working on one closet/drawer/cabinet/etc. per week – more as I have time.

In the midst of this process, I read a book by Marcia Ramsland entitled Simplify Your Life.  It was just the motivation I needed to help me develop a plan for this new season in life.  I have gotten SO many things done the past few months.  It will still take some time to make it through all the nooks and crannies, but I finally feel like I will get to it all – and before the kids leave for college.

Another good resource for getting organized is FlyLady.  While I don’t follow all of her plan, she has a lot of good thoughts and resources.  Some of my favorite FlyLady quotes:

“You can’t organize clutter.  You can only get rid of it.”
“Only keep things that make you SMILE!”

I’ve had a little extra motivation the past couple weeks since the Children’s Ministry at our church is having a yard sale to raise money for this summer’s Kids’ Camp.  I’ve already taken four different loads of things to donate.  I cleaned out the hall closets over the weekend, and I cleared out enough stuff that an entire shelf is empty at the moment.  Oh the joy!  Still trying to decide what will become of the newly found space.

“For everything there is a season, and a time for every matter under heaven: …  a time to keep, and a time to cast away.”  Ecclesiastes 3:1, 6

Hope you will take time this week to do something you enjoy.

Janel

Saturday, March 26, 2011

GI Appointment - 3/25/11


Yesterday was Silas’ appointment with the GI doctor.  If you’ve been reading, you may recall that this is our second GI doctor.  We swapped from #1 to #2 (they’re actually in the same practice) when Silas was admitted to the hospital and I realized that #1 had been wrong about SO many things and really messed us up at times.

With Dr. Weinstein pretty much ruling out Silas’ problems being metabolic and suggesting that the answer lies somewhere within Silas’ digestive system, that leaves allergic-type disorders of the digestive system at the top of the list.  We know that every biopsy they took in Silas’ colon showed inflammation.  However, #2 has always said that he does not believe Silas has Crohn’s.  Early on (about four years ago) I had asked #1 about it being en eosinophilic disorder (too many eosinophils somewhere in the digestive tract).  He told me that wasn’t it.  Before Silas’ second endoscopy and first colonoscopy (nearly three years ago), I asked #2 if they would check for mast cells.  He said they would.  After the procedure, I asked if they had checked for the mast cells.  He told me they had.  Last year, I was looking into mastocytosis again, and I called the GI office to double check and make sure they had checked for the mast cells.  The nurse assured me that they had.

That leads us to yesterday’s appointment.  I asked #2 if he could look back and tell the number of eosinophils and mast cells they counted in the biopsies taken during the earlier procedures.  SURPRISE, SURPRISE…  NEITHER of them had EVER been counted!  Even though they had told me they were – FOUR different times.  I might be really angry right now if I hadn’t become so used to doctors who don’t really know what they’re talking about.

So, #2 is having the biopsies from both endoscopies and the colonoscopy reread and the mast cells and eosinophils counted.  I’m not sure how long this will take because he said the lab will not consider this a priority.

If there are too many of either of these cells, we could have our answer.  If there are not too many cells in the biopsies, that doesn’t rule out either disorder because Silas was on elemental formula when all of them were taken.  If the counts are normal, we will be doing a food challenge for about a month in June so we can do new scopes in July.  We will do this during the summer while he’s not in school because the effects of him needing to eat foods that bother him for the scopes will most likely be pretty bad.

Our prayer right now is that they will be able to find the answers we need by rereading the previous slides.  Otherwise, we are in for a rough summer.

“Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation.  God, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.”  Habakkuk 3:17-19

“If it seems slow, wait for it; it will surely come; it will not delay.”  Habakkuk 2:3b

Janel

Friday, March 25, 2011

Field Trip Time!

On Wednesday, Silas got to go on his very first field trip.  He was so excited!  I, on the other hand, was a little apprehensive.  They were going to California Pizza Kitchen.  Silas is used to having to eat differently from everyone else, and he usually handles it very well.  However, I am always cautious about big events that revolve around food.

The weeks leading up to the trip, we talked about how he would participate in the trip with his friends, and he could make a pizza for me to eat since he would need to eat his food.  This is a system we came up with a while back.  Any time there’s an activity that involves food, I encourage him to make one with everyone else and give it to someone (usually Daddy).  That way he can still participate, but he doesn’t actually eat anything that will make him sick.

Several days before the trip, Silas came up to me and said, “Mommy, I don’t know how to throw the dough up in the air.” (You know, like they do on TV.)  “Maybe my teacher knows how.”  It was just too cute and funny.  I assured him that the people that worked in the kitchen would know just what to do.

Here is a picture of Silas standing at the counter, telling the cook what toppings to put on his (my) pizza.


As Silas sat eating his chicken and millet bread in a room full of children eating pizza, I wanted to be sad for a moment.  It often hits me at some point during such events.  I chose instead to focus on the fact that he was having a good week and was enjoying the time with his friends.

Today was my second field trip of the week.  Autumn’s class has been talking about Community Helpers, so their trip included stops at the bank, Publix, McAlister’s (for lunch), the police station, and the fire station.  Silas had an appointment scheduled with the GI doctor, so I was only able to join her for the lunch portion of the trip.  Here she is eating her baked potato.


I’ll be back soon to post about today’s visit with the GI doctor.

Janel

Tuesday, March 22, 2011

My Little Stud

Yesterday (and so far this morning), Silas has been in THE BEST mood.  It is so nice when it happens, and I try to relish every moment.  Things are starting to warm back up around here, and I can only hope that spring and summer will bring us more good days.  (For some reason, spring and summer tend to be better months for him.)

Not that Silas has been in a terrible mood.  He’s just not really been himself much.  It’s the little things that only those who know him well would notice.  He tires more quickly, doesn’t talk as much, and gets frustrated very easily.  But yesterday, he was talking up a storm.  Autumn somehow missed her bus yesterday, so I had to wake Silas up from his nap for us to go and pick her up.  Silas started talking to the lady in the school office, and I didn’t think we’d ever get out of there.  J  It was fun though.  We also had a family “Sock War” last night before bedtime.  (Criss folded some of his socks into little balls and we all threw them at each other.)  Everyone had the best time.  Things like that can make Silas tired, and he can suddenly become very agitated – but not last night.  So fun!  If you have kids, you really must plan your own Sock War very soon.

This past week, I finally bought curtain rods so I could hang some curtains I had bought with my Christmas money.  We also have a picture we need to hang, so Criss had borrowed my dad’s stud finder.  Silas was looking at it this morning and held it up to his chest.


Here’s a closer look since the words are hard to see in the first picture.


“Stud found.”  It was just too funny!

Here’s hoping for more happy days to come.

Janel

Tuesday, March 15, 2011

Autumn's Many Faces

Autumn’s had an eventful few months.  January 26 was the 100th Day of School for her Kindergarten class.  The kids dressed like they were 100 years old.  Here’s what Autumn looked like that morning.  She was wearing a crazy wig along with a shawl and walked with a cane.


Autumn was admitted to the hospital on Friday, February 11.  She had gotten dehydrated while sick with the flu.  Here she is the next day – looking so much better.  She went home later that afternoon.


The weekend that Autumn was in the hospital, she was registered for the Mercedes Kids’ Marathon.  They keep track of the kids’ walking/running during PE time at school, and they complete the final mile the day of the race.  Criss was going to walk with her to make sure she made it okay.  Maybe next year…

The last picture is from this past week.  The Kindergarten classes performed a play entitled “Friendly Neighborhood Helpers” at this month’s PTO meeting.  Autumn was one of the vegetable grocers.  The kids were SO cute, and they did a great job!


Autumn’s smile will soon have a new look as well.  She went to the dentist this morning.  Her permanent teeth on the bottom are growing in behind the baby teeth.  We’re going to have to go back soon to let them pull the baby teeth.  Not looking forward to that one.

On a happy note, nearly two years ago, someone at Autumn’s preschool who had worked with Magic Moments gave us a form to apply for Autumn to receive a “wish.”  They were a little behind on funds at the time and told us it might be a little while.  Well, someone from Magic Moments left a message on my phone today saying that we had been approved!  We should be getting forms in the mail soon with more info.  Looks like we’re going to Disney World!

Janel

Saturday, March 12, 2011

Eosinophilic Disorders

I mentioned in the last post that Dr. W and I discussed the possibility of Silas’ problems being caused by an eosinophilic disorder.  At least once or twice a year I have someone bring up the topic and ask me if the doctors have ever considered that as a possibility.  I always tell them that I asked about it years ago and GI #1 said that wasn’t it – but now I’m not sure that he actually tested for it.  We see GI #2 in a couple weeks.  I am going to ask for the exact eosinophil counts from Silas’ previous biopsies.  If they’re not on the reports, I am going to ask for the biopsies to be reread and the eosinophils counted.

There are several different disorders that involve an overproduction of cells and can lead to someone reacting to numerous substances – food and non-food.  Over the past year, we have pretty much ruled out one of these – a mast cell disorder / mastocytosis.  One of the main medications used to treat this is Gastrocrom.  Silas reacted to the Gastrocrom.  Also, Dr. I (Immunologist) tested Silas’ tryptase levels, and they were not elevated (which they should be if it were a problem with the mast cells).  Eosinophilic disorders are along the same lines, with too many eosinophils somewhere in the body.  The one getting the most attention these days is Eosinophilic Esophagitis (EE or EoE).  It involves too many eosinophils in the esophagus, but the extra cells can be located anywhere along the digestive tract.

As far as treatment…  They begin by seeing if they can find an allergic cause (prick tests, patch tests, etc.).  If allergies are found, these items are removed, and hopefully the problem is solved.  It becomes more complicated if allergies cannot be found or if the child reacts to an abundance of foods.  If this is the case, the child may have to be put on a feeding tube and given elemental formula to give the digestive system a break and get rid of the extra cells.  Once all of the extra cells are gone, foods can be reintroduced one at a time, with the hope that you can find something that doesn’t trigger a reaction.  Some people end up with 15 or so foods they can eat.  Others end up with only one or two – or nothing at all.


At this point, Silas eats mostly chicken, millet, rice, and white potatoes or potato chips.  These things bother him the least – but they still cause him pain.  And, he cannot even eat these few foods without taking three medications daily.  That is another interesting thing about the Eosinophilic disorders.  They’re not sure why, but Singulair can lessen some people’s symptoms.  Silas has been on Singulair for a while now.  Not for asthma but because it helped his abdominal pains.  When I told the doctors this, they just looked at me like I was crazy.  Maybe I’m not so crazy after all.  (Well, maybe just a little.)

Here are some of the most helpful links I’ve found concerning eosinophilic disorders:

What Are Eosinophilic Disorders? - Here is an easy-to-read explanation of the disorders.

Life Without Food - This is written by a child who has the disease.

I will end with an excerpt from an article I found here.  It’s from a piece titled “In Your Own Words” by Michelle Racioppo.  While we do not know that Silas has an eosinophilic disorder, so much of this article mirrors our daily lives (though Silas does not have a feeding tube).  Reading the last paragraph brought tears to my eyes as I thought of Silas at his own birthday party watching everyone else eat the Spiderman cake he chose - knowing he would not be able to eat any of it himself.

This disease has more questions than answers. It truly seems so unnatural to ask a child to not eat food. To trial certain foods and then have to take them way again – It is absolutely heartbreaking…  But it is him who has endured the pain, the tests, the medication, the surgery, the food deprivation, the cravings, the Everything. It is him who is our Hero. I am humbled and honored to be his mother. We have watched him with his quiet strength, develop in his faith, grow in his character, shine with empathy for others.

If you saw Sam, you would never know unless we told you that he has this disease. You would surely never guess he had a feeding tube in his stomach. He runs, plays, wrestles like all 8 year old boys do. We are grateful that he “looks” and “acts” so normal. We are grateful for all of the “normalcy” he does have in his life: his friends, his brother, his school, his grandparents, his love of baseball and video games.

However, part of what children with this disease can face is discrimination, because they do look so good on the outside, some find it hard to believe they are really sick. These kids need our compassion and understanding. The damage and pain is ravaging them on the inside, in a place you cannot see. But live with an EGID child and you will know the truth. Hold them, as they cannot sleep at night because of the pain in their stomach. Follow them as they reflux and run to the bathroom. Watch them as they play hard outside and then collapse on the couch saying ”mommy my tummy hurts so bad!” Wait for the phone call (for the third time this week) from the school nurse to please come pick up your child as he is too sick to stay. Observe them as they fast for their next endoscopy procedure. Grieve for them as they put their face in the plate of family dinner that they are not allowed to eat, but just want to smell. Cry when they decline their best friend’s sleepover because morning will be too hard to not eat favorite waffles. Celebrate at a Birthday Party until you realize everyone can eat the Pizza and Cake, except for one. Then you will know. You will know the grief of watching what a child with this disease lives day in and day out. It is courage defined.

Janel

Tuesday, March 8, 2011

Dr. Weinstein - March 2011

Last week was our much anticipated visit with Dr. Weinstein.  He is the endocrinologist who specializes in Glycogen Storage Diseases.  He sees patients and performs research on GSD at Shands Hospital in Gainesville, FL, and is associated with the University of Florida.  If any of you reading came across this site because you or someone you know has GSD, you MUST go to see him.

The trip down on Tuesday was long - almost 10 hours.  But, to be five, Silas did well, and we arrived around 7:00 pm FL time.  We stayed at the Country Inn & Suites because it is the only hotel in the area with an indoor pool, and it is only about 3 miles from the hospital.  We didn’t have much spare time, but the pool was a good way to let Silas play a bit after riding all day and before going to the hospital.

Wednesday morning, we checked into the hospital about 10:00.  Not too long after that, we met with Dr. W.  I was encouraged because he was very committed to helping us find an answer before we left.  He wasn’t sure that Silas has GSD, but he thought it was a disorder of gluconeogenesis (I think that’s the right one).  The nurses put in an IV so they could do hourly blood draws while Silas was there.  With the IV, they could just poke him once and get what they needed from the IV line each time.




Silas has been to so many doctors and been poked so many times.  He was very hesitant at first and tried to scope out the situation.  However, Dr. W tries very hard to make the kids have a good time.  There is a play room on the hallway that the kids can use.  It has toys, games, videos, crayons, paint, etc.  There was even a Wii in our room.  The kids can also take one of the tiles out of the ceiling and paint it.  And, Dr. W often brought presents.  One time, Silas picked out a Christmas video from the play room.  Dr. W said, “You chose a Christmas video.  That means you get a Christmas present.”  Silas was thrilled.

I mentioned the ceiling tiles.  Below is a picture of the tile Silas painted.  He said it is him and Dr. W playing outside together.  He had Criss help him with the sun, but Silas did the rest.  Notice the dots inside Silas’ tummy.  He said that was his chicken nuggets and bread.  The nurses loved it and had us put it where they could see it from their office window.




Dr. W began by having Silas eat his usual diet.  Nothing abnormal was showing up in his blood work, so the next day (Thursday), we added in some of the foods that we know bother him.  Even with the food challenge, nothing was showing up.  Later that day, Dr. W told us that if nothing had happened by dinner, we would be discharged.  (Our visit was originally set for one night.  However, Dr. W had said we might add a night if needed.)  He said that if the problem was metabolic, there would have been abnormalities in Silas’ blood work by this point.  I felt sick at my stomach.  I had hoped that we would finally have answers and that someone would be able to help him.

Dr. W had a metabolic specialist from the hospital drop by our room as well.  The two of them believe that Silas’ low uric acid levels are a “red herring.”  The low levels were one of the indicators that Silas’ issues might be metabolic in nature.  They now believe this is a separate, unrelated issue.  Dr. W believes the answer lies within the GI tract, and that our GI doctor is the one who will have to find it.  That was difficult to hear.  Although I really like our GI doctor, he has never been aggressive about finding a diagnosis for Silas.  Even after Silas was in the hospital for 2 ½ weeks, he kept insisting it was IBS.  IBS does NOT cause inflammation!!!  We see him again in the next couple weeks, and we will just have to see how that goes.  Dr. W mentioned wanting to speak with him sometime, so maybe that will help.

Here is a picture of Silas with Dr. W just before we left.  They are standing under the tile Silas painted.  Silas is holding up some of the toys Dr. W had given him that morning.  They had kicked the ball around the hallway together.




It was late, but we decided to go ahead and drive all the way home that night.  We knew the extra foods Silas had eaten would start to bother him at some point, and we knew it would be easier to drive at night with him asleep for most of the trip.  We made it home about 2 am on Friday morning.  I coordinate the children’s choir at our church, and we had a lock in to kick off the new season that night.  I was tired, but it went well.

Silas had been feeling pretty good before the food challenge, so it didn’t send him completely over the edge.  He was more irritable Friday through Sunday, with Sunday being the worst.  The other strange thing is that Silas developed a rash all up and down the arm that they had put the IV in.  I didn’t notice it until Saturday.  He just reacts to so many things.

One idea that Dr. W and I briefly discussed is the possibility of Silas having an eosinophilic disorder.  I will have to save that topic for next time.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”  Psalm 73:26

Janel

Monday, March 7, 2011

Cozumel & Other Ramblings

In the past month, we’ve been in five different states and visited another country.  I’m going to try and catch up everything that’s been going on in this post – except for our trip to Florida.  That will need a post all by itself.

We started the month driving to Georgia for Autumn’s appointment at Medical Neurogenetics.  She was sick for nearly two weeks after that.  Her fever and symptoms would be gone for a day or two and return again.  After several more doctor visits, they decided to put her on an antibiotic.  Not that they could find any infection.  They just decided they had to do something to get her well.  That was good because it was time for us to leave for our cruise.  We really had not been sure that we were going to be able to go.  When I asked the doctor her opinion, she said, “Well, there are flights out of Cozumel every day.”  That was not very reassuring.

On February 17, we traveled through Mississippi and into Louisiana.  I really must ask – is there anything in Mississippi?  Just over the state line, there’s a larger city or two.  After that, you’re lucky to find a place to go to the bathroom – much less somewhere you can eat.  The Louisiana sign is always a welcome sight.

Criss and I greatly enjoyed the cruise.  We desperately needed to get away, and what’s better than people cleaning up after you and feeding you all day?  Besides that, we had a larger room this time, and that was a nice surprise.  We boarded the ship on Thursday, enjoyed a day at sea on Friday, visited Cozumel on Saturday, spent another day at sea on Sunday, and disembarked on Monday.

For our excursion in Cozumel, Criss and I chose to explore the ocean in a two person boat.  It was a blast!  Here’s a picture of us sitting in our boat out in the ocean.


After the boat ride, we had lunch and relaxed here:


Then, we walked through some of the local shops, and bought a coconut purse for Autumn, a shirt for Silas, and vanilla flavoring for our moms.  A big THANK YOU to Criss’ company for sending us.

We traveled from Alabama to Florida March 1-4.  That information will be in my next post.  Autumn is finally feeling better – though still sometimes more tired that usual.  She keeps wanting to take a nap at school during PE time.  J

Things are continuing to fall apart around the house.  The day before we left for the cruise, a plumber came to fix the water leak in the yard.  Someone from Alabama Power finally came by to test our meter and said it is working correctly.  So, we have a heating & air guy coming by the end of this week to see if that’s what’s causing the problems with our electric bill.  Yesterday, the front door lock broke.  (Picked up a new one today.)  For several weeks now, the washing machine keeps getting stuck and you return to find the clothes still sitting in a tub of water.  Our dish washer is leaking water, and it appears that we have two vehicles leaking oil.


Had to make a run to the grocery store this morning.  I’ve come to view Wal-Mart as a necessary evil in life.  I would avoid it altogether if I could, but it’s just so much cheaper.  I’ve been learning to watch the sales at Publix, etc., so I don’t go nearly as much as I used to.  However, when I have a lot of things I need to buy at once, there’s just no way around it.  Some of you may be wondering why I have such a distaste for the store.  Well, it used to be my favorite place to shop, but around here, all of the stores continue to go downhill.  Today, there were several “20 item or less” lines open, but ONLY TWO regular lines.  I’m glad Silas was being cooperative or we never would have made it.  After we’d been waiting in one of the lines for 15 minutes (with the cashier still barely visible in the distance), a third line opened, and we finally made it out of there.

If I were one of those moms who bribe her children to be good in the store, we might have left the store with two new sea creatures that are supposed to grow in water.  And, those two new sea creatures might be “growing” in the bathtub right now as I’m typing.  But really, what mother bribes her children with a toy just to be able to buy groceries?  Surely not me.  J

If only life were like a cruise ship…

Janel