C Diff Update

I have been trying my best to update everyone on how our appointment went today but also thought a blog update would help to share everything. We received tons of information today and many answers which is a step in the right direction. 

First off, I would like to begin by saying thank you to everyone for their outpouring of thoughts and prayers as we continue to seek answers and find a solution to Grant's ongoing issues with C Diff (see my original C Diff post).  We are incredibly blessed to have such amazing family and friends in our lives.

Matt and I left the appointment today at Children's Hospital feeling reassured and refreshed.  We both agreed that we finally had some answers and it felt great to talk to someone who is extremely knowledgeable about C Diff.  The most reassuring thing to hear while we were there is that the strain of C Diff that Grant has is not a resistant strain (this is becoming much more common).  Dr. Werlin said he knows it isn't resistant because Grant always initially responds to treatment with both Flagyl and Vancomycin.  He did, however, say that Grant's strain is extremely stubborn.  For some reason we are still having a difficult time ridding his body of all of the spores.  Unfortunately, the medication kills the bacteria but not the spores (basically the bacteria's eggs) being left behind.  Dr. Werlin's protocol for epidsode 4 was 5 days on Vancomycin, 5 days off, and 30 days on with a tapered dose.  As he said in our appointment today "that was supposed to work." 

Well obviously that approach didn't.  He is now suggesting we try a "pulse therapy" involving 30 days on flagyl, 5 days off, 30 days on flagyl, 5 days off, 30 days on flagyl, 5 days off, and finally 30 days on flagyl then off hopefully forever.  Yes, you read that correctly!  Grant will be on and off medication (on more than off) for the next almost 5 months.  In conjunction with the Flagyl, we are supposed to switch brands of probiotics to Florastor which has been clinically proven to help with C Diff.  This raised many questions on our end.  Is this even safe being the first.  Of course he had to give us the "there are risks with any medication" spiel but overall he reassured us that this has been done on many occasions with people of all ages and Grant will be ok.  He encouraged us to still get his hearing tested now and then again when he has completed all the medication so we have a benchmark and reassurance that his hearing hasn't been affected as many antibiotics can do.  And most of all he is hoping these pulses will allow for all spores to hatch and be killed off once and for all. 

When talking about treatment options, I asked about the possibility of doing a fecal transplant.  Fecal transplants have been shown to be more effective on recurring cases of C Diff than continued medication.  They involve taking the stool of a healthy donor (usually a family member), making a slurry solution with saline, filter it and seed the large intestines (usually with a colonoscopy being the preferred and most successful method).  Well, unfortunately they are not yet performing this procedure at Children's hospital.  Dr. Werlin is very excited and pushing for this as soon as possible but it is caught up in various stages of approval.  He said if Grant was a teenager he would send him to Froedert and their GI team and they would do it right away.  However, they would "not touch a 15 month old" over there.  Dr. Werlin did indicate that if this treatment option does not work he hopes they will have a protocol in place at Children's for fecal transplants by then or we will make sure it happens somewhere.  There are options for doing at home fecal infusions (enemas) and he said he would gladly show us every step involved in that so we could do it at home if worse comes to worse but enemas aren't as effective as colonoscopies because they only seed the colon versus the entire large intestines.  I know it all sounds extremely yummy and I can't say we are brave enough to do at home fecal infusions but unfortunately many patients suffering from C Diff are having to resort to this.  Insurance companies are slow to approve the costs associated with fecal transplants because they still consider them experimental and people are desperate and resorting to doing them at home.

So basically this is where we stand...  Questions answered, concerns put somewhat at bay for the time being, and continued praying that we are finally going to be rid of this mess in t-minus 5 months.  Slightly frustrated because if we could do the fecal transplant with an up to 92% success rate this could all be over much sooner.  I know this was long and tons of info and I even left some of the not as important details out.  Again thank you to everyone for being so concerned about our little man and praying we got some answers.

Love,
We three Fishers       

15 Months

Laying on Monty

This post is just a smidge late this month.  I wanted to wait until after Grant’s 15^th month appointment to update on his growth chart and overall checkup.  The checkup went well and he is right on track developmentally.  Our pediatrician advised that we should have Grant's hearing checked merely as a precaution because antibiotics are known to effect hearing.  Grant has been on them so much since November and most recently had the month long course of vancomycin.  We would just like to ere on the side of caution.  She also went through her normal spiel on why we should vaccinate him but wasn't pushy or rude.  Although, we have still chosen not to do any vaccinations.  Otherwise, things have been plugging along at a nice pace and we have thoroughly enjoyed the laid-back month.    

Growth:  At his 15 month appointment, Grant weighed in at 23.0 lbs (30%), 30.5 inches tall (50%) and a head circumference of 18.5 inches (50%).  Grant is pretty much all in 12-18 month and 18 month clothing.  Shoes are 4’s and some 5’s now.  He now has 9 teeth.  This month he got his lower, right lateral incisor and also his lower, left first molar. 

Language/Comprehension:  He is a pro at the signs that we have been stressing and is using them in the proper context more and more.  He knows eat, more, all done, and please.  We have been working on thank you and drink and they work on several others at daycare as well.  Grant now says “Hi” and loves to get a “Hi” in return which then turns into a game of “Hi” exchanges.  When Matt arrives home from work, it is usually to Grant running towards the door saying “Hi” over and over again.  He will also say “bye” and wave but not nearly as enthusiastically as “Hi” 

On 3/18, he folded his hands to pray at supper when we said let’s pray.  I think it made my week.  He was so proud and just looked up and smiled at us and waited for us to start.  Needless to say, it pretty much melted my heart.  I also think he is trying to say amen now too which sounds more like “ma-men”. 

He can blow a kiss (3/21), give high fives (3/27), tell you what a monkey says, he knows where his feet/toes are and will try to put his shoes on.  He is also quite the helper when we ask him to shut various things or put stuff away.  I like to put him to work in the kitchen!  

High five for daddy at supper

Personality:  I have decided Grant is more observant than ever.  He loves to sit back and watch and study things and then try to do the same thing.  He is basically a little copy cat.  One afternoon he watched Matt scrape the mud off his boots with a shoe brush and Grant walks over to the brush and tried brushing his feet off.  On another occasion, I was spray painting and he grabbed an empty can and began “painting” as well.  It’s not just him copying others though.  It’s the way he watches and tries to figure everything out.  I definitely think he is going to be handy like his daddy!  He is also an entertainer which has emerged in just the last week or two.  We were sitting around the table at Matt’s grandma’s house and he was shaking his head no and being silly.  Well, then we all started asking him Grant do you like this person or that person and each time he would shake his head no so we would all crack up laughing.  Well the more we laughed, the more animated and into it he got.  He was definitely feeding off of our energy.

Roarrrrr... Grant scaring us

His classic flying pose

Things he likes:  His ABC flashcards (he is obsessed and if they are in sight he wants you to read them!), opening/closing the garage door, “answering” the phone and saying hi, hiding and scaring people with a roarrrr, and "flying".  Grant also LOVES finding belly buttons!  He will play with his and then walk up to Matt and I and pull our shirts up, stick his finger in, lower your shirt, raise it back up and start all over again.

 





Funniest moment(s) this month:  When we pull the plug to drain the water after bath time, Grant pushes it back down because he doesn’t want to get out.  He had his first experience in a sandbox (3/20) which entailed him being a little squeamish at first and not quite sure about the texture but ended in trying to eat handful after handful of sand. 

Biggest change(s) this month:  Well, it was just last month that I posted about the fact that Grant seems to be opposite of most of the children at daycare in that when I drop him off in the mornings he takes off and starts playing instead of crying.  In the last week or so, this has changed.  When I drop him off at daycare and try to leave, he cries and clings to me.  And when I pick him up he has been running into my arms which is the exact opposite of previous months.  I don’t mind that change so much!

Firsts:  On 3/13 he successfully ate with a spoon.  He had practiced for a long time and likes to hold the spoon while we feed him but had never actually gotten food from his bowl or tray into his mouth.  He now feeds himself with a spoon at every meal rather successfully I might add.  We still shovel extra food in while he is distracted because if nourishing himself was left solely to his hands I think he would waste away because not every spoonful actually makes it to his mouth.  We have also pretty much retired the highchair and have opted for a booster at the dining room table instead. Grant has been doing a fantastic job and with the help of a plastic mat protecting our area rug in the dining room, messes have been kept at bay.
    

We attended our first parade on St. Patrick’s Day 



Grandpa showing Grant the big truck like he drives

Family picture at the parade

Posing with his Easter basket after he found it

We also hosted our first large family holiday get together on Easter which entailed tons of food and an Easter egg hunt for the kids.  Grant hunted like a champ and even with a couple tumbles because of our hilly yard he never lost his Easter basket.  Although, every single egg from his basket was scattered around him.

Carefully placing his eggs in his basket

Then gracefully tumbling and losing every egg

Playing on the front porch

Mobility:  Grant is getting much better at going down the stairs.  He has been going up them since 9 months but had yet to master going down.  He now lies on his belly and will slide down but still occasionally stands up half way down, turns around, and tries to walk off of them!  When only two or three steps are involved, he likes holding your hand and walking down them like a big boy. 








Illnesses:  We nearly had our first trip to the ER on 3/11.  Grant came down with the croup again (3^rd time this season).  He woke up coughing at 11:00 pm that night and within 30 minutes it had turned to the full fledge croup cough and he sounded like a barking seal.  We tried all the normal tricks (steam, humidifier, cold outside air, and nebulizer) none of which helped.  He was absolutely miserable and as the night went on, he wasn’t able to rest at all.  His breathing was much more labored than the previous two times.  At one point, around 2:00 am we were loaded in the car headed to the ER but he really calmed down and settled in so we turned back around and decided we could make it until morning to get a steroid shot.  There was drastic improvement after the shot and I am happy to say the croupy cough didn’t return the next night. 

Of course, following a cold and the croup he came down with an ear infection just a couple days later.  He has tubes and was having some drainage so we visited the doctor for some ear drops (I refuse to put him on any type of oral antibiotic with fear of the C Diff returning).  Well, his ears were so goopy from the drainage we ended up at the ENT who had to suck the goop out (yummy I know!) so the drops could reach the ear canal and make their way through the tube.  He was good as new in a matter of days!

Grant has also now completed his one month round of vancomycin taper so we are keeping our fingers crossed and hopefully bidding C Diff good riddance forever.  I am happy to say that overall it was a relatively quiet month on the illness front which we haven’t experienced since October!

A new project...

So Matt and I decided that it was a must that we do something with all of the art projects that have been piling up on us already from Grant.  We decided to take a little spin off of something that Matt’s mom has had going for many years.  In her kitchen, she has essentially devoted a wall to art projects, newspaper clippings, and other keepsake items that have come on gone through the years.  I am willing to bet that if you dig deep enough some of the things date back many years.  It is really neat because in some ways it is a timeline or snapshot of the MANY things that have gone on in their lives through the years layered upon each other.

Matt and I decided to devote an area in our kitchen for basically the same purpose.

Our empty wall...

We created a bulletin board of sorts divided into three sections: cork, dry erase/magnetic, and a chalkboard.  We purchased the cork and dry erase/magnetic boards and bought chalkboard paint and made our own chalkboard using finished plywood.

I covered the cork board in fabric that matches some of the colors in our kitchen/living room areas.  Matt adhered the three boards to plywood using ply glue, framed it all out, and screwed it to the wall (doing very little damage in the process because it is all one piece assembled separately and then hung).

The 3 boards before gluing and framing.

Grant helping daddy glue

I am so excited to start fill in more of the space with Grant’s artwork and memories of our own!