It has been a rather exhausting month.
We found out Grant had C Diff again and had
an appointment at Children’s Hospital in Milwaukee.
It seems like it has been one thing after
another and I am very much hoping for a much quieter, fun coming month.
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| Reading in his favorite spot... the dog bed |
Growth: Grant now weighs approximately 22.8
lbs.
At a doctor’s appointment on 5/1 he
had a naked weight of 22 lbs 12 oz so he is actually down a little in weight
again.
More on that in the illness
section…
I would say he is still measuring in at about 31-31.5" Clothes are all still pretty much the same: 12-18 months and 18 months, shoes 4’s and some 5’s and size 4 diapers.
Teeth: He hasn’t gotten anymore new teeth but his remaining 3
molars are
very close to erupting as well as some of his canines!
Yikes!
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| Rocking on the front porch |
Language/Comprehension: Some of Grant’s new words for the month include night
night 4/25, papa 5/5, pop 5/6, and more which
sounds like mar. We joke that he
sounds like the sea gulls in Finding Nemo because he will say “mar mar mar”
over and over while signing. He signs “thank
you” and is very good at signing “more please.”
When seeing a semi or big truck on the road, he makes a vroom sound and
everyday he points at the cows on the way home and moos. When we say "yuck" or "dirty," Grant will clear his throat over and over trying to imitate yuck.
On 5/3 while sitting on his potty doing ABC flashcards, we
had completed A-Z and were back at A.
I flipped
the card over and he said “A.”
I thought
maybe it was a fluke but a few minutes later in the bath tub he was surrounded
by his foam bath ABC’s and I asked him where the A was and he grabbed it
without hesitating and held it up.
He
has identified A in several other places since then!
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| Writing with the sidewalk chalk |
Personality: It has been a rough month for biting.
Just when we thought it was getting better Grant set a personal record we never wanted him to hold.
He bit 6 times in one week and 4 of those 6 actually occurred in one day!
It is very frustrating and hard because we suspect he still isn’t feeling well and just isn’t himself and there is nothing we can do about that aspect.
I hope the other parents realize we are working on it diligently and not ignoring the issue.
We miss our happy go lucky little boy who feels good and isn’t irritable and crabby most of the time though.
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| Helping put the groceries away |
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| Trying to cut his toe nails |
One of Grant’s teachers made the comment that Grant not only likes to see how things are done and copy you but it’s like he truly wants to understand how you did it or how something works. We have noticed the same thing. He gets the cutest little crinkled face and look of concentration when he is trying to figure out how something works. I definitely think he will be handy like Matt and a Mr. Fix It.
Things he likes: Grant LOVES when I sing to him. There aren’t enough songs and rhymes and
poems. He always asks for more. He is probably the only person that has ever
asked for more when I sing because Lord knows that I stink! Grant is also very into bubbles right now! If you don't keep them out of his sight he will beg and beg and beg.
Funniest moment(s)
this month: Grant now knows all the
motions to “If you’re happy and you know it.”
He will clap his hands, stomp his feet, say Amen and even touch his
fingers to his cheeks when you sing the line “then your face will surely show
it.” And he always asks for more of
course!
He has also learned how to make farting noises by blowing on his arm :)
Biggest change(s)
this month: He is back to not
throwing a fit at daycare when I leave. He has also have very little appetite... I mean tiny! We agree with the doctors that it is most likely because of the medication but its scary to think that he still could have 96 days left on it (more on that below). The doctors literally told us to put a extra butter in everything for him as well as give him pediasure and carnation instant breakfast to add more calories where we can.
Notable Firsts: First trip to the dells on 4/13
and went hiking at Mirror Lake State Park.
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| Sliding down the frog tongue |
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| Splashing with Daddy |
On 4/29 he peed on the potty for the first time. We introduced it the night before just to
have him start sitting on it and getting used to it and the very next night he peed in
it! Of course it was a fluke and he has
no idea what he did but you have to start somewhere right?!?
On 5/7 he climbed on couch for the first time.
We were watching TV and turned back to look
and he had crawled up there and was laid down, sprawled out.
To this point he hasn’t been much of a
climber so we will see where this takes us!
Illnesses: Just days after turning 15 months old and
after exactly 7 days of being off his last rounds of meds C Diff returned for
the 5
th time.
Our doctor
wasted no time in sending us directly to Children’s in Milwaukee.
Dr. Werlin came up with an action plan that
we have started but still aren’t completely happy with.
(See the
C Diff update post for some more
details.)
It has been a struggle daily
with Grant because we are convinced the meds metrodinazole (flagyl) which he
has been on before (the first two cases of C Diff) but not for this long are making him not feel well.
He has very little appetite, is irritable,
and from things I have read of adults on this medication it causes a metallic
bitter taste in your mouth during the duration of the dose.
No wonder he doesn’t want to eat!
Because Grant will be on this medication for so long and
antibiotics are known to cause hearing loss and problems, we were also advised
by both our pediatrician and the GI specialist at Children’s to have Grant’s
hearing checked and monitored over the next couple months.
On 5/7, we had our first appointment and
didn’t get the best news.
He failed his
screening in his left ear.
She tried
three different methods to gauge his hearing and eardrum function.
The first, an otoacoustic emission (OAE) he
passed on the right but failed on the left.
She then used a tympanogram to ensure that he didn’t fail because his
tube was plugged.
Well, unfortunately it
wasn’t as simple as that and once we got him in the booth with headphones for a
screening it didn’t go too much better.
It was really interesting to see how they screen children that age
because they can’t hold the clicker and press it when they hear a noise.
Instead, mounted up on the wall were a teddy
bear on the left and right in a darkened box with plexiglass that you couldn’t
see until the audiologist sounded a tone and lit them up.
She only lit the box and turned the bear on
in response to Grant’s response and as a conditioning mechanism to get him to
respond to the tones if he could hear them.
We repeated the same process both with the headphones on and without.
She said he is hearing ok at normal talking levels
but isn’t hearing in his left ear below those levels.
We already had our 1 year appointment
scheduled with our ENT to have Grant’s tubes checked so at that appointment he
will be rescreened.
Our goal is to
determine if the hearing loss is permanent or temporary and now that we have a
baseline we will be able to see how things change over time.
She believes the most likely culprit is the
antibiotics but improper tube placement has also been known to affect hearing
and eardrum function.
It really brings
about tough questions of what is the lesser of two evils.
The day I publish this post Grant will have
96 days left on the medication but I am pretty darn sure that if we took him
off of it tomorrow the C Diff would come back.
It is incredibly frustrating as a parent knowing there is
something out there that has been proven to work more effectively than any
medication (
donor stool transplant)
but we have had great difficulty finding anyone who is willing to perform the
procedure on a child.
I have contacted
the Duluth Clinic in Minnesota who has physicians who have pioneered the
process and written numerous papers and they won’t touch a child.
Children’s hospitals in Milwaukee, Twin
Cities, and Chicago all are a no go as well as Mayo Clinic in MN.
We did make a little headway with Children’s in
Chicago who pointed us in the direction of a physician at University of
Chicago who
DOES perform them on children!
Dr. Stacy Kahn’s nurse just called me back
this week and said that she would be willing to see Grant, reviewing his case, and possibly
doing a stool transplant!
The doctor
wants to set up a clinic and after that has been done the nurse is supposed to
call us back and get us scheduled!
We are
so happy and hopeful that this could finally be it. Please say some prayers.
