Ethan Clinic #2

Hi all,

On the way to MAC

Ethan again.  Tuesday's trip to Mac was fantastic!  My mom and grandma Philp took me down to see Dr. K and Amy.  I had practiced all my special assignments, and this time we were going to make them proud! 

When we arrived we asked about the results of my skin tests.  Nothing in just yet.  Mariya's take on me is I am stabilizing because I am eating so many calories and my current diagnosis remains as "primary lactic acidosis" until a real result comes in.

Then my assessment began... My performance was great!
Mariya asked me if I knew my mommy.  I didn't answer but instead I looked at mommy who was walking around the room behind her and this was answer enough for the doc.  Mariya then took off her glasses as she thought they scared me.  Her and I then had a nice chat and I smiled tons!  Amy said "He's going to be a lady killer!" Mariya "I already love him!"  After we chatted, Mariya complemented me on my improved head control and mobility in my arms, she liked that I was tracking better from side to side and top to bottom.  This trip made her much happier as I was doing significantly better than my previous visit, complements to my personal trainers mommy and grandma Philp!  As my assessment came to a close, Mariya said "You better take him away because I will kiss him all over!"


Next we took down my growth stats.  My weight is now 11lbs 2oz... Wait.. What's that?   Mariya, who had just sat down nearly killed herself springing back up from her chair with joy.  I, Ethan Reimer, have registered above the 5th percentile on the infant growth chart.  This little fighter who couldn't make it past 3.05kg while in the hospital was a big boy now!  My length is now just shy of 23 inches. 

With a general happiness floating through the room, the talk turned to my homework for the month.  I'm supposed to keep working on my arms and continue to eat as much as I can.  Eating lots will allow my brain to grow big and strong as so much of my learning happens before I turn 1 year old! 

Next up, my legs.  Mariya said to me "What should I tell your mom to do with your legs?" Mommy asked, "What's wrong with his legs?".  Mariya replied, "nothing, but next month's the legs and feet... Put formula on his feet and bring them to his mouth".  What? Pardon?  First, that sounds kind of gross.  Second, those of you who know my mommy well know she has a fear of feet.  She looked at Mariya in HORROR!  She explained "but... I have a fear of feet."  Mariya asked why?  Mommy told her "they look at me in a creepy way!"  This may be more daddy's and grandma's job in the weeks to come.

Mommy mentioned that I already have a lot of leg movement and usually go crazy with my legs, I just wasn't bringing my "A" game today.  Mariya said "He will be a dancer!" and mommy said, "yeah, probably a river dancer!"

The Plan:
Mommy asked if I can be changed to every 4 hour feedings. Mariya said "Yes, you wouldn't be asking me if you didn't think Ethan could".  As such, we have changed to 6 feeds from 8 and now have more time between eats to play, live, learn, and go on outings in the real world.  Grandma asked about my blood work and if Mariya was thinking to change it to every couple of weeks.. Mariya did one better and said "I was thinking once a month" providing I was still good this week.  Once a month?  That's awesome!

I have my next clinic in September, sounds like lots of time to brush up on my skills and really show off my stuff when I see them next! Mariya is pressuring for a follow up swallowing study for me so I can start eating through mouth.  Oh the thought!

On to Wednesday, another trip to Grand River for blood work.  One of my regular nurses, Laurie, is on vacation this week! So my other nurse, Patty had to do the blood work.  She asked mommy if a photographer can take pictures of me and use it for hospital brochures and
the website, because I am so cute!  I was excited- I'm going to be famous!  What we didn't know is they meant taking pictures of me getting my head pokes done! Not my best look.  I was crying and generally looking unhappy.  The nurse gave a posed smile to the camera as to indicate that this poking business was supposed to be fun!  Not sure I agree.  Anyway, look for me in the next GRH brochures and website!

after 2 head pokes and an arm vein ... my results:

pH: 7.27
Bicarb: 23
Lac: 2.9

Not too shabby!  With number like that, I bet I'm not doing blood nearly as often now!  Looking forward to some extra time with my Dad next week as he is going on vacation from the office!

After bloodwork Mommy made a stop at the grocery store to start my modelling career

 

 

Introducing Sheryl: My Occupational Therapist

My OT, Sheryl, came to assess me for the first time!  Mommy was worried as she was coming by right at 1:15 and I start my feeding at 1.... However, she was smart and gave me about 30mls before my appointment so I wouldn't be upset or puke.  Also I had been awake for some time playing before my new friend came to see me, so mommy and grandma were worried that I would be too sleepy or even asleep when she came by.

I was starting to get a little cranky before Sheryl showed up, however I was attentive when Sheryl started talking to me... Of course she told me how cute I was before diving into my exercises... which helps me to show off my stuff!

She put me on my play mat and watched me for awhile.  At the beginning all I wanted to do was talk... she is a new friend and I have lots of stories to tell her first!  She assessed my arms, head control, and legs, she rolled me onto my tummy and I had to show her that I was a good boy, and didn't complain!  She told Mommy and Grandma what exercises to do with me to strengthen my arms and neck. 

She says I have a bit of low tone in my upper body.  She says that strength starts from the head down, so once I get better head control, my arms and fine motor skills will follow.

She said that I am a social beast (as I wouldn't stop talking, smiling and laughing).  I wouldn't let mommy talk to Sheryl as I had many things I wanted to say and wanted the attention to be on me again! Sheryl said that I am excellent at tracking, focusing and observing.

45 minutes later Sheryl scheduled her next play visit with me (August 9th) and went on her way, I fell asleep as soon as I heard the door shut!

Blood week 4

Blood Clinic Week 4:

I was supposed to get Lactate, Blood Gases, Copper level and Zinc level

Two head pokes and I only had enough blood for the lactate and half full for the blood gases... however they ran the blood gases anyway.

Scalp Vein done:

P.H: 7.73
Bicarb: 20
Lac: 2.8

Weight: 10 lbs 7 oz

Dr. Kozenko told mommy that she believes the PH is wrong as the Bicarb is 20.  Nevertheless we are stopping the baking soda and we're seeing her next week for a follow-up anyway.

Mommy will try to get Daddy to take me Friday afternoon for the copper and zinc...

Stay tuned for my first OT assessment on Thursday!

Dr. T and the women

Hi all,

Ethan here!

Today we made the big drive back to Mac for a follow up with Dr. Tarnopolsky.  Our appointment was scheduled for 1:30 so dad left work around noon so he could drive with us and keep me company in the back seat.  I had a good snooze on the trip down so I was well rested for our visit.  Since the trip was right in the middle of my feeding time, my mom and dad brought along a bottle of the good stuff for me and had to warm it in their hands.  We arrived at Mac around 1:00, mom let us off at the door and parked the car.  Good thing she did cause it was really warm in Hamilton and I probably would have cooked if we had to walk from the other side of the street!

We checked in with dr. Tarnopolsky's office and waited patiently in the waiting room.  Dad continued to feed me small amounts to keep my tummy happy, but not so much as to risk unnecessary spillage from the mouth.  Around 1:45, we were called in to the clinic and we saw our old friend Dr. T.  He discussed with us a new paper he had read regarding the "Reversible Cox Deficiency" and said there were some additional tests that he wanted to run.  One of the tests was being offered by a lab in the states but it was still new and was not yet a pay for service test.  This meant that they are still looking for additional samples to run free testing on.  Dr. T had provided them with the details of my condition and they were excited to offer the opportunity for us to use their test!  Wow!  

Dr. T asked that we sign the papers for both an on-site lab test and the freebie from the US and mom and dad did so happily.  We were told that there might not be enough of me stored on ice to run all the tests and that I might need to have an additional muscle biopsy done.  We'll know more in a day or two but worst case scenario is that I'll have a matching biopsy scar on my other leg.  At least I would be symmetrical.

We thanked Dr. Tarnopolsky for his time and left the clinic.  The other reason for our visit was to pick up some prescription refills.  Unfortunately, as my prescriptions are somewhat complicated, they said we couldn't pick them up until 3:00.  By now it was about 2:15.  What to do at Mac for 45 minutes?    hmmm... Let's go visit people!

We returned to the third floor and zipped over to the Ronald MacDonald room.  Linda was there holding down the fort and was sooo happy to see me.  Dad let her hold me and we stayed and chatted for a few minutes.  She was happy to see me getting so big and commented on my chubbiness.  She reluctantly relinquished her hold over me and we continued on our trip. 

Next stop, Ward 3c... We walked toward the entrance to the ward and like a tidal wave, memories surged back.  What a time was had here.  We didn't know who we might find working today but entered assuming we'd find friends.  No sooner did we pass through the doors, but staring at us was the Kate the OT.  She came running over to see me.  She was happy I was growing and please to see that my mom and dad were on the outside looking in.  She told us to let her know if we like the OT we get in town and if not she'll help us locate a better fit.  She also mentioned that my followup swallow study had yet to be scheduled but she would keep us posted.  We thanked her and said our so longs for now.

As we progressed around the ward, there were a lot of new faces.  We made it to the back of the ward without seeing anyone familiar until we came across Sara.  She was one of my favourite nurses.  She was very insightful, friendly, resourceful and professional with us and the Rutledges during our mutual stay in Room 10.  She was also happy to see us and to see my progress.  We stayed for a few minutes to chat but had to keep moving as it turns out, the A/C was not running very well on the ward and it was soooooo hot I was sweating through my diaper.  We said our goodbyes and gave our condolences for the unbearable heat and left the ward.

It's alot easier to come and go when you're not a patient.

By this time it was 3:00 and we were ready to pick up the meds.   Dad and I grabbed my treat bag, mom hoofed it back to the car and picked us up at the door.  We made tracks back home and were back in time for next meal.  All in all a successful outing.

Tuesday, we're off to get the next bloodwork done.

Hoping for more great numbers! 

In other news, still no funny reactions to my immunizations!  YAY! I'm in the clear :)

Foreign substances IN???

Friday morning I went back to GRH to get my first round of immunizations (2 needles).  Mommy had begged my pediatrician to let me get immunized at the hospital instead of going to the family doctor.

Mommy and Grandma P. dressed me in sunglasses so I was 'incognito'.  Mommy stayed in the room and was asked to hold my arms down while my two nurses, yes I already have my regular nurses (Laurie and Patty) needled me in both legs, so they wouldn't have to needle me two separate times.  I was pretty good and only cried for a bit.  We stayed an hour and a half later to see if I would have an allergic reaction.  I didn't so we were good to go.  I was a little fussy that night and mommy said I felt a little warm.  Turns out my temperature was a little higher than normal (37.7). 

I got ready for Saturday and put my best party face on.  There were a lot of people coming to see me.  Yvette and Paula came first, they brought mommy and daddy Swiss Chalet for lunch and an apple pie.  In came my uncle Jan, who was going to make us homemade burgers for dinner!  My aunt Jackie, uncle Bob, big brother Greg, bigger brother Sam and auntie Katarina joined us.  They brought pie, cupcakes and salad for our festivities.  I also received a robe I can wear when I become a big boy and a hippo rattle from Katarina.  New exercise clothes from Jackie, Bob and the boys.  In addition on Thursday my uncle Brian had dropped off an elephant rattle to help me with my arm exercises.

The day went well and everyone was really nice to me!  I got to spend a lot of time with people other than my parents and I wasn't scared at all!

I still have a bit of a temperature so we'll keep up with the Tylenol.  We go to MacMaster on Monday for my first clinic checkup with Dr. Tarnopolsky.  He may have some results ready, but we are doubtful as he had told us 6 weeks from when we left Mac.

I still haven't seen my OT, due to the blood fiasco, but the appointment is scheduled this week.  I am putting my hands together to my chest and near my mouth, so that part is completed!  I still hate tummy time and can't lift my head yet.   

Grand River Hospital a.k.a. the torture chamber

Hi all,

Ethan here.  Lots has happened since last we spoke.  So let's get right down to it!

I was supposed to have a play date with Emerson and on Friday night.  But that little bum got himself a cold and couldn't come.  As a substitute, aunt Christiane and uncle Andrew came in his stead and brought presents.  They dropped off a bassinet and lots o' clothes.  Mom and dad gave them a tour of our home and Christiane held me for most of their visit!

One sleep later, and we're on to the weekend!  This weekend was particularly important as I grew out of my pampers newborns and now I wear size 1!  For those not in the know, the weight range for #1 is 8 to 14lbs.  In addition to new diapers, I was invited to my first barbecue at Grandpa and Wayne's house.  Also in attendance were Grandma and Grandpa Philp.  The event spanned two feeds, a first for me!

As the weekend came to a close, one more big event.  My dad rigged my crib up to incline 35 degrees (using a couch cushion) so I can sleep there overnight without worrying about my acid reflux problems.  This means I no longer sleep in my parent's bed.  I HAVE MY OWN ROOM NOW!

... Enter bloodwork attempt number one (Tuesday)

I was scheduled to see my pediatrician today for an updated weight, vitals and bloodwork.  The pediatrician came in to see me and said my vitals were good.  My weight was taken and I was 9lbs 12ounces.  If you recall, just last week I was 9lbs 1 ounce and thus have gained 11 ounces! 

BlooDwOrk.....!.!.!

The nurse came to try to get blood which resulted in 3 head pokes, a STAB in the foot and a STAB in the arm both with no tourniquet.  Thos of you with intimate knowledge of veins, this is hard to do on an adult, and IMPOSSIBLE on infants.
Result: no blood. 
Result: I cried for over an hour during and after the event.
Result: Grandma Philp watched it all and almost fainted.  Mom was crying and yelled "NO MORE!  The results will be tainted!"  and it was decided that I would come back again the next day.
Result: I cried so long that with my swallowing issues I was gurgling and breathing like a bad FM radio station.  Mom thought I might have aspirated and asked that the on call pediatrician come assess me.  During this fiasco, I was supposed to be assessed at home by the local OT but as I had recently undergone a rigorous round of torture, this was not going to fly.  The assessment will be rescheduled.  The on call pediatrician came in and said I sounded clear and didn't want to submit me to further radiation from an X-ray.  He was very interested in my case as he is a hematologist. 

Bloodwork attempt number two (Wednesday)

So I was scheduled to return to the hospital for another try at the old vein poking.  The nurse suggested that in preparation for my visit, I adorn a toque to warm up the old noggin and get the blood flowing.  As many of you know, I am already a sweat monster and the addition of a winter hat only accentuated the beastliness.  However, one successful head poke later I had filled two vials and I was done!

Result:
Ph:       7.45
Bi-carb  23
Lactate  3.1

Booyeah!

My first "visit" to Mac

Tuesday my mom, Grandma and I took the trip down to Mac.  However, this time it was for my metabolic clinic appointment with Dr. Kozenko.
Her clinic hours are not on Tuesday, but she met us for "Ethan Clinic" with Amy (my dietician) and one of her students.  This way she could spend an hour and a half with me!

Things to note:
- My skin tests have not come back, but she believes that the result will be back within the next 3 weeks (before my next follow up)
- I am ahead on my communication skills
- I am a bit hypo-tonic
- She will send a note to Dr. Tarnopolsky about my contaminated copper test
- We need to up the dosage of my meds due to my weight gain
- She believes that my actual lactate level is 3.5 (which she says is still high for me)

My homework for the next 3 weeks:
- To smile at Dr. Kozenko
- To suck on my hands
- Tummy time to strengthen my neck
- soother dips and smear formula on my face and hands

The Plan:
-My mommy will show me pictures of Dr. Kozenko so I can smile at her pictures.. then transfer that to real life... I was just so overwhelmed by the dr.s office!
-My mommy has been singing patty cake to me trying to get me to notice my hands... My Grandma has been stuffing my hands in my mouth during play time.
 -I have been on my tummy 3 or 4 times since Tuesday and I hate it!

Blood test results: Week 2

2nd weekly blood test results:

PH: 7.29
Lac: 6.3

Tourniquet was used again.  Next week if the right nurse is there they will do a scalp vein.....

Weight: 4.16 kg (9 lbs 1 oz)

Tomorrow I go to my first Metabolic clinic at McMaster.  Will keep you updated!

Update on my development:
I have been talking up a storm since last week
I can bat at toys that are above me to make them move
I can laugh when I am in a good mood

My first night in my "Big Boy Crib"