Kidsability

My new hat and boots from Grandma,Uncle Brian and Paige

Mommy, Grandma and I packed ourselves in the car for another clinic assessment.  This time it was by the team at Kidsability.  Mommy used to do a lot of printing for Kidsability and was excited to see the new facility that just opened in Kitchener.

We were greeted by Kayla the social worker that has been appointed to my case.  She took us to a small room which had one big gym mat!  I was a little overwhelmed as mommy put me down to "play".  I had new surroundings and toys to look at and there were 3 new people.  The PT, Pam, the OT Lori and Kayla.  I was so disoriented that I started crying until Mommy picked me up and put me on her lap so I could look at each person individually to size them up and try to figure out what they were all doing staring at me.  Mommy and Grandma continued to answer their questions about my lengthy history and what I have been doing with my other therapists.  The therapists continuously made the comment on how alert, observant and perceptive I am.  Pam pointed out that my head is a very nice shape!  I was put down on the mat again were Pam and Lori played with me, rattles were placed in my hands and this strange long tube was making noise, after a bit I started to get a little agitated!  Then I was placed on my tummy and that was it!  I screamed and screamed and screamed.  Mommy was heating up my food so Grandma tried to calm me down, but I was having nothing of it.  I screamed and screamed, my face was turning red and I wouldn't stop.  I was passed to Mommy who quickly excused us and walked down the hall singing Katy Perry, I immediately calmed down... I just wanted to hear California Girls.

After I had calmed down I was placed in a yellow bumbo seat and the therapists continued with their assessment. 
Pam mentioned that my motor skills were consistent with a 2 month  old (which we knew already with Dave's assessment of the 10-25th percentile from Infant Development).  However, she couldn't get over how observant and alert I am.  Lori agreed with mommy and grandma saying my arms are weak but once someone places my arm my hands and fingers are actually quite good.
Pam also said that I would likely be the kid that plans strategically on how I am going to do things, she said that this will be a good thing as it will help me when trying to learn gross motor skills.

I freaked after a while sitting in the Bumbo and mommy grabbed me and rocked me to sleep while feeding me.  The conversation continued.  I will be placed near the top of the waiting list as "high priority" and my mommy will be called with an estimation of the time it will take to get me in to the facility.  Grandma wants to take me to the swimming pool that is in the Waterloo facility, however they were unsure if we can use the facilities there. 

In other news:
- Mommy got a quotation for my syringes $2500 a month!  I will need to get a full time job just to pay for them!  Looks like we will need to continue to wash and reuse them, however we can get it down to $1250 a month by reusing them. Ahhh syringes!!

A mommy's worry

When I was contemplating having a baby, everyone told me babies are a lot of work to look after and that life as I knew it would not be the same.  I joked around that date nights and days that we would chill with friends playing video games would be over.  When I found out I was pregnant, I was terrified. I had figured it would take more time, and the reality hit me like a brick wall. How was I supposed to become someone's mom in just 9 short months? People would talk to me about parenting and what I should do when... That there is no better feeling than to be a new parent.  What they neglected to tell me was, what do I do when my baby is terminally ill? What do I do when the doctors tell me that when I finally leave the hospital, my baby will not be with me? What do I do when the doctors tell me my baby will die within a few days? What to decide when I am asked whether or not I want my baby to have life saving procedures when he deteriorates? These are the things that I should have been told. 
No parent should be in that situation yet I find myself here. Luckily my baby is stronger than I am, and gave the middle finger to me and his doctors and somehow found his way home. The feeling of not knowing what is causing him to be this sick, trying to answer people when they ask me why the doctors haven't figured it out yet, what's wrong with them? His case is not so black and white. When I was in school I learned enough of biochemistry enough to pass the exam and then promptly forgot what I had so madly tried to cram in my brain because I thought I would never use it after that.  Maybe I should have had a biochemistry degree instead of a sociology one. Oddly enough it would have been more useful in my everyday life, funny how that happens.
I worry that he will not get to enjoy the foods that we have taken for granted. I feel guilty when I sneak a drop of Similac Advance on his tongue so he can taste what I am pushing into his belly. I worry that he will never know the feeling of being hungry, and the satisfaction of finally getting to bit into food, feeling it roll down his throat and always entering into his digestive tube on the way to his tummy. I worry that he will never feel how refreshing it is to drink a gallon of water on a hot humid day. I worry that I will be in the hospital with him getting his tummy tube replaced after he's ripped it out. I worry what time of day that will be, before a feed, during a feed, after a feed.. how many calories will he have, will he have enough so that his body doesn't shut down. I worry that he'll never sit, walk, roll, hold his head up, run, or jump. I worry that he won't be able to learn, talk, see or hear. I worry that one day one of his organs may just explode. I worry if he gets a cold, will it cause him to go to the emergency room, or worse. I worry that he will choke just laying on his play mat. I worry that he feels my fears for him. Most of all I worry he won't wake up.
Before I go to bed every night I kiss him tonight and whisper in his ear, "Sweet dreams my little one, please wake up in the morning". I toss and turn until the morning when my husband walks into the room holding our son, I frantically look to my son's eyes, they are open, he is saved for another day.
-Ethan's mommy

Infant Development

Mommy, Grandma and I had our first appointment with Dave from Infant Development.

I was having a late nap when he dropped in to see me. In the meantime he had mommy fill in an assessment that asked questions pertaining to the development of a 4 month old.  My overall assessment was ranked at the 10-25th percentile.

I woke up and I was put on a mat so that Dave could observe my "play" and he ticked off the positions I was doing on a chart.  (Prone, supine and side lying).  This gives him a baseline of what I am doing presently in those positions.  He brought a bag of toys and took out a weird horse ring with a turny string to monitor my tracking skills.  He let me hold onto miniature maracas, I liked these as finally I could hold onto something in my small.. yet manly hands!

Dave will come by once a week, however next week he is fully booked so I will see him in 2 weeks.

My feeds are now up to 140 mls every 4 hours.  I am spitting up on every feed though, so we think my anti-reflux meds need to be increased, however my pediatrician is off until Tuesday!  I am trying to make it up to my recommended feed volum of 150-160e, but it's been hard with my spit ups.

Dr. Tarnopolsky's office informed us that the government has approved the funding for the mtDNA testing, so the results of that testing should be back in about 4 weeks.

In other news, apparently I am learning cause and effect relationships as I will just cry to see if my mommy comes and gets me.  She does, but I think I am driving her a little crazy, I am 4 months old and it's how I learn.

Grandma gave me my first ABC book!  I love the colourful pictures and I try to turn the pages, somewhat fumbly while grandma reads with me.

Mommy and Grandma are going to the psychic fair tomorrow for some fun!  Hopefully these psychics say some nice things about me!  Mommy will have an update on the weekend about this!

More Questions.....

I had just woken from my nap when my OT and ST came to get me.

OT:  I didn't move a whole lot as I was still groggy from my nap.  However Cheryl sat with me and said that my progress was slow but it was coming along for head control. Then it was on to my Speech Therapist.

ST: As you know, I had been practicing swallowing sterile water from a spoon.  Mommy had been noticing that I would cough sometimes, but not all times with the water trials.  Laurie told mommy to do the trials then with her there.  One... two... went okay, then on the third spoon I had a HUGE coughing fit, where my face turned red and my eyes started to water and I practically hacked up a lung and continued to be throaty for minutes after... thus ending all water trials until I can be seen by someone who can monitor my lungs with Laurie.
Good luck mommy turned down the follow up swallowing test that was supposed to be scheduled this week... Laurie agreed with her decision after my performance and said she wasn't going to recommend me until we get a good run at the trials here.... No "drop zone" seat for a while for me... maybe I'll actually fit into it then.

PT: Cathy brought some toys for me to work on my head control.  Mommy mentioned that I had lifted my head on the weekend and then I hadn't even tried for a few days.  She also mentioned that I had rolled onto my side on my mat the night before!  Cathy said that it wasn't unusual that infants "forget" one thing and then move onto another thing, then will go back later to the first thing.  She also mentioned that when infants begin to roll, they choose "their" side, then they figure it out and will eventually roll to both sides... so we should not be alarmed if I always goes to one side.  I didn't lift my head with her on the mat, however I did well on the exercise ball with my head balance and on the tummy mat she had brought with a soft pillow that goes under my arms.  She noticed that my back was getting stronger and I punched woof dog with my arm while on my side.  She was really happy with the progress I had made since last week.

PT: Practicing my "rolling"

Blood work:
pH: 7.43
Lac: 3.1

Weight: 14 lbs  (I have graduated to diapers 2nd stage!)

Play date: I had a play date with a boy named Marshall this week, he is 9 months old.  I just watched him as he played and shimmied around.  I also didn't think my kitty cared about me, but she was hissing at the other boy.  So I guess it means she doesn't mind me.

Infant Development: Mommy, Daddy and Grandma had an appointment with Dave from Infant Development.  He will be coming to visit me to help me along.  He does everything, however I have a bunch of other therapists, so he said that he will concentrate on my cognitive skills more, as everyone else is focusing on my motor skills.  There will be a quiz next week, to assess how I am doing at 4 months. This will compare me to the standard and also to get an idea of my baseline.

Dietician: We updated Amy on my weight and she is increasing my feeds to 150-160 mls a feeding!  I am currently on 125.... no wonder I am a grumpy beast.

Dr. Tarnopolsky: On to the final news of this week.  Dr. Tarnopolsky informed us to cut my copper med volume by 50% as my zinc results were low.  We haven't received any of the results of the mtDNA or the other one they are testing (I forget all their names now)... testing is being held up by the government as they haven't approved the funding for my tests yet. However, Dr. Tarnopolsky said that there has been a striking occurrence in the previous results of a high amount of glycogen in my muscle tests.  So if the mtDNA comes back negative he will start going down that road... However, this result is inconsistant with complex IV deficiency... so what he was sure about me.. that I have a complex IV mitochondrial disorder, may not be the case... More questions than answers.  I have always kept these doctors on their toes.

If anyone wants to know what my evenings consist of, I usually chill out on my playmat and occasionally watch a Hell's Kitchen episode with Mommy and daddy.

Practicing bearing weight

The Month of August in a nut shell

It’s almost been a month since my last update.  Many and a few things have happened.
2nd OT appointment:  I was more lazy than normal during my assessment; however Cheryl did comment on having a bit better head control as she held me while I sat. I am still not lifting my head when laying on my tummy.  She gave mommy a few new exercises to help me bear weight on my legs in addition to the exercises for my arms and head control.

NUK brush

Speech Therapist: After much fighting from my mommy, I finally got an appointment with Laurie, my speech therapist, who unlike her title has nothing to do with the spoken word, she focuses on feedings. So, my swallowing issue.  My mommy and grandma got in trouble for giving me little “shots” of formula from a syringe into my mouth.  This can cause infection if it goes to my lungs, and since the swallowing study showed I am a silent aspirator it is hard to know when it goes to my lungs.  My mommy explained again that I was to have a follow up swallow study before I turned 4 months and since she hadn’t seen a therapist to tell us what to do, we had to come up with something.  Laurie suggested I try some sterile water from a spoon.  I seemed to do well and Laurie was happy with the trial.  My mommy was told to continue with this 5 times a day of 5 spoons of 1ml each sitting.  In addition Laurie introduced us to “Nuk brush”.  This is an instrument that is used on my cheeks and lips to get me used to having different textures on my face, so the idea is I won’t become adverse to food in my mouth when I am able to swallow without danger.  The Nuk was left with Mommy and is added to our homework schedule.

Physiotherapist:  I am on the wait list for Kidsability however the wait list is unbelievably long, so until I get accepted I have a physiotherapist that comes to see me, Cathy.  Our first appointment was last week.  She assessed me, and commented that my head control looked like it was coming along, even though I still do not lift my head.  I was a little more active than I had been with my OT.  Cathy gave us some more homework for helping me roll and reach for toys.

Pediatrician: My pediatrician agreed that my arms are on the floppy side and my head is laggy when she pulls me to sit. However I had just gotten my blood work done and wanted a nap, how could I perform at my best under those conditions? 
                         Blood work:
                             pH: 7.40
                             Lac: 3.8

Other Notes:
-I lifted my head a smidge yesterday on my tummy… a few cm but it’s something!

-I can bear weight on my legs for a few seconds.. which is better than just collapsing!
-Mommy purchased a Bumbo chair to help with my head control, I love it!
-I love watching Pocoyo. It’s a Spanish kids show, which my mommy has found in English
-I love listening to Katy Perry, she is my current girlfriend
-Grandma P. gave me a mouse that has super long ears and I love biting him

My first Bumbo!

-Special thanks to my Uncle Jan who has picked up and delivered my meds to me on 2 desperate occasions!
-I have graduated to 3-6 month clothes!

Practicing Head Control

Special note: Please send your thoughts and prayers to my buddy Emerson, who had to be rushed to the hospital in Sudbury this week.  He was in the process of being weaned off his anti-seizure medication to see if he had outgrown his seizures.  He had 2 seizures, and it is looking like there is an underlying condition, his doctors have increased his meds.  Emerson is getting stronger by the day and is meeting his milestones in stride, this was a complete blow to his family who were hoping that his seizures had disappeared.  Please give them strength through this difficult time.

Photo shoot

Check out Ethan's photo shoot with Emerson by: Jennifer Ings-Wessels:

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