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: