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.
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| 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.
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| Practicing bearing weight |
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