Home of the Four Trans

Justin had a jam packed schedule on Thursday. Here’s what happened:

8:30AM: He woke up for his feeding, played, took a bath, dressed, and was stuffed into the car seat.

9:30AM: We left the house for the Neurology clinic near CHOC.

10:00AM: We arrived at the clinic. Justin watched some older kids play on a table toy, ogled a smoothie and smacked his lips as he watched the 9 year old girl sipping it.  We engaged in some conversation with the little girl and her mother about Justin’s chubby cheeks and their medical conditions (she has Cerebral Palsy and had experienced 2 episodes of seizures in her lifetime. Scary!). Justin kept smiling and waving his little hand (he’s learned how to wave “hi” now).

10:20AM: We get a spot in the examining room. Justin was weighed (17lbs, 4 oz on a digital scale with clothes, splint, and diaper on) and measured (26.5″). I mentioned that that the measurements at the pediatrician’s was different, but that it’s different wherever he goes. So, close enough, I guess. Either way, he hasn’t grown much.

10:30AM: Neurologist walked in. She asked if anyone was concerned with how small he is for a 12 month old. Well, I’m concerned, but his pediatrician doesn’t seem to be, and he doesn’t see cardiology until September. She said I should maybe talk to GI and a dietician to get him fatter. I told her that I expected him to be small, but I am more concerned that he’s not growing much. Will call GI. She assessed him, and these are the results:

• He seems to be cognitively on par for his age
• His hand seems better improved, but he still needs to continue with therapy
• He needs to see an orthopedic surgeon for his right foot that seems to bend to too far to the right. The surgeon can decide whether to fit him for a brace now or later to keep that ankle in the right position. This will be used only when he’s in therapy learning to walk, or when he starts walking. I’ve discussed this with the therapists before and they thought he was too young. Having a brace on this early may hinder other muscle developments. Neurologist felt it would be more beneficial than not.
• He may or may not regain full function of his right side. She cannot predict this. But, he will definitely be left hand dominant, and his right hand will just be a helper hand.
• She would like for him to get an MRI to confirm the reason for stroke, but because he has a pacemaker in, this is not possible unless the pacemaker technology improves to where it will be able to tolerate the magnetic field.

11:45AM: We left the Neurology clinic to feed Justin in the car. He fell asleep while drinking because he was so tired.

12:00PM: We headed to a nearby Barnes and Noble to kill some time before having to head back to CHOC for physical and occupational therapy. I picked up some books, passion fruit lemonade tea, and a 2 square inch block of rice krispies marshmallow treat. Read a little and had a few moments of me time before heading to the line to pay for our things. While in line, I also impulsively grabbed 3 boxes of assorted Godiva for his therapists because we’ll be leaving them soon (boo!) for another program funded by the California Children’s Services (CCS), which is free. Justin continued to sleep in his stroller.

12:30PM: We left to head back to CHOC for his 2 hour therapy session. Little Boo didn’t even cry once.

3:00PM: I fed him in the car in the parking structure. He tapped the bottle with the plastic bottle cap, amusing himself while he gulped down the bottle…a whole 3 ounces.

3:15PM: While Big Brother Nathan was in the care of “Lifetime” (he was taken to “work”), this allowed us some time to visit Great Grandma (G-Ma) before having to pick him up.

3:30PM: Cried upon seeing G-Ma because he probably thought I was going to pass him over to another person, again. He just wanted some Mommy time. Justin sat in my lap, eyeing G-Ma, smiling, batting his arms, waving his left hand, scrunching up his face into smiles while we talked, then, finally allowed her to hold him. She was thrilled to be holding the little miracle baby. She encouraged me to pray, and to continue to believe. The fact that Justin is here, today, is already a miracle in itself, she reminded me.

4:45PM: We headed out during rush hour to pick up Nathan.

The next post will be about how he coped with this busy schedule!

This entry was posted on Monday, August 25th, 2008 at 4:04 am and is filed under Heterotaxy, Justin, Neurology. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.