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A DAY IN THE LIFE OF SPENCE J. VITALIANO!

[Spence]
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Spence

February 2010
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SPENCE'S DOING GREAT!!!

Jan 22, 2010 03:47pm (EST)

I know it's been a really long time since I"ve last posted anything on Spence. I guess I've transitioned to different technology to keep folks updated - Facebook. I use it regularly to post his pictures and updates friends and family on how he's doing. It also gives me better control of privacy option.

Here's the most recent great snap of Spence this past Christmas with Raquel - he's home, doing great and now in preschool. Wow how time fly's!

Feel free to look me up on Facebook on my personal e-mail for those of you that have my e-mail.


Spence & Raquel Christmas Day (25 Dec 09)
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4 DECEMBER 2008

Dec 04, 2008 02:29pm (EST)

Tonight we took Spence to an Army EFMP Holiday Party hosted my the Ft. Dix ACS. The Air Force doesn't do anything like this since their program folks that run these programs are managed by idiotic tools - yes I said it.

The event was small and not what we expected but it was something new I think and better than nothing. I think the children really were enjoying their time at some of the events. In Spence's case he was way too young and just not able to be aware of much. We had to leave before Santa arrived to hand out gifts because Spence was just not tolerating the increased noise level and was very sleepy.


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2 DECEMBER 2008

Dec 02, 2008 02:23pm (EST)

Well the tests showed Spence's eye movements, staring spells, rolling back & forth are all related to his Cortical Visual Impairment (CVI). However the neurologist opted to keep him on the seizure medication because his EEG was abnormal (like it always is) and he's at an extremely high risk of getting a seizure and they don't want him to get them.

So we scheduled a follow-up with Neurology to get to the bottom of the results and understand where to go from here. I'm not so sure the EEG gave us the clarification we were looking for or more questions - it's a toss up.
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1 DECEMBER 2008

Dec 01, 2008 02:16pm (EST)

Well today Spence was admitted to CHOP for a scheduled 24-hour video EEG to determine if what we're seeing with his eye movements are really seizures.

When they put the leads on the air gun scares the crap out of him so he screams really loud. Noise really seems to irritate him so bad. I mean aluminum foil or plastics bags just put him into a fit of crying & screaming.


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27 NOVEMBER 2008

Nov 27, 2008 02:10pm (EST)

Time to eat! At grandma's house.


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26 NOVEMBER 2008

Nov 26, 2008 02:08pm (EST)


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21 NOVEMBER 2008

Nov 21, 2008 02:06pm (EST)

Today was Spence's Feeding Clinic appointment at CHOP. They are helping us formulate a plan to start him on oral feeds safely. The end result was he'll need a swallow study however, he's most likely ready. The Speech Pathologist worked some with Spence in a Tumble form chair and talked to us about some of our experiences with him. She gave us some information about a support group for children with feeding issues and allowed us to ask her questions.

The OT was there and she was able to get us an appointment with the Seating Clinic faster and she said he definitely needs OT.

The doctor also said she would make some recommendations to his GI for an alternate medication (in place of Reglan) for gastric emptying and a change in formula that breaks down better to also help him empty easier.

Then the nutritionist there said she would follow Spence and said we could cancel the future nutrition appointment while we await the swallow study.

Lastly the social worker for the feeding clinic spoke to us and gave me some information on the Family Advisory Board that I requested. It was a very productive appointment and I was again extremely impressed.


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19 NOVEMBER 2008

Nov 19, 2008 01:58pm (EST)


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18 NOVEMBER 2008

Nov 18, 2008 01:54pm (EST)

Spence got a loaner Kid Cart from NJ Early Intervention until he gets equipment from CHOP.


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Posted by Spence | Comments: (0) | Permalink
12 NOVEMBER 2008

Nov 12, 2008 07:01pm (EST)

Well 6 am and the Respiratory Tech informed us the testing was complete. Unofficially he said Spence may benefit from BIPAP rather than CPAP. He said Spence is having Central Apnea spells at night, he was able to get his sats to 100% by increasing his O2 to 1/2 liter of flow through the night. He told us to wait for the doctor to contact us and he expected that the doctor would want another sleep study to determine additional information. So now we're researching something new - seems like a constant thing with Spence. By the time he's a teenager I mine as well have went to med school - LOL!!

He had a uneventful day and isn't as sleepy today as he has been which is positive. The nurse practitioner from the neurology clinic talked to me about Spence's status the other night and about his seizure last week. She's concerned that if he stays sleepy until this weekend (which he isn't now) or if he has more seizures they may need to use another seizure medication. I asked her more about the EEG and how bad it really was and she said he was seizing up on every frame of the EEG test which was a 20 minute test. She said according to the EEG their was no way he could have been developing effectively since his brain was seizing so much. We've seen a significant improvement in his development, head control, trunk control, & attention span since they started him on the medication so I'm very hopeful for him.

Only time will tell - Spence is clearly getting the best possible care any parent could ask for. Thank God we're near CHOP.
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