Thanksgiving Catch up
Almost another three months have passed since I last posted anything. Like has been crazy busy here in Aislinn's world and it all hasn't been good. Aislinn has adjusted to the long school day. Most days she might take a 10 to 15 minute nap in school and thankfully they allow it but when she comes home she has a hard time staying awake thru dinner & bath time and sleep by 6:30. Most nights she is in bed before Andrew gets home from work. On the nights I bring her back downstairs after her bath (cause I know Andrew will be home in a few minutes) she takes herself back up the stairs to her room & shouts for me from the door way, I go up and she is standing at the crib looking to climb in. On September 10 we participated in Long Island walk for Epilepsy. We raised close to $400. and had a beautiful morning for the walk afterwards we ran to Rachael's Field hockey game for a bit then left for the city. There was a memorial mass for my parents and then it was off to dinner with my Godmother. I was nervous being in NYC on the weekend of the 10th anniversary of 9-11 but the ride in & home plus the drive in the city was pretty easy even with all the police presents.
Aislinn & I made it to everyone of Rachael's Field Hockey games this season. I can't believe that this is her last year playing Field Hockey. It was kinda sad to watch the last game (Since 2003 I have been watching 1st Micheal then Rachael play the sport) Connor made JV football this year so Saturday mornings (and 1 Friday night) it was watching Goober & the the JV have an undefeated season!
On September 17th Andrew & I had our 30th High School reunion. I was really looking forward to going and reconnect with old friends. It was held at the Irish Coffee Pub(luv that place) and it was a awesome night. A whole weekend was planned (football game, tour of our old school, drinks Friday night & brunch on Sunday)Most of the planning was done thru Facebook to help keep the cost down.Say what you want about FB but It was truly great to reconnect with everyone on line then to see then again on that night was priceless.
In the beginning of October Aislinn saw 2 new Drs. Not totally happy with her neurologist(Dr D) I called NYU to see how long it would take to get an appointment with an Epileptologists (this was 10-5 @2pm) I was told "how does Friday October 7th @ 2pm sound?" (it took me 2 months to get our 1st appointment for the neurologist we had been seeing)I took it, called Andrew to let him know he needed to take the day off to go with me( I have no problems taking Aislinn to her Drs appointments but the one place I do NOT drive is Manhattan! So on Friday morning we set out to the city, made it in with no problems and was filling out our paperwork @ 1:30. At 1:45 we were shown to a exam room & 2 minutes later a man popped his head in, introduced himself (Dr R) and said he would be right back, he was & stayed with us for the next 90 minutes (when Dr D met with us back in May we waited in an exam room for 90 minutes then she breezed in & out in 20 minutes) talking to us about Aislinn, her adoption, her epilepsy and asking about us, our lives. When Dr R steeped out for a minute to get a pamphlet for us Andrew turned to me and said, " We are staying with this DR and I will take off on the days she needs to be seen by him")We left there with an appointment for January and very happy with our decision. A few days later I took Aislinn to a pediatric orthopedic because some concerns were made as to her unsteadiness as she walks. The Appointment was about an hour away and with long island traffic being what it is I left 2 hours before the appointment time & walked into the office with 3 minutes to spare! After the exam, x-ray and having Aislinn walk around for him (in just her diaper) I sat with the DR and he told me she is PERFECT, she is just a little girl who is learning late how to walk & carrying about more weight then a baby who is just learning to walk and to bring her back in 6 month.I left there happy with what was said but apprehensive about one word he said. It was the word PERFECT. I don't like the word and it u usually is followed with something bad ( or that is how it seems to me) On the Saturday following the appointment Rach had a A game so while Aislinn was napping and Andrew was outside working on the yard I ran to her game a few towns over (a 10 minute drive) While watching her game my cell rang it was Andrew "Aislinns having a seizure & isn't coming out of it" I left the field quickly and was home in under 5 minutes. Aislinn was laying in Andrews arms, saw me said hi. I got the thermometer to take her temp (99.6) and layed her on the couch where she fell asleep. 15 minutes later, she awoke with a scream, stiffened & had another seizure. It was over quickly and she fell back to sleep till 4pm. When she got off the couch, she seem fine, like nothing had happened (its the first time we have ever had two seizures in a day ( little did I know what the next hours would hold for us). about 5:30 she started to get cranky, so I gave her her medicines (in case she fell asleep again) and @ 6pm she was out cold (again on the couch cause I didn't want her out of my sight)She had 8 more seizures thru out the night. The next morning when she awoke & tried to get off the couch (she was up at 5am but didn't look to move till 8am) she couldn't walk and was having a hard time standing. I called the NYU and spoke to the Dr on call (it was the 4th time I had spoken to him in the past 12hrs. He said to take her to the ER. So off we went to Good Sam, blood test, temp of 102.3(she had been getting Tylenol or Motrin every 4 hours since 2pm the day before) X-ray & an EKG (her heart rate was bouncing all over 90-178) IV fluids and a diagnosis of a viral infection. We kept her out of school for the week because she was so weak.Dr R changed her dose of meds and sen me a script to have her blood tested in a few weeks. On October 30 we were back in the ER with Aislinn (saw the same ER DR from two weeks ago) Aislinn was having a hard time standing I(no fever or seizures) just walking like she was drunk very unsteady on her feet. I called NYU again and was told have the ER check her levels sounds like she was toxic (she was). After 2 hrs there we were released. Aislinn had a great Halloween. There was a parade at her school with a little party then when we got home she went out with Uncle Mike & cousins Saorla,Fianna, & Seamus for a hour around the block & got a slew of Candy.Aislinn has had 4 more seizures since then. We are trying to find the right dose of medicine for her.
With all this going on what do I decide to do? Sell Tupperware! Aislinn's medical bills plus medicine are kicking our butts so to earn some extra income but still be available on a moments notice in case she has a seizure at school or is sick this seem like the best fit for us. Now anyone who knows me is probably laughing their arses off because I am the quietest person of all my friends. I'm the one at a party who is flitting from group to group, listening but not speaking to anyone. So this should be a challenge. I did well my 1st month of sales but the true test will come from it I can keep it going. Getting up in front a group of people is way outside my comfort zone but I keep saying to myself, This is for Aislinn!
Hunter & PJ were christened on November 13. The church was a ceremony (so it was quicker & cooler then Aislin's was) and it was followed by a really nice family party.
I hosted Thanksgiving once again this year but instead of my family this time it was Andrew's. Our nephew Matthew is going to school in NYC so Andrews parent are coming down from Upstate & Diana & her gang are coming from Maryland. Matthew called and asked if he could bring a couple of friends also for Thanksgiving. I said of course (good thing Andrew brought the camper back home last week). Aislinn enjoyed her 1st Thanksgiving with all the food (this kid can eat) there wasn't anything she didn't try. We are looking forward to Christmas with her to see what she thinks of all the lights & decorations. We decided not to put up a big tree this year but maybe a smaller one. Time will tell!
AS Always Be Good & Be Safe
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This is an account of our lifes as we head down the path of life towards our first child. An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break." --An ancient Chinese belief
- Name: Donna Mangia
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