A bag packed for my mom, MacGregor, and myself. Two bags packed for Maddox.
What exactly do I think about when packing for U of M?
I tend to dress Maddox in the most stunning clothes and do this because the doctors downstate see many, many kids who have Down Syndrome and I feel as though sometimes they think becuase they have seen one, they have seen them all.
I need Maddox to stand out and have her needs be treated individually. In response to my questions, I often hear feedback such as, "Most kids with down syndrome end up with glasses. Most kids with down syndrome are hard to understand. Most kids with down syndrome can go to public school but wont graduate with a real high school diploma." The list goes on about what most kids do. The doctors tend to put my daughter in a textbook category but fail to recognize that while the diagnosis may be the same, the conditions associated with it are most definitely not.
What I mean is, let's say I tell my doctor I have a severe hearing loss and the doctor tells me that I need to position myself up front when in large crowds to hear presenters, I must use augmented devices like microphones attached to others when in a restaurant, flashing fire alarms, and a vibrating alarm clock. Yes, typically someone with a severe hearing loss would need these things. I don't. I can read lips so I don't need microphones. I have a dog that alerts me when the alarms go off and I have an alarm clock that slowly lights up to wake me and when that fails, and I have an awesome husband who serves as my second set of ears. My point is that diagnosis's mean nothing and categorizing a person based on a diagnosis is near criminal. Instead, I challenge the doctors to take time to learn about the individual, their needs, and what works for them.
So back to packing Maddox's suitcause... Each outfit is carefully picked, decked out with glitter and lace so she stands out. This way people will stop to talk to her and are dumbfounded when she.....ACTUALLY RESPONDS!
It goes like this, "Hi cutie, I love your dress."
Maddox stops and says, "Hi, thank you, yeah, pretty."
The people usually giggle in astonsihment that Maddox cares about her pretty dress. Once they realize this, they start the conversation, "What's your name?" I pray with all my might, the hours we spent working on this pays off and she responds, "Maddie." The adults usually say oh my, then you can watch the curiosity get the best of them and they want to know how old she is. Holding up a few fingers, Maddox responds, "Three." Then I get the smile, the look I have been waiting for and the, "Wow, she is doing really well."
Mission accomplished. Moving on!
One more person, one more heart we reached. One step closer to our mission of showing the world that Maddox can do anything that anyone else can.
Ok, now really, back to the suitcase. I must also remember to pack all of her medicines, vitamins, foot braces, IEP/school paperwork and completed medical questionnaires. Next, I review her appointment schedule and write down all the addresses. This is a unique trip because MacGregor is seeing the Otolaryengologist too, because of a cyst in his mouth. He also gets routine hearing tests because of his increased risk for hearing loss. So, our crazy U of M agenda looks like this.
TUESDAY
Drive to the Kellogg Eye Center at 7:30
8:00 Maddox Pediatric Opthamology
10:00 Drive to the Burlington Center
10:20 Physical Medicine and Rehabilitation
11:30-12:30 Carb load at the Olive Garden.
12:30 Drive to Mott's Children's Hosptial
1:00 Maddox Hearing test
1:45 MacGreagor Hearing Test
2:30 Maddox Otolaryengology
3:15 MacGregor Otolaryengology
WEDNESDAY
9:00-12:30 Neuropsychology
I also have to remember to pack sippy cups, diapers, wipes, extra outfits, and snacks too. Because the kids need a positive experience, I always book a hotel with a pool which means swim diapers, floaties, and swimsuits for all of us. (FYI for all you parents out there, always always ask your hospital if there is a hospital rate. I have been blessed to have this financial accommodation.)
For the car ride, gotta make sure each kid has a backpack full of their favorite toys and the absolute must remember to pack is the latest Elmo and Barney movie collection. The night before I go, my car is filled up with gas and throughout the night I wake up in a panic wondering if I have forgotten anything - - - like my phone charger!
Once at the hotel, unloading the car with two kids literally fills the luggage cart.
What exactly do I think about when packing for U of M?
I tend to dress Maddox in the most stunning clothes and do this because the doctors downstate see many, many kids who have Down Syndrome and I feel as though sometimes they think becuase they have seen one, they have seen them all.
I need Maddox to stand out and have her needs be treated individually. In response to my questions, I often hear feedback such as, "Most kids with down syndrome end up with glasses. Most kids with down syndrome are hard to understand. Most kids with down syndrome can go to public school but wont graduate with a real high school diploma." The list goes on about what most kids do. The doctors tend to put my daughter in a textbook category but fail to recognize that while the diagnosis may be the same, the conditions associated with it are most definitely not.
What I mean is, let's say I tell my doctor I have a severe hearing loss and the doctor tells me that I need to position myself up front when in large crowds to hear presenters, I must use augmented devices like microphones attached to others when in a restaurant, flashing fire alarms, and a vibrating alarm clock. Yes, typically someone with a severe hearing loss would need these things. I don't. I can read lips so I don't need microphones. I have a dog that alerts me when the alarms go off and I have an alarm clock that slowly lights up to wake me and when that fails, and I have an awesome husband who serves as my second set of ears. My point is that diagnosis's mean nothing and categorizing a person based on a diagnosis is near criminal. Instead, I challenge the doctors to take time to learn about the individual, their needs, and what works for them.
So back to packing Maddox's suitcause... Each outfit is carefully picked, decked out with glitter and lace so she stands out. This way people will stop to talk to her and are dumbfounded when she.....ACTUALLY RESPONDS!
It goes like this, "Hi cutie, I love your dress."
Maddox stops and says, "Hi, thank you, yeah, pretty."
The people usually giggle in astonsihment that Maddox cares about her pretty dress. Once they realize this, they start the conversation, "What's your name?" I pray with all my might, the hours we spent working on this pays off and she responds, "Maddie." The adults usually say oh my, then you can watch the curiosity get the best of them and they want to know how old she is. Holding up a few fingers, Maddox responds, "Three." Then I get the smile, the look I have been waiting for and the, "Wow, she is doing really well."
Mission accomplished. Moving on!
One more person, one more heart we reached. One step closer to our mission of showing the world that Maddox can do anything that anyone else can.
Ok, now really, back to the suitcase. I must also remember to pack all of her medicines, vitamins, foot braces, IEP/school paperwork and completed medical questionnaires. Next, I review her appointment schedule and write down all the addresses. This is a unique trip because MacGregor is seeing the Otolaryengologist too, because of a cyst in his mouth. He also gets routine hearing tests because of his increased risk for hearing loss. So, our crazy U of M agenda looks like this.
TUESDAY
Drive to the Kellogg Eye Center at 7:30
8:00 Maddox Pediatric Opthamology
10:00 Drive to the Burlington Center
10:20 Physical Medicine and Rehabilitation
11:30-12:30 Carb load at the Olive Garden.
12:30 Drive to Mott's Children's Hosptial
1:00 Maddox Hearing test
1:45 MacGreagor Hearing Test
2:30 Maddox Otolaryengology
3:15 MacGregor Otolaryengology
WEDNESDAY
9:00-12:30 Neuropsychology
I also have to remember to pack sippy cups, diapers, wipes, extra outfits, and snacks too. Because the kids need a positive experience, I always book a hotel with a pool which means swim diapers, floaties, and swimsuits for all of us. (FYI for all you parents out there, always always ask your hospital if there is a hospital rate. I have been blessed to have this financial accommodation.)
For the car ride, gotta make sure each kid has a backpack full of their favorite toys and the absolute must remember to pack is the latest Elmo and Barney movie collection. The night before I go, my car is filled up with gas and throughout the night I wake up in a panic wondering if I have forgotten anything - - - like my phone charger!
Once at the hotel, unloading the car with two kids literally fills the luggage cart.
Fast forward to our appointments. How did they go?
Maddox's vision and depth perception is great although she is going to need tubes placed in her tear ducts. I opted not to do it right now, but to wait until she is under for another surgery and will tie the two procedures together.
Physical Medicine and Rehab said her foot braces are not doing a thing and we need to schedule an appointment with the orthotist to have them remade.
Maddox is complaining of right ear pain and her audiogram showed diminished hearing on that side, just outside of the normal range. The left side is normal. Her typmanogram did not move like it should for the right side either. Antibiotics were prescribed, possible ear infection. The good news is the tubes are in place and still working.
MacGregor on the other hand. He went down because of a cyst in his mouth and the otolaryngologist wants to cut it out in August. This was the result of his not so pleasant exam. The good news for MacGregor is that his hearing is great, a thousand times better than mine!!
Maddox's vision and depth perception is great although she is going to need tubes placed in her tear ducts. I opted not to do it right now, but to wait until she is under for another surgery and will tie the two procedures together.
Physical Medicine and Rehab said her foot braces are not doing a thing and we need to schedule an appointment with the orthotist to have them remade.
Maddox is complaining of right ear pain and her audiogram showed diminished hearing on that side, just outside of the normal range. The left side is normal. Her typmanogram did not move like it should for the right side either. Antibiotics were prescribed, possible ear infection. The good news is the tubes are in place and still working.
MacGregor on the other hand. He went down because of a cyst in his mouth and the otolaryngologist wants to cut it out in August. This was the result of his not so pleasant exam. The good news for MacGregor is that his hearing is great, a thousand times better than mine!!
That night we hit the pool and ordered room service. Two salads and two cheesecakes for 30 bucks and
look how big the salad was! It came in an Olive Garden bowl, crazy but delicious.
look how big the salad was! It came in an Olive Garden bowl, crazy but delicious.
The next day Maddox had her three hour test. She was very resistant and kept asking to leave to go potty. Guess the late night room service and full day of doctors appointments the day before was not the way to go for the most important test of her life which which would give us baseline cognitive processing data. This information is designed to give us Maddox's strengths so that her teachers next year can incorporate these in their teaching. With LOTS of treats, we got her through it. I felt a little like Pavlov training a dog to salivate when a bell rang. Basically we would ask Maddox to point to a picture and if she did this, she would get a sip of juice. The answer didn't have to be right, she just had to participate. We saw a true three year old tantrum at this appointment. I didn't know whether to be excited or scared! The results won't be in for a month and we will have a follow up appointment.
After this appointment my mom, MacGregor, Maddox, and I packed up and headed for home. We doctored, we shopped, we swam, and we ate like there was no tomorrow. My mom came to help with the trip to Ann Arbor but also stayed for the week. The next post will reveal the fun we had breaking all the rules.
The photo below I had to share, is MacGregor stuck in the table in the hotel.
After this appointment my mom, MacGregor, Maddox, and I packed up and headed for home. We doctored, we shopped, we swam, and we ate like there was no tomorrow. My mom came to help with the trip to Ann Arbor but also stayed for the week. The next post will reveal the fun we had breaking all the rules.
The photo below I had to share, is MacGregor stuck in the table in the hotel.
Thank you to all those who sent a quick note sending us thoughts for our trip. I smiled at each one and thought about the support while we waited for each appointment.
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