Norah's Celebration of Life

While I did not keep this blog updated, it seemed an apropos spot to share information about our Norah's Celebration of Life. We were so sad to have to say goodbye to Norah, but we could not have asked for a more beautiful, peaceful, and perfect sendoff for our girl. Our home was full of family, friends, and immense amounts of love for Norah. We are sad but so incredibly grateful as well. And this past week, while hard beyond words on our family, brought with it overflowing support and love from those whose lives were touched by Norah; and that has helped to bolster us against this sadness. Thank you to everyone who has reached out, stopped by, sent/brought us food and flowers, emailed/texted/messaged and supported us from near and far. You are Norah's community and we will never forget the vital role you played in our sweet Norah's life.

We are hopeful that you will all come join us in celebrating Norah's life. Near, far, close family or friends we only knew through Facebook-- you will be welcomed with open arms and hearts. We will have lots of activities for kids to do, as well.

Here is the Evite where we would like everyone to RSVP so we can get a handle on how much food we need. Everyone is welcome!! 

http://evite.me/14N8kQjyR7

We would love for everyone to wear bright, happy colors to celebrate Norah and her vibrant soul. Her favorite colors were red and yellow, but she loved all bright colors! Just be comfortable-- kids can be outside playing, weather permitting :) 

We don't have everything planned yet, but so far we know that her Celebration will be held at her school, High Point. We are so grateful to the administration for allowing us to use this space where Norah spent so much time and had so much fun. Going to school brought her so much joy and I couldn't think of a better place to gather to celebrate the truly amazing life she had.

We will be gathering starting at 11:30am on Saturday, October 20th. We will serve lunch and then we will have a more formal ceremony time with readings and time for folks to share anything they'd to about Norah.

I created separate blog posts for information about High Point, nearby hotels, as well as Norah's obituary. See the list of posts for September to find all that information.

In lieu of flowers, we are asking that people consider making a donation to North Star Reach Camp. We attended family camp there this past year, and it was an unforgettable experience. We would love to help make that experience possible for more children in the future.

North Star Reach Camp
1200 University Camp Drive
Pinckney, MI  48169
734-680-8744
https://www.northstarreach.org/support

    

    

High Point Information

High Point School

1735 S. Wagner Road

Ann Arbor, MI  48106

734-994-8100

High Point is part of the Washtenaw County Intermediate School District. It is located on the Western side of Ann Arbor on Wagner Rd, between Liberty Rd and Scio Church Rd.  The school is on a campus shared with an administration building (see map below). When you pull onto WISD Drive, you'll need to follow the road around to the back of the campus, passing the administration building, until you see the single-story dark brick building. Park in the lot in front of the main entrance (see photo above).

We will have signs up to direct you which door to enter through. We will be spending time in the gym, cafeteria, and also on the big accessible playground. There is a good deal of accessible parking and the school has accessible bathrooms with large changing stations.

I would request that those who do not have accessibility issues park toward the back of the parking areas. I expect the accessible spots will fill up quickly, so having closer spots available would be awesome for those families.

Nearyby hotels by area

Because we are a bit spread out, I am providing a short list of hotels in Ann Arbor (where High Point is), Ypsilanti (where Brian and Cena live), and Canton (where Mark and Liz live). I'm sure there are others as well, but these are the ones closest to each of those locations.

Ann Arbor (West side, near High Point)

Holiday Inn Express & Suites Ann Arbor
323 N Zeeb Rd
Ann Arbor, MI  48103
734-827-1100

Hampton Inn & Suites Ann Arbor-West
2910 Jackson Ave
Ann Arbor, MI  48103
734-994-1100

Wyndham Garden Ann Arbor
2900 Jackson Ave
Ann Arbor, MI  48103
734-249-6157

Weber's Boutique Hotel
3050 Jackson Ave
Ann Arbor, MI  48103
734-769-2500


Canton (near Liz & Mark's house)

Fairfield Inn & Suites by Marriott Detroit Canton
5760 N Haggerty Rd
Canton, MI  48187
734-844-0088

Hampton Inn & Suites Detroit-Canton
1950 N Haggerty Rd
Canton, MI  48187
734-844-1111

Baymont by Wyndham Canton
5700 N Haggerty Rd
Canton, MI  48187
734-981-2440

La Quinta Inn Detroit Canton
41211 Ford Rd
Canton, MI  48187
734-981-1808


Ypsilanti/Ann Arbor (near Brian & Cena's house)

Fairfield Inn & Suites by Marriott Ann Arbor Ypsilanti
326 James L Hart Pkwy
Ypsilanti, MI  48197
734-231-2292

Ann Arbor Regent Hotel and Suites
2455 Carpenter Rd
Ann Arbor, MI 48108
734-973-6100

Comfort Inn & Suites
2376 Carpenter Rd
Ann Arbor, MI  48108
734-477-9977

Norah's Obituary

http://www.mccabefuneralhome.com/obituaries/details/2249

With deep sadness, the family of Norah Elizabeth Hambrick announces her passing on September 10, 2018.  Norah slipped peacefully from this world at home, in her mother's arms, surrounded by the boundless love of her family and friends. For seven vibrant years, Norah was a beacon of joy for her blended family and community.  She taught us that life is about quality and not quantity and that we need to slow down and cherish each and every day.

Norah will be lovingly remembered by her mother Liz, father Brian, stepmother Cena, stepfather Mark; stepsisters Caitlyn, Makayla, Emily, Skylar, and Kieran; and her dog Buckley.  Norah was adored and will be missed by her large family, including her grandparents Chris and Doug, Pat and John, Mitzi and Jim, Linda and Brian; her aunts and uncles Katie and David, Kris, John, Chelsea, Matthew, James and Katie, Jason and Niki; her cousins Mitchell, Cormac, Isaiah, Ethan, Eli, Zaeden, April, Zoey, Dotti, Judeah, Avery, and Jasper; her nannies Nancy, Janel, and Vicki; her teacher Jessica, as well as a vast community who followed Norah’s journey from near and far.

Norah’s favorite things were snuggles, dancing with daddy, sucking on mama’s shoulder, going to school, playing with her sisters and cousins, listening to music, swimming, Sesame Street (especially Elmo), Moana, curly ribbons and beads, hands-on art, and kicking over blocks and nearby food or water with her “happy feet”. She loved swinging, being dipped down quickly and brought back up in our arms, and having air blow through her magnificent hair. She was an inspiration to all who met her and lit up the room with her infectious smile and bright blue eyes. Norah developed her own way to communicate that transcended language. With both her amazing range of facial expressions and determined hollers, she always let us know exactly what she wanted. We are so proud of our sweet Norah.

Norah was born with Pontocerebellar Hypoplasia Type 2 (PCH), a rare genetic disorder, and beat the odds to live a full and happy life thanks to the love and care of her family, friends, and caregivers.  The family is particularly grateful for Arbor Hospice’s pediatric team, led by Dr. Patricia Keefer, who were so important in maximizing Norah’s quality of life over the past three years.

Norah’s family is hosting a celebration of her life on Saturday, October 20, 2018 at 11:30 a.m. at her school, High Point School, 1735 S. Wagner Rd, Ann Arbor, MI 48106.  More information is available at http://allfornorah.blogspot.com/.

Donations in memory of Norah may be made to North Star Reach Camp, 1200 University Camp Drive, Pinckney, MI 48169 https://www.northstarreach.org/support.  Norah attended camp there this year and had a wonderful time with her entire blended family.

Getting back into it-- Success Story #1

Getting back into it—Success Story #1

I’ve been on quite a long hiatus from this blog writing thing, but I am going to try to get back into it now! It’s been a long several months, full of eventful days and nights. I’m going to break up all our adventures into more manageable pieces. I’ll start on a high  note J

Exciting story #1 : We FINALLY got approved for the Medicaid waiver program! I worked hard with a number of people to muddle through the crazy system, and after providing many documents of support, the folks at the state level agreed to waive the income requirement and allow us access to full Medicaid. Having Medicaid helps us in a number of ways:

1.       We qualify for respite care hours! At this point, we will likely have to fight pretty hard to get more than the minimum of 10 hours per month, but fight we will! Our goal is to ask for 80 hours, which will help to cover the costs of having an in-home nanny. Because of Norah’s high level of needs, a daycare center is not an option. Not to mention the risk of germ-sharing. We are still very protective of Miss Norah’s health, since she has a harder time recovering from respiratory infections. Small colds can easily turn into pneumonia, because her lungs aren’t always strong enough to cough up all that junk. I’ll fill you in more later on what we did to avoid pneumonia last month…

2.       Equipment is more readily covered by Medicaid. Things like a stander, gait trainer, bath chair, special needs car seat or bed are all covered more readily by Medicaid than by primary insurance companies. We are currently applying to get a stander that will allow Norah to both sit and stand, and move from one position to the other. Here’s a photo:

We are also starting to evaluate special needs car seats, but Norah’s light weight only leaves one car seat to choose from (not really a choice, eh?!?). It can accommodate up to 90 pounds, so this would be the only car seat we would ever need, if we decide to do it right now. The next set of seats open up at 25, then 30, then 33 pounds. These all sound so far out of reach. Details on troubles with weight gain and related challenges will be coming soon too.

3.       When Norah turns 3, her diapers will be covered by Medicaid! I know many moms are so excited when their kids are finally potty trained because they can stop paying SO much for diapers every month. But Norah will always be in diapers, so it’ll be nice to have this financial ‘burden’ lifted!

4.       We qualify for WIC. Because we are doing a blended diet with Norah (I promise I will do a separate blog post about this…I’ve been taking photos in preparation over the past few months of the different derivations of blends), having WIC allows us to get some financial assistance with the ingredients. Having the more basic ingredients covered makes it easier to afford some of the more expensive/obscure items (i.e., oat milk, agave nectar, grape seed/safflower/sunflower seed/coconut oils, quinoa). Her blends are constantly changing…this has been our biggest challenge in the past several months—trying to work out which ingredients work, which don’t, etc. It’s hard work!

5.       All copays for both her pediatrician and specialists are covered. I just got out of an appointment with a social worker at the hospital (yet another blog post topic!), who told me that last year we had 146 appointments. That’s right…one hundred and forty six. And there are only 200 business days in a year! And, that 146 does not even count our visits to her pediatrician, since he’s not in the University of Michigan system. That’s probably another 25 or 30 appointments. Pretty amazing! You can see how those copays add up at $20-$30 a pop! Luckily we have had our specialist appointment copays covered for awhile now because Norah has had a secondary insurance program through the state called Children’s Special Health Care System. Those copays now shift to Medicaid along with her primary care copays. Thank goodness!

I’m sure there are other perks that I have yet to discover, but I am so grateful to have been given access to this program. It has its faults, for sure. I have quite a few thoughts about WIC on a policy level (we only are allowed $6 per month for fresh produce, but WIC provides two 64 ounce containers of juice! What?!?)  Complaints aside (for later posts), I am fortunate to have had all the help from case workers, social workers, and administrative staff at the state level to make this possible. It was well worth the time spent fighting for it! 

To close...A few photos of Norah from the past few months! 

Microcephaly Awareness Day!

One of the defining features of PCH is progressive microcephaly. Microcephaly means having a small head, and progressive suggests that it will get more pronounced with time. It's not as if her head is shrinking or anything (I can't help but think of that last scene from Beetlejuice with the shrunken head guy in the waiting room); it's just that her head grows at a VERY slow rate so that as the rest of her body grows at a normal rate her head will continue to look smaller and smaller on her body.

In fact, it really is just in the past few months that I have begun to think that it is becoming more obvious. At warm water therapy last week, the therapist noted that at first glance it looked as if Norah's head was about the size of a 6 month old's. After looking at the growth charts, she was spot on. The 50th percentile for head circumference in a 6 month old is 44.03 cm, and last week at her genetics appointment Norah's head measured at 44 cm (17.32 inches). Again, looking at the growth charts, the 50th percentile for a 26.5 month old is 47.78 cm (18.81 inches). The 3rd percentile is 45.03 cm (17.73 inches). So Norah falls almost half an inch below the 3rd percentile.

To put this in context with the 'progressive' part of the microcephaly, when Norah was born she was in the 7th percentile for head circumference (Sidenote: Interestingly, not a single nurse or doctor mentioned this to me--I have to be honest, it seems noteworthy! But I didn't find out until two weeks ago when I was reading through some of her medical records sent to me by the social worker from the hospital to support our medicaid waiver application [different post, coming soon!]). So, while doctors want to see kids following upward curves on these growth charts, Norah is showing a slow downward slope.

I truly have no idea how much more Norah's head will grow, or when it will stop growing all together, but for today (and every day) we will celebrate her for who she is and spread awareness of this surprisingly common disorder. Microcephaly affects about 2.5% of the population and has a wide variety of causes. Check out this link from the Mayo Clinic to learn more: http://www.mayoclinic.com/health/microcephaly/DS01169

Here's Norah wearing yellow to raise awareness for microcephaly! Her pose, framing her head, is quite apropos, if I do say so myself :)

A good day!

Despite several pretty intense seizures, today has been a great day! Primarily because we got to pick up Norah's wheelchair/stroller. We started the process in February, and 4 denials (two from our primary insurance, two from our secondary insurance), a long appeal process, and many phone calls later, we got to take it home today! 

It came fit to her measurements from February, so it was pretty cool to see how much our little lady has grown. Her femur alone grew 1.5 inches! Way to go, Norah! Failure to thrive, my butt. 

Of course, Norah had to immediately brand the stroller. Shortly after getting in, she had a big seizure and puked up all the carrots I had given her for a pre-breakfast snack. Thank goodness for black fabric on the seat! It also allowed us to see how great the forward-tilting seat function is. With the butterfly chest strap in place, we can tilt her forward and let the vomit fall out of her mouth so she doesn't suck it back into her lungs. That's just one of the awesome features this chair offers. My favorite, I think, is that I can switch the seat to be rear facing, so I can see her when we're on a walk. Yay! 

The thing weighs close to 40 pounds, but the seat can come out of the base, so I should only have to lift about 20 pounds at a time...and Norah is a bit heavier than that now (21.5 pounds...woo hoo!), so it shouldn't be too bad. A good upper body workout, at least. 

Getting the chair also made me get my butt in gear about asking for a handicapped tag for our car. I called the doctor and it's as easy as them filling out a piece of paper and sending it to me. Once I get it, I can take it to the SOS (Michigan-speak for DMV) and get the tag. For some reason, I thought it would be much more difficult than that. Apparently I could have gotten one a long time ago, but I felt weird having one before we had the wheelchair, for some reason. (This would be a great discussion topic for a Disability Studies class!)

Can't wait to take our girl out for a spin in her new wheels this weekend!