Marvelous Monday!

Good morning everyone! I write to you from my office at 6am. I usually don’t write this early, but my husband is finally home from his business trip and that means the dog and cat are going berserk! So, I’m awake, and he is asleep with Addie in bed. Must be nice.

Anyhow, let’s begin our Monday!

I read this piece  on Katie Couric’s website regarding the book Far From the Tree: Parenting a Child That is Different Than You (I can’t wait to read the book), and watched the video of the mother whose daughter is an LP. It was nice to see another parent’s view on their different family, and watching forced me to reflect on a few things I had not thought about.

Kiki has a different type of dwarfism than Addie. She will, most likely, always need a chair to go long distances and she has different medical needs and issues than Addie. If I have not mentioned this before: dwarfism is not dwarfism is not dwarfism. By that I mean in the same way your broken bone is not my broken bone, my parenting skills are not your parenting skills, my Ford is not your Range Rover. There are over 200+ types of diagnosed types of dwarfism and countless others that are still baffling doctors around the world. Undiagnosed forms, children with little to no symptoms and others who are symptomatic without knowing why. I tell you this because my concerns differ from any other parent, as expected, but also from this Kiki’s mother, in particular, because our children do not have the same diagnosed condition.

That being said, I think this video is wonderful and truly made me think. The three things that stick in my mind are:

1. Kiki’s house is not adapted for her at all. This is something I want to do for Addie for the exact reason Kiki’s mother doesn’t. I want Addie to have one space in this world for her. Nothing in the outside world will be built to suit her height. She will reach, climb and ask for many things throughout her life, and I would like to offer her the opportunity to have one comfortable place, where she won’t need to do anything to reach what she wants. Where she can stand on her own two feet. Where it is safe.

I have thought about this since June 22, 2012, when she was diagnosed. I remember one of my first thoughts: the rise on our stairs is too high. I know you’re thinking she can use railings, she can do it. Many LP adults and children live in homes with stairs… but you’ve never seen ours. My husband, standing at 5’9, falls up them all the time. We have owned this house for almost 5 years and he still doesn’t have the ability to walk up the stairs. My mother, who ran a half marathon with me a few years back, gets winded and feels like she’s gone through a workout every time she visits. And my best friend is actually afraid to carry her baby down the stairs when she’s over- she grips the railing like there’s fire down below.

8 1/4″ from the top of one stair to the top of the next. Average rise is 6-7″. Do we replace the staircase in our 1928 home? Nope. We plan on selling if the market ever allows us. I would never feel comfortable leaving Addie at home (in her teens) in a home that simply isn’t safe. I haven’t left her with anyone, in part, because I’m afraid someone will fall down the stairs with her. I love my home… my husband and I rebuilt much of the inside, but Addie’s safety (and some more room for whenever baby #2 comes along) are priority.

Keeping to this theme, I’d rather have a bathroom just for Addie (with a tub she doesn’t have to climb to get into), as well as a counter in the kitchen with her own sink and some space for cutting. I want her to know how to use the kitchen and enjoy our love for cooking in a safe manner. When she is an adult, she can choose to have a stool or a custom home, and she will always need a one to reach the stove and oven, but wouldn’t it be nice to have a space of her own? Our kitchen is not big enough to offer us the renovation option. Another reason, our beautiful little home will not serve us forever.

2. Kiki’s mother wonders what will happen to her daughter when she is gone. She worries about how she will get around, if she will be ok and who will take care of her. Quite simply, I didn’t have to think about this. Not only does Addie have a wonderful support system in family and friends, she has a wonderful extended family in the LPA. She will always have someone to lean on. Besides… when I’m gone, she will keep rockin’. Just like she does  now!

3. Parenting crisis. Kiki’s parents (from what I gathered) are not together anymore. There was much stress on their relationship, I’m assuming, from what was briefly touched upon at the end of the video. I have thought long and hard about this, and though it’s not easy, I am very blessed to have such a hard working hubby. He understands that her appointments don’t allow me to work full-time, especially with him having a 1+ hour commute everyday. In an emergency, Dave could not leave work to get to Addie, or pick her up from places before 8pm during the week, and he works weekends, too (7 days a week… I miss him all the time). Without full-time, it isn’t financially worth it to work. We did a breakdown, and because Dave can never help with general appointments, sleep studies, surgeries, follow-up appointments, or sick days, I would need 30 days a year (give or take). It took 2 weeks and 13 phone calls to get the audiology department to send information to the ENT. It took 4 phone calls to get the referral for Addie’s sleep study to the right office. It took 45 minutes just to be seen by the ENT, 70 minutes to be taken into the sleep study evaluation and we always wait at least 20 minutes at the audiology office. Addie’s surgery includes going to the hospital to speak with the anesthesiology department about Addie’s needs and supplying information to them ahead of time so they can schedule the proper person to put her under, the actual surgery and a follow up. Let it be said. I am stressed. I smile. I love all over my beautiful baby. But, it takes a lot of work to get a geneticist (and his PA), orthopedist, ophthalmologist, pediatric otolaryngologist, audiologist, Early Intervention nurse, speech therapist, pediatric sleep specialist (neurology), and, of course, pediatrician on the same page.

Sometimes my marriage is stressed because of money. Sometimes because I work a lot during the day, but I never get out. And sometimes, because I want someone to rub my back, darn it! But I know that I would rather do this crazy thing called life with Dave, than ever attempt it without.

That being said (and A LOT was said), let me tell you what I’m thankful for this week:

DAVE BEING HOME!

Or… at least being back on US soil. That is (dot. period. end) what I am thankful for. Hands down!
Dave left Wednesday for London on business. Let me tell you about my week:

Wednesday I was up at 3am with Dave. I couldn’t fall asleep again after he left, so I stayed up. Later that day Addie had two appointments. We went to the ophthalmologist where they checked to make sure her vision was OK and was not in any way affected by any extra fluid in the head. Dr. Donahue is so NICE and was great with Addie. In the waiting room, she talked to an old man (she yelled at him) and amused countless people with her pterodactyl impressions and smiles:

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Telling the old man what was up! (Hair clip by Sweet ‘lil You) (Bib by Type A Style)

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This is Adelaide. She is part pterodactyl.

They also dilated her pupils. This was 10:30am. Yikes. She looked a bit scary, but still beautiful!
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Who else falls asleep when their pupils are dilated?

Who else falls asleep when their pupils are dilated? This doctor was clearly boring!

Then we went to the ENT (Dr. G is amazing, and there will be a longer post about this)… time to schedule surgery for my baby girl. It was a sad time for me and with the 45 minute wait to be seen with dilated pupils under florescent light… Addie was a peach (note: sarcasm). So, three more appointments we scheduled for various ear-related things, and we were back in the car and headed home. Addie seemed upset, but she took a short nap while I wrote and recomposed and then she was her jovial self again. I still had not slept, and seeing as 5pm was coming quick, I decided I would just pass out after Addie went to bed.

She didn’t look happy, and so it was.

Doesn't feel so good.

Doesn’t feel so good.

Wednesday night Addie was awake every two hours. This had never happened. Ever. Even when she came home from the hospital, she slept 3-4 hours at a time during the night. What was happening?! Thursday at 6am I took her PJ’s off to find her body hot and diaper dry. 101°. Doctor. Ear infection. Unreal. Day spent in bed trying to break the fever, administer the pink stuff (Amoxicillin), hydrate her with as much milk as she wanted and snuggling the heck out of her pain. She slept, I kept watch. Plans to get out and see a friend were cancelled and staying home alone with Addie was in store. We did play, however. What better way to use our medicine dispenser than as a toy?

Thursday night was better, but she didn’t sleep as soundly as usual, so I stayed up watching the monitor, jumping up to console her when she got too stuffy. She wakes with a few screams during the night as it is (apnea), but usually falls right back to sleep. This discomfort was different. This broke my heart. No suctioning, medicine, milk, humidifier or steam was helping.

I brought her into bed with me where she “tree-frogged” all night, but was much happier. We sent this video to Daddy:

Friday morning, still sleepless, Addie was in better spirits. We played and had a great time. She was feeling better, and I was hoping the reign of being cooped up in the house could end. And it did. While playing, Morgan (the cat) snuck through the toys. Carter (the dog) gave chase. Practically running his 70 pound body through her, he lifted Addie up and over, into the wall. Carter immediately felt bad, but Addie, I’m sure felt worse. And me? I was in tears. I gave her some milk to calm down, and called the doctor to tell them we were on our way.

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I tried to email Dave to get him to call (the WiFi in London is terrible), but still, he could not get through. All I could do was send him this picture. He was horrified.

The doctor laughed when he saw us again (second day in a row), but cringed when he saw Addie’s head. He felt the bump and skull, checking for bulging fontanelle and a fracture, but she was smiling up at him, happy as could be. By the time we got home, the head was already looking better (and her hat helped hide her trauma). By the next morning, just a bruise and small cut.

HeadbumpSaturday was amazing. We didn’t go to the doctor once. I caught up on some sleep and snuggles, and got all of the laundry done, the house cleaned top to bottom, the trash taken out, the dog got a bath, the litter box got changed, everything was put away in its place. All that was missing was Dave.

So of course, on Sunday, Dave’s original flight was cancelled and replaced by another. Eight. Hours. Later. We spent the afternoon with cousins to take our minds off the delay of Dave’s arrival, and that gave Addie some much needed rest:
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Finally, it was almost time! Addie was excited to see him, all she could say was “da,da,da,da,da” every time I told her “dada’s coming home!
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As I watch them curled up, still writing over an hour later, I am filled with peace and serenity once again.

My whole world

My whole world

And, to be brief… my one random of the week.
I found out what I’m made of this week. I beg all you ladies out there who are at the end of their rope to climb one rung higher than they thought they could. Take one more step. Do it because I know you can. Thankfully, it was just a run-around week. Addie is OK. While Dave was away, there was terrible WiFi connection and so we spoke for less than 10 minutes total (in 5 days).

When we got Addie to bed, Dave showed me the video he tried to send me a bunch of times, but the file was too big for London’s bad connection and all I got were a handful of blank emails. This sums up my man. I love him and his quasi-romantic, goofy, nerd-boy self.

Thank you for joining me on another Marvelous Monday journey!

P.S. Happy 28th birthday to my Prom Date, Dean!

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33 Comments

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33 Responses to Marvelous Monday!

  1. Cynthia

    Chelley, I truly enjoy your writings. It gives me the opportunity to learn so much, thank you. God bless you and your family.

  2. I love these glimpses into your life Chelley. Thanks for sharing yours and Adelaide’s story with the world. :)

  3. Janine

    Thanks for writing! It’s comforting to know other parents face similar running around to umpteen doctors’ appts (including the egg-sized bumps on heads!!) Just this past week we have come to realize that we think our son (who has achon) has developed apnea. His “only” symptom is gasping for air every 3rd breath while he sleeps. And, we live about 7 hours from DuPont. No doctor in this county would see my kiddo last week. Our 22-pound guy scares doctors! So, we trekked to our ENT about 1-1/2 hours away. He told us to report to an ER that is located about 3 hours away. He refused to tell us what was going on (respiratory infection or apnea or a lego lodged up his nose, etc). He told us that WE would have to try to get him admitted for observation at this ER. I asked for some kind of something in writing to help us make our case (given that he has no fever, acts fine, etc.) and he replied “that would be inappropriate”. Ya, this is from the doctor who told us a few months earlier that he will become part of our family because our kiddo will need new tubes annually. Thankfully, before we made the 3-hr trip (in the driving snow with 2 young kids) an NP at DuPont left me a voicemail that eased our worries. The next morning I spoke with her about sleep apnea and kiddos with achon. We set up an appointment for another sleep study. That hospital is my Mecca, I tell ya! Except for the fine medical professionals at DuPont, I have lost faith in the medical community- at least those who are in a 2-hour radius from home. Ok, time to end my rant. Have a happy week.

    • Oh my gosh Janine!!! Where are you located? That is insane. I love Dr. Bober and Angie Duker at DuPont. Thankfully we have a wonderful team, but I need to toot my own horn (and YOU need to, too). All that hard work we do to make sure our babies have the best care and we seem to be the only ones who know which doctors need to be called and we have all the information. SO important. You’re doing great and I hope your sleep study is uneventful. We have Addie’s second one coming up in March, a week after she has surgery. Yikes!

      • Janine

        We are located in the Sticks- NW PA. We love Dr. Bober and Angie Duker too. BUT…. they were out of their office last Thrs. and Fri. Oh how I needed their calming voices of reason! Haha (I can laugh about it today!) Do you have plans to attend any LP events? Feel free to contact me directly via email. Best of luck with surgery and sleep study. Our kiddo got tubes at end of Nov. and it was over in less than 15 minutes.

      • I sent them an email about Addie needing tubes and got the out of office email! Without them I feel lost!
        We will be at the national in DC (a wedding anniversary treat from my parents!). I would love to meet up! I am from PA, as well… outside of Philly.

  4. Oh my, you had quite the week! I don’t know how you do it – I am in awe. And I love all the sweet photos of Addie … you can tell she’s a bit of a ham :)

    • Thank you so much. I cannot tell you the support we get… it means the world to me. I often tear up reading comments from people who have been following Addie. The people who read have a profound influence on me and will on her, too- when she is old enough to understand what I write.
      And YES… she IS the ham of hams! :)

  5. There is nothing like a hubby and daddy being away to really make the days interesting. I’m glad he is back safe and sound and the little cutie is on the mend. I just love all the photos you share. Have a great week!

  6. What a long week – but I’m glad that she’s on the mend from her ear infection!

  7. Beautiful photos, sounds like a tough week, but yes, it is nice when Daddy is home to help out! Also, I like that you plan to make your house comfortable for Addie, I would think that would be a much easier way to grow up.

    • I hope it does. There are so many things I can think about, but never being in Addie’s position, I can only do the best I can with what I’ve got. I will repeat that mantra when she’s 13 and hates me ;)

  8. That sounded like a trying week. I’m glad you’re all back together.

  9. Motherhood: Never a dull moment! Glad all is well – what a clunk on her head!

    And good for you to take input from the outside (the book you saw featured on Katie) but to evaluate and accept/reject based on what works for YOUR family! It’s SO individual and I applaud you for having the confidence to know what you need to do for your Addie! She’s precious!

    • Thank you, Leah! She’s such a trooper. I know I would still be complaining about my head, and she was happy to have the doctor examine her skull. Strange how resilient kids are, and us parents are so fragile!
      It feels good to do what we think is best for Addie. Thank you so much for writing that. It’s so hard with all the one-upping out there, to think what you’re doing is OK and the “right” thing for your child. I lack confidence in many things in life, but being Addie’s mom is my strong suit (I hope!). Much appreciated :) We ladies don’t pat each other on the back enough!

  10. What a week! This is my absolute favorite part of this piece:

    “I found out what I’m made of this week. I beg all you ladies out there who are at the end of their rope to climb one rung higher than they thought they could. Take one more step. Do it because I know you can.”

    I love that. I’m sharing it because it is so meaningful and so important to remember.

    • Thank you so much. Your post made me reflect, too. Sometimes we have to keep pushing even when we “know” we can’t.
      The sun comes up tomorrow with or without us… I choose to be there- and I know you will be, too!

  11. What a week you had! I love when you allow us to delve into A’s life! I am glad you have your hubby back. I know I get all frazzled when Greg is away. Love the photos!

    • Thank you for diving in with me! Sometimes it feels like head first into the shallow end, but there is (thankfully) always another foot of water to cushion our plunge! And men… don’t always love living with them, but surely would not choose to live with out (the one) him. :)

  12. I know a guy who would LOVE to build a custom kitchen and bathroom for Miss Addie! Oh, and in the future, she could have a cook top built in to a low counter-top, rather than a conventional stove!

    Anywaaaaayyyyy….. Glad Dave is home, and hopefully there wont be anymore unplanned doctor’s visits in your near future!

    • Sarah… you’re a genius! I will be looking into a space just for her- including a functioning section of the kitchen! Thank you!!!!
      And I am glad he’s home, too! These men are kind of important. Who knew?! (Don’t tell them)

  13. I always look forward to your posts. Thank you so much. I feel so blessed to read your writing. You are an amazing mother and Adelaide is the luckiest girl in the world to have you and your husband as parents.

    • I called my mom to read her this comment. I cannot thank you enough. I feel blessed every moment to have readers following Addie (and me)- to help us process, learn and be taught along the way. Thank you, thank you, thank you. From the bottom, top and all around my heart.

  14. Jodi

    Wow what a week, so glad your hubby is home again. We all need a break, and sometimes just a nap! I love your philosophy on creating safe space for Adelaide – everyone should have that in their home. And, god knows she will be climbing “one more rung” in the outside world everyday – just like her mother showed her!

  15. Wow! What a week is right!! Poor little girl! Can’t believe she was thrown into the wall. Glad she’s okay!

  16. You are a wonder woman! Glad your hubby is home but what how valuable to see what we’re capable of when we’re called to rise to the occasion. You’re a rock star! ps. I got teary eyed when you talked about creating one place on this earth just for her. She is so blessed to have someone who so deeply cares about empowering her.

  17. So glad Dave is home! It must have been extra hard with him being out of the country with such spotty wifi. You are really doing such a service to your readers, educating us about the different types of dwarfism, and how what’s right for one family isn’t necessarily right for another. I know I’ve said this before, but Addie is SO blessed to have you for a mom, just as you’re so blessed to be able to call that sweet girl your daughter!

  18. Here’s to a better week for you both! I have been thinking about the house question, too, and I like how you put it- that we could make her house at least the one place Sabela is comfortable in the world. I’ve thought of the same changes you’ve mentioned- the bathroom tub and sinks in the kitchen and bathroom. We need to re-do those two rooms eventually anyway. We’d also like to put a bathroom on the first floor (we have two upstairs next to each other- how silly), so that could be designed from the beginning with her needs in mind.

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