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:

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

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!

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.

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.

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.

Saturday 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:

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!

As I watch them curled up, still writing over an hour later, I am filled with peace and serenity once again.

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!

When you boil it down, there is a ton of information about parenting; breast feeding, diapering, scheduling, milestones, sleep patterns, bathing tips, birthday party ideas… these things rule the Mommy World on the internet. But where is the information for a child who is not average? You know… the child who is above average, but below in height? Where is the information for children with dwarfism? And if you can’t find anything more than general information about dwarfism, let’s make the search easier, and pin point what we’re looking for: achondroplasia.

There are a ton of “facts”, and “the genetic workings” are explained in detail, but the deeper details, multitude of growth and development charts, information on specific spinal development, and what toys, carriers and car seats work best. Where is that information?

Well, it’s not there.

It’s not in Parenting, Parents, American Baby, Family Circle, Disney Family, OR at your geneticist’s office. It’s not that I’m angry, I’m just confused and deterred. Who do you ask if the doctors don’t know?

I love nice people as much as the next gal, but when I want answers, I want answers. I don’t necessarily care if a doctor is nice when there is no information in hand. It’s not a hard concept- I want to know all there is to know about everything there is to know ,so that Dave and I can raise Addie in the best way possible for her and her needs, while not forgetting our own. We are good parents doing a lot of research, spending time and energy on excavating information that a working doctor does not have time to seek. Except, the one doctor I hoped would know enough to answer questions I had without reading an article she presented to me weeks ago.

I am wholly aware that I need to be Addie’s best advocate, but is there anyone out there who will help me?

The most helpful information I got from the geneticist: Addie’s measurements. For which I provided the growth charts to be plotted upon.
…And provided the accurate reading of said charts- as the assistant, a pediatric specialist, seemed unable to read the caption under the chart stating which lines were for Achondroplastics and which were for AH children.

And so, I guess I’m really just relieved that I did a ton of research so that I could tell the doctor what she was missing, and so I knew what questions I need to delve into further with the right people. But, who are the right people?

I’m hoping to find some answers in Delaware… insurance pending. Insurance; I believe that would be a whole other blog!

On a happy note: HAPPY THREE MONTHS TO THIS BEAUTIFUL BABY GIRL!!

Thank you, one million times over, to the wonderful parents I’ve connected with who have given me more than advice- they have shared all of their medical knowledge with me- making disappointment easier to handle. When I can’t find the exact answer I need, I know I can gain a wealth of medical information from moms and dads who have walked the line before me. Thank you. Thank you so much for sharing with me and helping me navigate my way as a new mom!