Showing posts with label Anna Bean. Show all posts
Showing posts with label Anna Bean. Show all posts

September 13, 2018

Camp No-Limbitations

Anna went to a one week sleep-away camp at just 7 years old.  We felt so comfortable sending her because we knew she was in such good hands with Children's Healthcare of Atlanta, who ran the camp for amputees. They had medical staff on site all over and went over the allergy free menu with me extensively. She also had the privilege of attending with a friend from out of town, also named Anna, who has become a lifelong buddy.

I'm so thankful for this program and hope it continues to build Anna's self-efficacy and self-confidence as she grows. She is already asking me when she can go again! Thank you CHA and Camp No-Limbitations!











April 25, 2017

Swimming past challenges


Swimming isn't easy when you only have one foot. Anna has been taking swimming lessons from a swim academy since October. Our recent trip to Florida gave me the opportunity to see her beginning to swim for the first time without help from an adult. I'm so proud of her.


December 27, 2016

Leg #5

Anna's previous leg lasted almost 2 years and she received a new one this past month. Her new leg has a more flexible foot with a metal insert. I don't know any of the fancy terms, but she seems to like it :) Instead of being overwhelmed with fabric choices for her leg, I went to the fabric store and brought back 5 patterns I thought she might like. She chose this one because it was pink and "sparkly".  Here are some pictures and a video of her trying out her new leg.






February 29, 2016

Running

So far, Anna has been able to do most everything other kids her age can do. But as she's getting older, I've noticed that children are starting to surpass her in certain ways. The other day, at a friend's house, the kids were all playing tag. The ground was sloped, which made it especially hard for Anna to run on because her foot doesn't bend which makes her unsteady climbing up a slope. I saw her chasing and chasing but she just couldn't keep up with her faster counterparts. I saw her get tired more quickly. Even though she had a smile on her face, my heart broke. I wanted to help her, to make her go faster like the other kids. I wanted to encourage her. I just wanted to 'fix' it. I decided not to say anything after, except that it looked like she had fun playing tag.


She said, "I was the only one who didn't get to run away from anyone! I had to catch everyone."


I paused and thought about what I should say, or not say. I told her that sometimes things like running fast are a little bit harder for her than the other kids because of her leg, but that she did a great job. I wasn't sure if I should have just listened to her and not brought up her leg... I struggle with knowing whether I'm focusing on it too much or whether it's a good thing to acknowledge her difference and help her frame it in a positive way. These are the questions I ask myself and will continue to ask myself as she grows and has more questions and situations arise.


She is starting to notice some of her limitations and that certain things are going to be a little bit different for her. When I think back to my own childhood, so many vivid memories arise of times when I struggled, and my sensitive nature made these times especially difficult. Ben says it's important not to project your past experiences on to your children, and he's right. But it's hard. I wish she could run like everyone else. Most of the time I feel proud and thankful for Anna's differences, but there are those moments when I wish she didn't have to struggle. This is a seemingly small incident, but it reflects the future in that I know there will be many more bigger hurdles to come. And she can overcome them. I just have to learn the best way to support and encourage her. It will take courage, support, and guidance. I pray that God will equip me with the wisdom and strength to guide my daughter- to know when to be there for her; when to talk and when to listen.

May 5, 2015

Leg #4

                           
                 






Today we received Anna's fourth leg. She's had her current one for 14 months, which is a really long time for a growing child. Her new leg is a little bit more advanced than her previous one. It has a foot with mechanics that allows it to bend a little bit side to side and front and back, which means it will give her more shock absorption when she puts pressure on it (jumping, running, etc.) and will be easier to manipulate. We wanted to go ahead and move forward with the next type of leg even though the foot only came in a size that was a few sizes too big for her other foot. This means that the leg is a little bit bigger than her other one, but still just as functional. We know she will grow into a 'matching' size soon.



Test socket

Test socket


January 23, 2015

Daily Inspiration


First, some inspiration close to my heart:




Next, have you seen the new Toyota Superbowl commercial?




I love this girl. Here are some of my favorite of her performances on Dancing with the Stars:












January 16, 2015

Fibular Hemimelia Q&A




I thought I would share some responses to the most commonly asked questions I get via email, from parents who are pregnant or have a newborn child with Fibular Hemimelia. I hope this will be helpful for others. I am always available to answer additional questions via my email, as well.


1. How does your child swim? Does she wear a special prosthesis?

For us, it depends. We let her decide whether or not to wear her prosthesis in the water. Most often she chooses to play without it, and she doesn't wear it for her swimming lessons because it's easier for her to learn without it. Once she learns to swim, I will also have her practice with it on, just to make sure she could handle survival swimming if she were to ever fall into deep water (because if she ever was in danger, she may very well have her prosthesis on). If she wants to do a lot of walking or moving (especially at the beach), sometimes she chooses to wear her leg. We are okay with it getting wet, since she outgrows them fairly quickly at this age and we don't have to worry about it degrading over time. We  make sure to dry it thoroughly so it doesn't rust. Right now, we actually have two legs so we an alternate if one is wet. Sometimes we use an old leg in the ocean if we have one handy. It won't fit perfectly, but it will usually work well enough. Another thing: the prosthetic tends to fill up with water and get heavy.


2. How does/will she take a shower? Go to the bathroom at night?

Obviously, we are not into showers yet. But I think Anna will have no problem. Her residual limb is long enough to where she can bend down on it and balance. We might end up putting a handle on the shower for balance, or a chair that she can sit in if she needs one to shampoo her hair. I personally think a chair would make more sense. I'm pretty sure she will find a way to manage- she has with everything else. These kids are amazing!  As for the bathroom, Anna is potty trained and has no trouble getting out of bed, going to the bathroom, and using a normal sized toilet by herself (and she only weighs 26 pounds). Remember that they will learn to be mobile easier than you think.


3. What are the financial implications for the future?

I won't sugar coat it. Prosthetics are expensive. The early, most simple ones start at around 5K and they get more pricey as they get older, anywhere from 15K to 100K. It's definitely a financial commitment, and that's hard, especially if you have a high deductible as we do. We are in an ongoing conversation with our prosthetic clinic. Shriners Hospitals used to cover care at no charge, but that has recently changed. Just prepare to spend a lot of money on medical expenses. Maybe it means you have to cut back your lifestyle, but I can't think of a better reason to do so.


4. Were you worried when you had a second child that there would be something wrong with him or her?

I was not worried about having a second child with a birth defect. FH has not been shown to be genetic, and I trusted in the science that came to that conclusion. That said, I was very careful to avoid medication, contracting illnesses, or exposure to teratrogenic chemicals during the first trimester (as most anxious mothers do :)


5. How did you know what treatment decision to make? Can you give me any advice on navigating the options?

I would highly recommend getting at least 2-3 opinions. Most people head to their nearest children's hospital, which is fine (that's what we did). Problem is, most surgeons only see a few cases like this a year, if any, which means they have much less experience with outcomes. Places like Shriners Hospitals for Children specialize in orthopedics. Their surgeons see patients with FH daily, whereas surgeons in other hospitals might only treat one or two per year. That said, each surgeon is obviously different. I think it's definitely worth checking multiple places. Make a list of questions and see how knowledgeable the surgeon is. Ask what your child's projected leg length discrepancy would be. Ask how many amputation/osteotomies they do each year for children with a missing fibula. Ask what kind of amputation they prefer (Boyd, Symes) and why. Ask what their proposed timeline for treatment would be.   We were only comfortable doing the surgery around age 11 months, which is when Shriners' surgeons choose to do it.


6. Will I always feel this sad and anxious? I am so afraid of what this means for my baby.

No, you will not always feel this sad. If you've ever felt like this or like this, it may be hard to believe. The first two years are  hard- really hard. But all that sadness, grief, and anxiety really, truly goes away once you see your child thriving. I honestly have trouble remembering how upsetting it was three years ago, because things are so different now. There are lots of challenges and my heart still aches on some days (though honestly, much more regarding her food allergies and asthma than her prosthesis). Certain situations can be hard. The first time Anna tried to walk in plastic princess high heels like her friends, when she discovers a limitation, when she meets someone new and gets asked lots of questions. But they learn to handle it, and so do you.


7. What can I do as a parent to help my child develop a healthy view of himself/herself before they start facing some of the obvious challenges of having a disability?

As a parent (and a therapist), I believe it's important to be open with children. Talk to them about it. Don't pretend like they aren't different; they are. And they will come to realize it. But help them see that it doesn't have to be a bad thing. Help them build their identity by introducing them to books, toys, media, stories, and people with amputations (here is my list of resources). Model for them ways to respond when people ask questions (stay positive). Teach them that people will be curious about things they don't know and that they can expect questions and looks. At the same time, it's okay to educate them. I was always advised not to set limitations on my child and that was the best advice I've received, because there were times I've been tempted to tell Anna she 'can't' or 'shouldn't' do something (like walking around in those heels!), and she figured out her own way. I let her fall down, I risked that she might get hurt. I held my tongue. And she surprised me. She didn't know any different. Educate her teachers on some of these things. Here  is a link to the lesson I did for Anna's preschool class.


8. Any practical tips for prosthetic wearing? How do you handle any issues that arise? I feel clueless as to how to make sure my child is getting the best appliance with the best fit. How do I recognize if there is a problem?

I cannot express enough the importance of finding a clinician who is skilled working with children and whom you feel comfortable with. Fit is the most important thing and it's hard to get just right as they grow. Anytime you notice that your child is walking even a little bit differently, take them in to their prosthetist to have them evaluated. Kids can develop poor habits quickly, and they are the experts at telling when an adjustment is necessary. I would also recommend going in every 3-4 months at least if you don't notice any changes, just to be sure. Kids grow super fast. If your child's skin starts to get irritated, STOP wearing the prosthesis as much as possible. It will only get worse, and if it goes too far (like developing a blister), you may have to be off the leg for a couple of weeks, which is clearly a complicated thing. Any abnormalities on the skin usually need to be addressed right away.


9. Any tips for dealing with questions/stares/comments and potential hurtful things down the road?

I'm not an expert at this, and I'm still learning. But staying positive seems to really help. Assume the best about people's intentions. Looking is inevitable and human nature. Helping the kiddos be comfortable with it is easier than trying to get people to not stare or hoping your child won't notice.

I tell Anna that any teasing or unkind words says more about the other person than it does about her: some people are mean because they are hurting inside. Some are mean because someone is mean to them, too. Some people are just curious because they have never seen something like that before. Some people are mean because they don't know any better. But whatever the reason, it doesn't say anything about YOU. I try to teach her that every kid struggles or is different in some way, sometimes it's just more obvious than others.

Once I heard Anna tell another little girl that when she got older she was going to have two real legs. It broke my heart. As kids get older, they will go through their own process of realizing what's different about them and how to incorporate that into their identity It's important to be there for them, acknowledge their feelings, and not try to make it all better or give cliche, pat responses. Just be there and show your support and love, and that you believe in them. That's all I know to do.

Oh, and remember that kids pick up on and recall what you say about them to other adults. So watch your words, even when you think they aren't paying attention. Don't talk about them as if they weren't there, and respect them the way you would another adult. Remember that you are shaping their view of themselves by your words- not just to them, but to others, as well. I'm always messing up on that one.

I hope that was helpful!



January 14, 2015

Currently





I've been really bad about posting lately, so I'm going to do a Currently post just to get something up here! But I've received some awesome emails from new parents with kids with FH, and I'm so honored to be able to connect with you. Please don't give up on me. I'll post some more coming soon :)

Feeding: Have I ever mentioned that I hate cooking? Let's not talk about this right now. Do you ever feel like you are hugely failing at feeding your children healthy meals? Yeah, me too. Vegan cream cheese is our new find. Both girls will (and can) eat, and its first ingredient is coconut oil. That's healthy, right?

Reading: Okay, so the next book in the Red Rising trilogy came out in January. At the time, I didn't realize it was a new series and that I would have to wait years to read the final installment (my patience isn't that great). So here I am, one of those crazed fans reading the book right when it comes out. I loved Red Rising. Golden Son (second book) is so far really good. The language is a bit too much for me, and it definitely seems to worsen in this book, but the plot twists and dialogue is so so good. I heard the end is the biggest cliffhanger ever, so of course I'm not looking forward to that and having to wait another YEAR or something crazy to read the last book.

Needing: Nice weather. Getting out of the house. I can't believe I was raised in New York. I cannot stand the cold for one minute. Being inside all cozy is great, but the kids get stir crazy, you know, after three months of it.

Conceding: That there are a few areas that I need to work more on in my personal life / relationships. I've had some good conversations lately and pinpointed a few areas that I can intentionally try to work on.

Gearing up for: Our annual (okay, second, but hopefully an annual) trip to Charleston for the Cooper River Bridge Run. No, I am not a runner. No, I do not enjoy it. But spending a weekend with two of our favorite couples sans kids? I will run for that. The 'training' part is more of a joke, really. But I'll give it some semblance of effort. If only it were a 5K.

Procrastinating: Same old thing. Cleaning.

Thankful for: Lots of things. Good friends. A great church. A loyal, supportive husband. An amazing school for the girls. A job where I'm thriving. A mother who is still surviving cancer (and taking us to a Disney resort in March! It's supposed to be amazing for kids with allergies. I can't wait!) Finally getting the girls to co-sleep, getting rid of that crib, and re-doing the girls room! Pictures to come soon!

July 27, 2014

Special delivery

 
 
 
We have been eyeing these special needs dolls from Karens Kottage for quite some time now and finally went ahead and put our order in. I was so excited for Anna to have a doll that looks like her to play with. I think things like this that children can relate to are important for their identity development. We are so happy with 'Sarah'!
 






July 15, 2014

Our Allergy Toolbox


I want to give an update on Anna's allergies and tips we've discovered for allergy management. I know this post may not be relevant to many people, but I am passionate about education and believe that everyone can benefit from this information, so please take the time to read! If you haven't read this blog before, check out this post first, where I outline some of the day-to-day struggles of living with food allergies.

We are going on three years since discovering Anna's life-threatening milk allergy, followed by several other serious allergies. It has taken a lot of time and effort to learn how to best manage them and we are continuing to learn along the way. A month or so ago we had a close call when Anna was accidentally given the wrong milk. Immediately she came to us, heaving. I thought she had gotten some sort of stomach bug until Ben realized what had happened. We immediately administered two Epi-pens (the first one was not administered correctly) and praise God, she was okay. It was a scary, scary incident and reminded us of how vigilant and prepared we have to be at all times. It also taught us some things since this was our first experience with Epi-pens (we have been able to avoid contact with milk until this incident). This is what we learned:

1. It is not always easy to recognize an allergic reaction. I had no idea what was going on until Ben put two and two together. Hacking, heaving, and coughing are signs of an anaphylactic reaction. It is scary because many people (even me) have a hard time recognizing these signs.

2. Giving an Epi pen is not fool proof. You have to hold the pen in for ten seconds in order for the medication to administer. Initially Ben popped it into her leg and then once it retracted he pulled it out. It was only when I questioned whether he held it long enough that we realized the medication had not gone in. If would have been difficult for the average person to know that this had happened. You ALWAYS have to hold the pen into the thigh for ten seconds.

3. Always, always take your child to the emergency room when they have received an Epi-pen. I did not know this and once Anna seemed to be ok, we went about our day as usual (even going to swim lessons that day, which was a big no-no). Rebound reactions can occur 30 minutes to hours later and a trip to the ER is a must, such is contacting your allergist.



Now, on to the tips to make management easier!

1. We created a medication 'kit' that we take everywhere. It is easy to throw in Anna's bag (we almost never forget it now). I purchased a zipper pouch and attached a luggage tag that reads "Anna's Medicine". It's important to make things easy to read for caregivers in case of an emergency. Inside the case are two Epi-pens, an inhaler, Benadryl, and succinct instructions for her care in the case of a reaction. If you get a cosmetic case with a key ring on it, you can hang it on a key rack with your car keys so you remember to take it with you.

(inhaler not pictured)

2. Instead of packing liquid Benadryl and separate dispensers, you can find individual child-size tablets at Walgreens. These are much easier to pack and use.

3. AllerMates make special stickers and jewelry that alert caregivers to a child's food allergy in a fun way. We have their stickers that we use when Anna is going to be in a large group setting, and we put one on her lunch box.


4. Good cookbooks are a must. We've found the most success with the What's to Eat? series because it hits all of Anna's allergies, the ingredient lists are not lengthy and obscure as in most cookbooks, and the recipes are short and easy. The reality is that vegan baked goods do not taste the same as their dairy counterparts, but it's nice to have some options.


5. In terms of food, we have found that Kroger is the best grocery chain when it comes to carrying alternative foods (other than pricier options like Whole Foods and Earth Fare). You must look in their Natural Foods section. They carry most of the things we need- vegan mayonnaise, dairy-free cheese, yogurt, ice cream, Almond milk, dairy-free crackers, cookies and chocolate, etc. The Enjoy Life brand are always free of the 8 common allergens. Annie's makes some good products, as well.

6. Allergy-free and alternative foods cost, on average, three times as much as their counterparts. This is a regular challenge for us. A meal plan is very helpful. Fooducate is also a great app to help with selecting food. A past post on these things here.

7. Homemade isn't always easier, but it's often safer.

8. In terms of lotions and creams for eczema caused by mild food allergies, it is very important to stay on top of the skin. We've had the most success with the following regime:

-Limiting baths and only using lukewarm water.
-Applying Eucerin lotion to the body directly after a bath when the skin is still moist.
-Applying Eucerin EVERY night to the entire body to keep the skin from getting dry.
-Using a steroid cream (Locoid lotion is very effective for us) as soon as problem spots pop up to avoid an all-out flare up.
-Avoiding all other lotions and creams and scented products like bubble bath.
-Using All Free and Clear detergent and no dryer sheets or fabric softener.
-Wearing 100% cotton clothing when possible, especially for bedtime and in hot weather.
-Giving Benadryl or another effective anti-histamine if itching becomes a problem.

9. These are more asthma related but eczema and asthma often come hand-in-hand: keep ceiling fans dusted, wash bedding frequently in hot water, avoid stuffed animals and other dust collectors in bedroom, and use an allergen mattress protector.


I hope this helps some people out there struggling with food allergies! If you want to read all of my posts on food allergies, click on "food allergies" under the "Topics" section on the right of this blog.

May 20, 2014

As life passes us by...


It's hard to believe that Anna is three years old. In some ways life has flown by the last three years while in others it has seemed to trudge on. Such is the ebb and flow of life. I've always loved the book of Ecclesiastes and its emphasis on seasons. With every season for mourning, there is a season for rejoicing.

To every thing there is a season, and a time to every purpose under the heaven.
Ecclesiastes 3:1
 
God doesn't promise us there will be no sorrowful seasons, but that there is always Hope on the horizon, and often this hope is magnified and our reward of glory that much greater because of the sorrow we passed through on our way there.
 
I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead.
Philippians 3:10
 
 
Two years ago this was our baby girl:
 
 
 
 
And here she is today as beautiful, vibrant, and alive as can be:
 
 
 
I'm so thankful for the life God has brought into our lives and for every step of the road in mothering her.
 
Here are some of our latest life pictures:
 
 

 

My first 10K: The Charleston Cooper River Bridge Run


My sister and her new family's visit from Boston.

Cousins and a very happy Kimmie.

Anna's 3rd birthday

 




So thankful for these two 'peas in a fibular hemimelia pod'.



New 'do. Short hair has revolutionized my life. Why did it take me this long to realize this?

Missing Grandma and Pi's bi-monthly visit full of love and attention.

February 19, 2014

Ice storm

It's been a crazy week here in Georgia. Last Wednesday we had a national disaster level ice storm (yes, officially declared by President Obama). Our town was hit the hardest and the governor even popped in for some encouragement. A whopping 80% of the city was without power; some for four days. Thankfully, ours was only out for 30 hours, so we got off the hook pretty easy.

The week prior to the ice storm we had a good three inch snowfall. Again, not the norm around here. Anna played in the snow for the first time and it was fun and exciting for everyone. Being from New York, I'm used to the snow, but seeing things for the first time through the eyes of a child is just as magical as if I'd never felt a snowflake before.

These first pictures are from the snowfall a few weeks ago.






 
 
 
Now, on to the ice storm.
 
 

Our beautiful front tree practically snapped in half from the weight of the ice. Multiple trees fell in our backyard.
 
 

Beautiful from the inside; treacherous from the outside.


No power; staying warm.

Fire and a cleared mantle with candles for some warmth and light.

Staying warm.