Thursday, May 27, 2010

Children's Museum of Richmond



Yesterday the boys and I met up with the playgroup at the Children's Museum of Richmond. Although it was a 90 minute drive each way, it was well worth it! It's an easy drive from Northern Virginia. An hour and 20 minutes down I-95, and then about 10 minutes after you get off the highway. We got there around 10:15, which is 45 minutes after they open. When we first got there it wasn't very crowded at all. We were there before everyone else in our group, so we went ahead inside and got started. By 11:00 it was starting to get more crowded. I started noticing that there were quite a few school/daycare groups there. Although it was getting more crowded, it wasn't overwhelming as there are several different displays, so everything was well spread out.

Cody was immediately drawn to the Ambulance - it was basically a gutted ambulance, with a driver's seat and benches in the back. The kids loved it! It helped that pushing a button made the lights go on. After that he moved on to a car display - they had a smaller version of a car set up that the kids could work out. Change tires, attach a muffler, etc. My husband is a mechanic, and Cody says he is one too - so Cody loved it. The rest of the time there was spent at the different displays - a market with a working cash register, a school room, bank, tv newscasting room (complete with a camera that puts you on tv and a news desk!), water play area, fossil dig site, a cow that you can milk, arts and crafts area, stage and an outside play area. The outside area has ride on toys, hoola hoops, and a beach area with sand and sand toys. There was another display that was closed for renovations, and I couldn't tell what it was.



There's also a play area set aside just for the 3 and under crowd. It was the only place, other than outside, that I was comfortable letting Luke get out of the stroller and walk around. In the other areas there were too many kids, he kept getting knocked down. The toddler area was much more quiet, but had lots of great toys for the kids. A row boat, truck, market stand with veggies, and another area sectioned off that was just for the crawlers in the group. Luke loved it!

Allergy wise, I felt comfortable there. Food is not served, but groups and individuals can bring food in. They have tables in the lobby area and outside. For the groups they have separate rooms where they can go in for lunch. The risk for cross contamination is possible anywhere, so I did my usual wiping his hands with wet wipes and making sure he didn't put anything in his mouth.

Trip to the Gastroenterologist

Last week Luke had a visit with the GI doctor. Thankfully nana was able to watch Cody while we went to the visit, because, well, doctor visits are much easier without a bored four year old!

I immediately liked the doctor, Dr. Peter Lee. As soon as he came into the room it was obvious that he cared. And that, of course, is a big plus. Even better was that Luke was comfortable with him. Luke has been afraid of doctor's offices, even the pediatrician that he has been going to since birth, since his ER visit. He cries, clings to me, tries to get out of the room, and is generally miserable. Dr. Lee let him sit on my lap in a chair away from the examining table throughout the whole visit, and Luke never once cried.

Dr. Lee went over Luke's allergic symptoms, including the ones I had noted since he was two weeks old. Before the visit I typed up a quick time line of the various symptoms I had noticed going back to the beginning. I included it in the stack of papers - growth chart, ER summery, etc - that I gave the nurse. It impressed me that Dr. Lee had taken the time to read it before he came into the room. He asked me about Cody's growth charts (very similar to Luke's - they're both tiny!). Asked me about Luke's reaction to peanut butter. Took a quick look at Luke's hiney to see the scar he has from a bad diaper rash, and the "allergy ring" that he has on his bottom.

Then he asked me what my goal was from being there. I told him that I just want Luke to be comfortable. Luke has always been a happy baby, smiling, laughing, just generally happy. But a child that poops hard pellets more than 5 times a day, has a constant runny nose with major congestion, dark and/or red circles under and around his eyes can't be comfortable. Luke's congestion is equal to if an adult had a cold that lasted for months on end. Just think of how miserable it is to have a cold for a week or two. Now multiply that by a few months. It can't be fun. All of these symptoms have been going on since Luke was just 2 weeks old. His answer was that it was a good reason to be there.

Dr. Lee then addressed Luke's poop issues. First he went into how to make pooping easier for Luke. 1tsp of Miralax to start, mixed with his milk every morning. He explained that it would take a few days to work, since he would still be getting rid of the pellet that were already formed. But once those were gone, the Miralax would add enough water to his poop to make them normal. He said I could reduce the dose if it cause diarrhea, or increase it if it didn't help.

Then he moved on to finding out what is causing the constipation and other allergy symptoms. Because Luke tested positive to so many foods on the patch test (14 of the 19 foods), Dr. Lee wants to do an endoscopy. This wasn't a huge surprise to me. Luke's allergist had mentioned it at his last appointment and I had read about it some on message boards. Dr. Lee explained the endoscopy to me. It's a simple procedure, although Luke will have to be put under. They will give him laughing gas to make him sleep, and then during the endoscopy they will take a couple of small samples of his esophagus. That part will only take a few minutes, and once they're done the gas will be turned off and Luke will wake up slowly. We'll be able to go home the same day, and Luke should have no pain or recovery from it.

Once that is done, they will use the samples to determine if there is any inflammation of the esophagus. If there is, we will have to eliminate some foods from Luke's diet for a certain time period and then go back for another endoscopy. If that endoscopy shows that the inflammation is gone, we'll know that one of those foods is triggering the inflammation. If it's not gone, we'll have to eliminate more, have another endoscopy, and hope that it shows inflammation is gone. It'll keep going like that until they find what is causing it. If we have to eliminate too many foods, he may have to go on a special formula to ensure that he is receiving all of the nutrients that he needs.

Inflammation of the esophagus is referred to as eosinophilic esophagitis. Although I hope to find what's causing his symptoms, I am praying that he does not have this.

Monday, May 24, 2010

Playdates, Impressions and Following Your Heart

I am not a center of attention kind of girl - I never have been. I don't like having all eyes on me, and public speaking makes me weak in the knees. As a food allergy mom though, I can't let myself feel that way anymore. At least not when it comes to my child. One thing I've noticed while reading various message boards and blogs is that there are people who think that food allergy parents are making a big deal out of nothing - that they're just looking for attention for themselves. While I know there have been instances of disturbed people making up horrible stories about their own children, I would imagine that those types of people are a very small percentage of the population.

It amuses me that someone would think that I was using my son's allergy to direct attention towards myself. The last thing that I want is to say, "look at me!". I would be thrilled if I could go to a restaurant and not have to grill the waiter on what ingredients are in the dishes and how the food is prepared. I'd love to be able to go to a play date without having to call attention to the fact that my son will be there, and asking people to refrain from bringing nut products. But I can't. And I won't. And of course I would given anything for my child to not have a life threatening allergy. Who wouldn't?

I have chosen to skip a few play dates over the last couple of months, for no other reason than I wasn't comfortable with the setting. Either they were at someone's house where food was going to be served, or they were going to be in a food establishment where peanut butter was on the menu. I have had a couple of people tell me that I can't let his allergy keep me from social events. Yes, actually I can. It's a matter of a comfort level, and I honestly feel that being as new at this as I am, it's not unreasonable for me to choose to skip certain activities. In the future I may be more comfortable - and I hope that I am - but for now, I have to do what feels right.

I know that some people have the impression that I'm making a big deal out of something that isn't such a big deal. I may have felt the same way in my pre-food allergy life. I believe that only parents who have watched their child go into anaphylaxis over something as innocent as a bite of a peanut butter sandwich can truly understand how life changing it is. Something that you wouldn't have thought twice of before, such as a trip to a local eatery or a play date with a group of friends, suddenly becomes daunting. Risks are around every corner, and while you can't put your child into a bubble and never leave the house, picking and choosing what risks you are comfortable with is perfectly fine.

Do what feels right for you, follow your heart. Don't let the opinions of other affect the choices that you make. People may mean well, but it doesn't mean that they know what is best for you and your child.

Favorite Moments {Lost}

Yes, I'm a Lostie. After missing the first two episodes of the first season, my husband and I decided to watch the 3rd one after hearing people talk about how great the show was. We've been hooked ever since. We had our times of being aggravated by the show, mostly when they would show re-runs and have long breaks in between seasons. But for the most part, Lost has been a true love of mine for the last 6 years. Last night's episode was bitter sweet for me {and many Lost fans I'm sure}. I was so sad going into last night's show - sad that it would be the last new episode that we would get to see. I had grown to love watching Jack, Kate and the rest of the crew. I guess when you watch something every week, for months and then years at a time, you grow attached. But at the same time, it was wonderful to see how everything would come to an end.

I'm not going to go into what I thought of the ending - or what I think the ending means. I just wanted to mention my favorite moments of the last show of such a fun, exciting and entertaining series....

1. Charlie on stage, spotted Claire in the audience. What followed brought me to tears - him watching her, then eventually finding her backstage while she was in labor. Them recognizing each other, hugging and kissing. Such a sweet moment.

2. Jin and Sun learning that their baby was healthy, and memories coming back to them, knowing that they were having a baby girl.

3. Kate: "I love you" Jack: "I love you too"

4. Sawyer and Juliette finding each other

5. Jack talking with his dad in the church - so touching, considering how Jack always seemed to feel he wasn't close to his father.

6. The final group scene - everyone hugging, talking, laughing. They were all so happy.

I need to watch the show again. As with most Lost episodes, I feel like I need to see it again in case I missed anything. There were so many touching moments, I know that there are more that I want to mention. I loved that they spent so much of the show just focusing on the characters. I love you Lost - thank you for such a wonderful series. You will be greatly missed!

Monday, May 17, 2010

I {used to} Heart Peanut Butter

Once upon a time I really loved peanut butter. I mean, head over heels loved it.

As a not so big meat eater, peanut butter was a big part of my daily diet.

Peanut butter and banana sandwich was often my breakfast {or lunch}. PB&J was a favorite. Peanut butter with carrots, celery or apples was a favorite snack. Occasionally eating peanut butter out of a jar was a secret of mine. I loved Peter Pan peanut butter, or Trader Joe's natural peanut butter. I would buy 3 or 4 jars of the TJ's PB at a time, to hold me over to the next trip there.

And the sweets - oh how I loved peanut butter with chocolate. Reece's was definitely a favorite. Chocolate and peanut butter pie. And of course just peanuts by themselves - Snickers or ice cream with chopped nuts on top.

When Luke's reaction happened, it was a complete shock to me. Peanut allergies don't run in our family. My four year old was almost as big of a peanut butter lover as I was. He had recently discovered how much he adored my beloved peanut butter and banana sandwiches. So when Luke's reaction happened, I felt almost betrayed by the peanuts. How could they do that to my sweet boy? How could something that was as seemingly innocent, and tasty, as peanut butter put him into such distress? Oh peanuts, how I despise you now.

All peanuts/tree nuts are gone from our house. I occasionally still find something {such as the Wilton cake decorating products I found this weekend} hiding in a cabinet. In the trash you go! You're not welcome here anymore. When I see nut products anywhere, my heart immediately skips a beat. It doesn't matter if it's me walking through the produce section with Luke and we happen to pass a display of peanuts. Or if it's just me seeing a picture of a sundae with nuts on top. My immediate, not even thinking about it, reaction is - BAD!

I'd like to say that I haven't had anything with peanuts in it since his reaction. I'd be lying though. About a month after the reaction, my husband and I went to dinner and a movie for our anniversary while my parents watched the boys. That day, I bought a pack of Reece's PB cups at the grocery store, and hid them to sneak into the movie. I felt like a villain when I bought it, like I was committing a crime. During the movie, I opened the package and immediately felt guilty. I was eating something that could be life threatening to my son. How could that be ok? I can honestly say I didn't enjoy it much. When we left the theater, I threw the wrapper away, and couldn't stop thinking about how I had peanut residue on my hands and mouth. Even though I wouldn't be seeing Luke until the next afternoon, I felt horrible.

Friday, May 14, 2010

Best Part of the Day

I've started asking my four year old, Cody, what the best part of his day was when I tuck him in. Wednesday night his answer was, "leaving the house". It's been one of those weeks where we didn't do much. Both boys and I were getting over colds, so play dates were out. The weather wasn't great most of the week, so getting out wasn't really enjoyable anyway. Before today, our two big trips out were to Target and Safeway, whoohoo! Today my parents dropped their dogs off as they're heading out of town for the weekend. They asked Cody to take care of them while they were gone, and Cody took it very seriously. While I was changing Luke, Cody managed to get into the dog food cabinet, and filled up a couple of bowls for our four-legged house guests. I had to explain to him that it wasn't the food they were supposed to eat, and that it was too late for their breakfast, and too late for their dinner. He was heartbroken. I promised to let him feed them dinner tonight.

We got out of the house and walked the mall - Cody got to check out a few new rides and play with some kids, and Luke managed to shoplift half a pair of Crocs {luckily I noticed before we got to the car and was able to return it}. Once home, Cody mentioned several times that he wanted to feed the dogs "all by myself".

He couldn't quite do it alone, but he finally got to feed them about 20 minutes before bedtime. While I was tucking him in, I asked him what his favorite part of the day was. I expected getting to see nana and papa. Or the new rides, or meeting new friends. Or even finding out that we were unknowingly accomplices in Luke's Crocs theft ring. But his answer was, getting to take care of the dogs. I love that little dude.

Thursday, May 13, 2010

What Not to Do {excellent article}

I came across this article, What NOT to Do When Your Child is Diagnosed with Food Allergies via another blog this morning. I found it to be an excellent article. I can relate to square 1 and square 2 mostly. In square one she mentions
If it is an act of self-care to decline invitations for awhile, or if you’re just not up for taking a vacation that first year, then so be it.
Yep, that's definitely me! I find it hard to accept invitations for certain playdates right now. There was one that we were going to go to this week where a mom mentioned bringing a PB&J for her kid to eat before she had to take him to school. The rational side of me knew that it probably wouldn't have been an issue. I would have kept Luke away from the child, and that would have been the end of it. But the scared mama in me said NO! Obviously I can't always control what food items will be around Luke, and there will be times that I'll have to deal with it. But I just wasn't ready for that, and it felt good that I still have control over it.

Square Two is characterized by dreaming and scheming. At this point, you’ve truly acknowledged that the old life is gone forever. Here, parents have absorbed the initial shock and they wander how they will make the new life work.


I have moments of this. I don't know if I've truly acknowledged it, but I have come to understand and realize that the old, more carefree as far as food goes, life is gone. And I definitely wonder about how to make this new, less carefree, life work. I do plenty of scheming on how to make playdates safe and fun. How to handle going out to dinner with food allergies and for it to not turn into an emergency room trip.

I do wonder though, if I will return to square one in the future, when Luke is older. Right now I have what is pretty close to complete control over his safety. I'm a stay at home mom; he's with me 24 hours a day. He's just starting to walk, so when we're out with friends, he doesn't stray far from me. He's a mama's boy anyway, so he would stick close to me either way right now. But what about the future? What will a year from now, when he's 2 1/2 and wanting to run with his friends and be more independent, bring? What about 2 years from now when he's ready to start pre-school? I'll again be faced with dealing with new things. Grieving that I can't let him go and do those things without worrying about his well being.

Monday, May 10, 2010

Comfort Zone {finding one and being ok with it}

Being as new as I am to food allergies, I'm constantly learning new things. My most recent lesson was in comfort zones. Last month my family and I were invited to spend a week at the beach with another family. This is a family that we have known for a long time - the parents went to school with my parents, and I grew up with their kids. We've all vacationed together before, the last time being when I was pregnant with Luke. But this time is different. My first reaction was, great, that will be fun! My second reaction? Oh no, I'll have to worry about what food is in the house. I know they would do their very best to ensure that there weren't any unsafe foods brought into the house. But we're talking about nine people that don't have to worry about what is safe and unsafe on a daily basis. Nine people that probably aren't as knowledgeable with cross contamination risks. And, four of those nine people I don't know as well as the others, and I really don't know if they would take it seriously or not.

I was really torn. I wanted to go. But the stress of the food issues weren't something I was looking forward to. There were other issues brought up on whether sharing a house with them would be a good idea {a house full of fun loving, staying up late adults with two small children and what to do with my mom's aging dog that she was not comfortable leaving at home}, and in the end, we decided to not share a house.

Then a great idea came up - could we find a house close to theirs that we could have on our own? A house that would allow my parents to bring their dogs? YES! We did! So we're going. I will still have to be extra diligent about food around Luke, as we'll still be spending a lot of time with the other family, and I'm sure eating with them at times. But at least this way I know that there is a safe place where I have 100% control over what food is around him. Plus a quiet place for nap and bed time.

Thursday, May 6, 2010

{Semi} Crafty Mama

So I want to be crafty. Like, REALLY, want to be crafty. I look at different ideas online and in magazines and think, ooh, I could do that! But then I never do. Because I've convinced myself that I'm not a crafty person. But honestly, I have no idea if I am or not, because I've never really tried. I've made a vow to myself though to start trying these things.

Recently I came across a thread on Diaper Swappers {yes, I'm a CDing mama} about upcycling. I spent a couple of hours going through the many pages of the thread, looking at things that people had breathed new life into. It inspired me to start keeping an eye out on craigslist and freecycle. Sure enough, last night a message came through on freecycle offering a queen size brass headboard. I've been wanting to add a headboard to our bed, but haven't wanted to spend the money on it. So, perfect! My husband picked it up tonight...



It's a little beat up, but it's not in bad condition. One of the globes fell off and broke when my husband was putting it into his truck. Which is ok, because I would have probably removed them anyway. I plan to spray paint it - maybe brushed nickel. Or maybe a dark color. I haven't decided yet. Our room is mostly light green with some brown, and our furniture is a darkish brown stain. I'm not sure what to do with the globe that is in the middle of the frame, I'll probably paint it too.

My other project for today was a onesie for Luke. I got the idea from Family Fun magazine.




Not exactly a difficult craft, but it was fun {and cute}!

Wednesday, May 5, 2010

Decorating

We've been in our house for almost 7 years now, and there are many parts of it that still aren't "done". I'm not a decorative kind of girl as it is. Add in that we never planned on being in this house for very long, and I just never got motivated. I'm trying to change that though, since it looks like we'll be here for a bit longer {thank you crappy housing market!}.

I'm relatively happy with Cody's room. A couple months before Luke was born, we moved Cody from the nursery to what was then a guest room and is now his big boy room. He did SO WELL with the move, I was impressed. We did his room in a truck/cars theme. Hit the Road bedding set from Target. Dump truck canvas painting that I found at Burlington Coat Factory. Dale Jr. poster from the September 2009 Richmond race that Ryan and I went to, and a Cars movie poster that Ryan found at work one day. My mom made navy blue window valances, and I found a navy blue bed skirt. It's not quite done {and is often way messier than I like}. But I think once I add a couple more pictures to the wall I'll be happy with it. I am toying with the idea of a chair rail and painting the lower half of the wall navy blue though.


For Luke's room, I want to do major work. When we moved Cody from the nursery, I kept most of the babyish decorations. Cody's theme was teddy bears. I used a lot of his decorations and added to it to make a stars and moon theme for Luke. It was cheap {I was on a major budget} and easy {I was very preggo, chasing a 2 year old and generally lazy}. I'm ready to make it look more like a toddler's room though. So I did some looking around at Pottery Barn Kids and found a super cute train bedding set. I'm not one to buy an entire matching set, so I bought crib sheets, a dust ruffle {from another bedding line}, and a pillow case for when I'm ready to put a pillow in Luke's crib.




I'm excited about getting out and looking for other train items to add to the room. I already have a train that spells out Luke, that I'm going to repaint. I'm going with a light blue and red color scheme, one of my favorites. I'm looking forward to blogging more about this as I work on it!

Tuesday, May 4, 2010

ALS and BLS

I learned something new tonight. There are two different categories for an ambulance. It will either be an ALS (Advanced Life Support) or BLS (Basic Life Support). BLS typically do not carry epinepherine, while ALS does. ALS is better equipped to deal with anaphylaxis. When I spoke with the EMT near the weekend home a couple of weeks ago, she mentioned ALS. I had no idea what it meant, and kind of smiled and nodded like I did know. So, according to her, my parents' weekend house has an ALS paramedic less than 5 minutes away. Good to know!

Monday, May 3, 2010

Frustrated

I came across this video today from Food Allergy Initiative. It is a group of 6 parents talking about their children's life threatening allergies to nuts, milk, etc. It's not a long video, but it does a good job touching on what it's like to see your child experience anaphylaxis, what it's like worrying every second of the day about your child, what it's like working around food allergies.

"I'm frustrated by people who don't want to understand it"
"It's really difficult to get someone who doesn't get it, to get it"

As someone that is new to being the parent of a child with a life threatening food allergies, these quotes from the video really spoke to me. On one hand, I understand - because before Luke's reaction, I didn't know much about it either. But on the other hand, it's frustrating to have people that know me and my child be so resistant to realizing how scary his allergy is.

I have had enough of people assuming that his allergy means a runny nose, tummy ache or other minor irritations. My wish is that the people closest to us would take the time to listen and learn. If they would do that, they would understand how serious his allergy is. And would understand why I do the things that I do, or why I feel the way that I feel. Stop labeling me as an over-protective parent. Because I'm not. I'm no more protective than any other parent that has had the misfortune of watching their 15 month old child struggle to breathe, worrying that their child may not make it, would be.

Sunday, May 2, 2010

Praise for Firehouse Subs

On our way home today we stopped at Firehouse Subs in Fredericksburg, VA for lunch. It was our 2nd time going there since learning of Luke's allergy. I had labeled it "safe" because the only nut products are cookies that are made off location and individually packaged, and peanut butter sandwiches on the children's menu. The first time we stopped there, it was for dinner. The manager was helping prepare the sandwiches, and I told him about Luke's allergy. He didn't say much, but did say that it wouldn't be a problem.

Today when we stopped I didn't see the same manager, but the lady working the cash register was wonderful. I ordered grilled cheese kids meals for both boys, and immediately told her that Luke was allergic to nuts. She asked if both boys were - and put into the computer that 1 was allergic and 1 wasn't. She informed me that there hadn't been any orders for PB sandwiches yet that day, so the contamination risk was extremely low. When our sandwiches were brought out, we learned that Luke's sandwich was being prepared separately. They used all new utensils, etc, to prepare his. It meant waiting an extra few minutes for his, but obviously that wasn't a problem. Right as we were finishing up the cashier came out to tell me that a family sitting near us had ordered a peanut butter sandwich for their child. Their food hadn't come out yet, but she wanted to let me know in case he was sensitive to the smell of nut products. I wanted to hug her. I honestly don't know if he is or not - we haven't experienced that kind of exposure yet. But for her to take the time to tell me that was amazing.