26 February 2009

rough patch...

You'll have to forgive the "bummer" nature of this post but I really need this space to vent...

It has been a roller coaster week for me. As many of you know, my infant daughter, Matilda "Tilly", was born with health issues. She spent a month in Children's Hospital and has already had surgery - a fundoplication - and was fitted for a g-tube. It seems that with "special needs" children (and it has taken a while for me to truly embrace that label), it is always one step forward, two steps back.

Tilly is doing very well with her feedings. We have discontinued any tube feeding, including her overnight feed. She is taking all her bottles and has even been introduced to rice cereal with the aim of starting purees soon. GREAT!

However, we are still addressing a few areas of major concern:
* her vision/eyes
* her "developmental delays"
* her dexterity
* her strength

Last week we went to the pediatric opthamologist. I have been concerned with Tilly's eyes every since birth. For the first month, she didn't open her eyes hardly at all. Now she has 'droopy eyelids' which we now know is a condition called ptosis, her pupils are fixed (don't dilate) and a lazy eye which all effect her vision. Most likely this is caused by nerve paralysis possibly brought on by birth trauma. The pediatric opthamologist told us that her eye anatomy is good. We have to patch her eyes alternatively 2 hours each day. She hates being a pirate! He wanted to see her back to see if the nerves recover or if it is a permanent condition.

This week we went for our neurologist check up. The doctor immediately said her eyes concerned him (duh!). He is unsure how much she can see and or how clearly the images are for her. So he ordered a MRI and a VER - visual evoke response test and an ERG - electroretinography test to see how much stimulus is reaching her brain and if the information is being passed along. The MRI is to get to the bottom of her condition. We originally were told she had Dandy Walker Syndrome - however, now he does not think this may be the case. She definitely has a congenital brain condition but he is unsure of a diagnosis.

I am delighted that we will finally get some answers and to know what we are dealing with but at the same time, I am terrified. I have researched these tests and have found references to Muscular Dystrophy and Multiple Sclerosis. Again, I am conflicted because while those conditions have a lot of research and information that has been conducted, they can also lead to a shortened life span for those afflicted with the condition.
The other bit of news came on Thursday when I took Tilly to have her physical therapy evaluation. We have been receiving home health therapy sessions and are now moving to the rehab center on an outpatient basis. After our evaluation using the Peabody Development Motor Scales, I learned that my 5 1/2 month old is developmentally at 2 months.

I knew in my heart that she wasn't where she needed to be. She still doesn't "push up" on her arms when placed on her tummy, she doesn't roll over, and can't sit up. She doesn't grasp toys or play with her toes. She is still working just to hold her head up consistently. But actually hearing it said out loud - that she is developmentally delayed - hit me like a ton of bricks.
It sounds silly but all those "normal things" you do to celebrate your baby's life are odd for me. I can't keep a baby book because she isn't hitting those milestones. What do you put in the first month pages? Ummm, didn't open her eyes, had 4 seizures, could only visit her in a sterile hospital environment... ??? You can't talk about her "coming home" outfit after her birth because she didn't get to "come home". How do I fill out that she is going to roll over probably at 8 months not as 3?
The other odd thing is trying to explain it to strangers. People see Tilly in her car seat asleep when we are out and she doesn't appear to have anything "wrong" with her. Even when she is awake we constantly hear "Oh, bless her heart, she is trying to wake up" or "she is about half asleep". "Every time I see that baby, she is asleep? Is that all she ever does?" No, it's her eye condition - she is fully awake but just can't open her eyes all the way. Rather than making them feel bad, I just don't say anything.
If I am holding her and her head is floppy, I know people are thinking "she should be doing this or that"... I wonder if people think I am a neglectful parent because my child is not where she is supposed to be. How do you explain? Do you explain? I don't want to make people uncomfortable...most of the time, I just smile and then cry silently to myself because I am reminded again that she is not "normal".

One of my other frustrations is not knowing exactly what the future holds or having realistic expectations for Tilly. There are so many unknowns that I can't prepare myself mentally for what lays ahead. With children, we are always looking to the future - planning for their college fund, imagining their first day of kindergarten, etc. I don't know what exactly Tilly will be able to do in her future.

So many of our friends and friends of our extended family have been supportive. They have cut all of us slack as we struggle through this. Fiona has acted out recently because Tilly is getting so much attention. You know how kids are - any attention is better than no attention! It is hard to make Fiona understand that she is loved as much as Tilly but that her sister just needs some extra help now. There are so many people that are kind and compassionate having empathy for our plight and understanding that we, as a family, have good days and bad days because of this situation. Friends of my parents have sent cards, put on us on their prayer lists at church, and called to check on us. It means a lot. I guess I, too, am more empathetic because of our situation. I tend now to overlook things and "not sweat the small stuff" because I know there are bigger things to worry about. I tried to be more compassionate even with those I don't know because I never know what is going on in that stranger's life. S/He, too, may be silently struggling.

While it sounds like I am in a funk about all this, I do truly know how blessed we are. Matilda is so much better off than we imagined. She smiles, coos, and "talks" constantly. She even laughs out loud. She will get better - she is progressing. I believe she will be able to enjoy a quality life. She is fortunate to be receiving such good medical care and is getting all of her needs addressed so early on. I only need to look around one of the waiting rooms at her many doctor's office appointments to see how lucky we are to have a baby who is 'well off'. She isn't dependent on breathing tubes. She is alert and conscious of her surroundings. She has a family that adores her and can't imagine life without her.

The physical therapy evaluator told me the other day (after I broke down in sobs in front of her), "Honey, God gives children with special needs to Mommies and Daddies that can handle it and take good care of them". She was very kind. So now I am re-focusing and looking upon this situation as a gift. God trusted us enough, thought of us as "good enough" to handle all of Tilly's challenges. I guess you can say, we have won the baby lottery.

22 February 2009

innocence celebrated

(photo from Children on the Green)

One of the things I love about having children is rediscovering the innocence. At this young age, most children are devoid of cruelty, racist attitudes and our adult cynicism. Fiona loves her friends and on any given day she announces to me that she is going to "marry Anabel" or wants to have Tyler, Douglas, Ian and/or Nicholas over to spend the night and "sleep in my bed". I smile as I realize that soon she will be "tainted" by society and all its judgments. I am sure those of you that have children have sweet memories of your children walking hand in hand with friends from all different ethnic and socio-economic backgrounds. Wouldn't it be a better world if society didn't 'get to them' and tarnish that innocence?

Really there is a point to my ramble today... I guess I have been thinking about these things because Fiona had friends over on Saturday afternoon. The group was a mix of girls and boys. Having two girls, I am always amazed at how truly different the genders are - they play differently, they communicate differently, etc. It starts so early! I delight in seeing Fiona "get tough" with the boys. Fortunately, the girls rubbed off on the boys, too, as demonstrated in this photo...
The girls, of course, wanted to dress up as princesses. It was sweet when Nicholas requested a Belle costume because he, too, wanted to be pretty. After a little digging, we found costumes for both Nicholas (a sweet fairy) and Ian (pretty flower girl). Look at the smile on Nicholas and isn't Ian so poised?!? They enjoyed it so much, they cried when they had to take them off. We laughed that Ian's little brother, Charley - not yet 2 -, wanted no part of the festivities.
Nicholas and Ian's behavior is not unusual.

Apparently, loads of boys don tiaras, boas, and frilly costumes during their preschool years as they learn about gender roles and what is acceptable. I think it's interesting that we think nothing of a girl being a 'tom boy' (my daughter included) but it gets a bit 'troublesome' when the shoe (or glass slipper?!?) is on the other foot. I have no doubt that Ian and Nicholas will grow up to be "men's men" and break the hearts of many women the world over. But for now, I will smile at the memory of all them twirling in my living room singing "Bippiddi-Boppidi Boo".

18 February 2009

Fifi le Chef

I have a good friend who read Gary Chapman's book "The Five Love Languages" and was chatting with me about how getting to know child's "type" can help you be a better parent. I was intrigued so I read up on it and decided that Fiona is definitely a "quality time" kinda girl. She is happiest when Marcus and/or myself give her undivided attention and listen to her extravagant stories.

Now cynics may say "well, don't ALL children love quality time with their parents?!?" to which I say "yes". However, as I read through the other love languages, I found that Fiona is most motivated and rewarded with an outing with her family or a promise to "do something" together.

Knowing this, we have been finding new activities that we can share with Fiona. One of the things she loves to do the most is "cook". While I am definitely NOT the cook in the family, I have even jumped right in and have enjoyed spending time with Fiona in this way. Our favourite thing to make is muffins. Chocolate chip muffins, strawberry cheesecake, orange cranberry, you name it, we mix 'em up. She loves to bake with her Gigi and has made some wicked good cookies and a nice cake when she has visited. The other night, Marcus was making dinner and Fiona wanted to help. Marcus found a great job for her - "snapping asparagus" to put in our chicken, asparagus risotto.

According to the UK website Kids and Nutrition, getting children involved in cooking:

*encourages healthy eating habits and fostering a love of good eating (The American Heart Association includes family cooking sessions on its list of "Top Ten Ways to Help Children Develop Healthy Habits.")

*helps to set their children up for the future

*teaching responsibility and sharing domestic tasks

* helps with "fussy/picky" eaters as children will usually eat something they have cooked

Other benefits:

* encourages the development of basic motor skills, coordination, and the importance of process

* is an opportunity for mathematical learning and scientific method

* introduces different cultures based on the type of food your prepare

Personally, I know that having Fiona help us cook has indeed introduced her to foods she probably wouldn't try on her own. I have tried numerous times in vain to get her to eat asparagus to no avail. Imagine my surprise when I popped into the kitchen and found her chewing on raw asparagus stalks. She even wanted to take some for lunch the next day!

She also "opens up" when we cook. She is more likely to talk to me about her school day and share her thoughts and feelings.

Cooking with Fiona is always fun. We are even considering taking her to our local Young Chefs Academy. If you have little ones, I would love to share with you a few links I found which contain child friendly recipes. Bon apetit! :)

Fruit and Veggies More Matters
BBC's Cooking with Children recipes
Easy Recipes for Kids
Kids Cooking Activities
Kid Food: Rachel Ray's 30 Minute Meals for Kids

13 February 2009

Happy "Valentime's" Day!

I actually think Valentine's Day is over-rated. So much pressure put on people to "show their love" during this one day of the year. It is really nothing but an opportunity for Hallmark, Stover's and the floral industry to make a mint. Really I am a romantic at heart but wouldn't it mean more if your loved one bought you a plant (something that lasts and helps the environment!) home one random day to surprise you rather than mortgage the house for those sterile red roses that are only going to be thrown away?

Alas, I am not completely cynical because I am now re-discovering the joy of Valentine's Day through my little Fiona. She was so excited to bring home her decorated tissue box yesterday to read through the notes. Amongst all the Transformer and Hello Kitty themed sentiments, I am sure Fiona's Valentine's stuck out. Why? Because, once again, we used the occasion to educate and spread our message of protecting the environment....

Fiona gave Endangered Species line of Valentine's Day card. The valentine's are printed on Green Seal certified paper using 30% post consumer recycled paper. The cards feature precious animals with messages such as:

* You make my heart leap.. (featuring the tree frog)
* You’re my mane squeeze. (featuring the lion)
* A little birdie said you should be mine. (featuring the sandhill crane)
* Have a grrrrrreat Valentine’s Day. (featuring the grizzly bear)

and also contained some fun facts about the animal featured. Each card was accompanied by a Endangered Species milk chocolate love bite.

Fiona loved giving the cards because she is an animal lover and they had corny/goofy jokes. She also liked that the cards were "kind to the Earth". I loved them because giving them spread a good message AND supported a great company. Endangered Species Chocolate gives back 10% of their profits to help support species, habitat and humanity. All of their chocolate is also 100% ethically traded from shade grown cacao grown on small family-owned properties. While I wish that they would give a bigger percentage of their profits, it still beats Hershey's hands down, eh?

I hope next time you have an occasion to give chocolate (birthday goody bags?, etc.), you will consider Endangered Species Chocolate.

05 February 2009

Fabulous "fuzzy friends"

I tend not to buy stuffed animals/cuddly toys/"fuzzy friends" (as my Fiona calls them) for my girls but I just couldn't resist scooping up one for little Matilda recently on a trip to Target. Whilst we were strolling down the aisles looking for eco-friendly birthday presents for Fiona's upcoming birthday parties, I spied the new My Natural all-natural toy line from miYim organic toys.

I have seen miYim toys before and even added a few of their toys to my registry from Babies 'r Us. However, their line of organic toys previously out on the market were a bit pricey. The new line of My Natural toys are green AND affordable!

I snagged the cute little owl for Matilda (pictured second from the left above). It was definitely a hit with this eco baby! The cost of this new environmentally friendly friend - $4.99!!! The line has a variety of sizes - smaller friends and bigger friends dressed in natural clothing - all reasonably priced for parents on a budget!

So why are the Stapletons fans of the My Natural line? Well, My Natural toys are:

* 100% non-toxic - made from all natural cotton
* coloured using low eco-impact dye process - PureWaterWash technique
* minerals and soy colouring (dyed using plants!)
* the company is a supporter of fair labor ethics

I did a little research and found out that the line was released in Great Britain late last year. The toys were well received not only for the environmentally friendly properties but also because they are kind to baby's sensitive skin and good for allergy and asthma sufferers. In the US, Target has the rights to sell the line exclusively in their stores. Unfortunately, they are not yet available on Target.com.

Several other green parents with blogs have reviewed the dog and bunny and the overwhelming consensus is a big "green thumbs up" for the new My Natural toy line. I have several upcoming baby showers and I believe this product will find its way into my usual green baby gift basket.

Look for the toys in a Target near year and let me know what you think!