I’m Trying to Get My Groove Back

For the last two and a half weeks I have felt disjointed, lost, thrown off schedule and totally absent minded. Its like I am wandering in a brain fog. Have you ever had a great schedule where you were able to get things done and felt like you actually accomplished something, even if you didn’t get everything you wanted done? Not too long ago I felt that way! Ever since we came down with colds I feel like I haven’t been able to recoup my “groove.” I’m trying to get my groove back and I’m finding it very difficult. Not just that, but before I caught a cold, I felt like I had to work really hard to get everything done and just let go of the things I couldn’t complete for the day.

I spent a good portion of November and December of last year coming up with my writing roster for 2009. I had everything planned out, and I knew exactly what I was going to write about and when I was going to post it. I even gave myself a little wiggle room just in case something happened that was more pressing or if I had to take time off from my writing. But now I look at the plans I made and none of it looks so good to me anymore! I made my plans for 2009 in 2008 when I was still living in Maryland and I think its time to get a new groove on.

Back then, Dom was with us every day and life always flowed better. I have to restructure my time since he isn’t here. I was beating myself up wondering why it seemed like I could never get everything done, and then I realized that the most supportive person in my life is 2,000 miles away from me. Also, in the last week and a half I have created two new websites; one for Simmi and one for my husband. I’ll be sure to put up a link to his site as soon as we are ready…we’re still adding some things to it.

So I need a new groove. It’s been close to three weeks since I have been able to just sit and read my favorite blogs or even done anything just for me. Tomorrow Dom will be coming home until Sunday and it will be a great time for us to sit down together and talk about a good direction for me to go in. I definitely need some guidance in that department lately, because I feel like I am running on auto-pilot. I need to figure out how I can efficiently create time between my work online, my family life, and my “me” time. I need that.

Simmi can be very unpredictable, the kids need to do things, I need to write, I need to consider business opportunities that I have been putting off and haven’t come to a decision about, the house still needs more done to it and I need to start thinking about my life as I more closely consider going to the raw food lifestyle. That is a dynamic shift and one that takes a fair amount of time each day as well. My struggle with raw foods right now is the fact that Simmi has multiple food allergies, and I can not bring nuts, legumes or seeds into the house until I know for sure that she isn’t allergic to them. If a person is allergic to peanuts, chances are they are also allergic to tree nuts and other legumes. If she is in fact allergic to other legumes and tree nuts, that cuts a significant amount of protein out of my diet and that could spell disaster. On a raw food diet, a lot of protein is not necessary, but having some is important. If she is allergic, I can have none. I’m trying to work all that out as well. And last but not least is our beautiful back yard. I haven’t even begun to plan out what we will plant as far as fruit trees, veggies or flower. I fear that I will miss the growing season this year. I know that I will still be able to plant fruit trees, but I was really looking forward to also having a nice little garden.

I am hoping to feel totally refreshed by Monday and hopefully armed with a new plan and direction for my complex and totally blessed life.

Bald Beauty of the Day

I’ve Launched a New Site

I’ve launched a new site called “Loving Simone”. There is so much to her care and to her story that I thought it would be better to have a blog site dedicated to Simmi.

The picture on the left of the owl is a part of the theme that I purchased for her site, but I really don’t know much at all about what I need to do to customize the template. In a few months when I have some extra cash I’ll get someone to do it for me.

The template that I have is just darling, and I was really disappointed that I would have to launch the site without it. In the mean time I downloaded a nice clean template that will stay in place until I can have someone work on the Wisdom Tree template. Here is a screen shot of what “Loving Simone” looks like right now:

I have reposted a few of the articles that I wrote about Simmi onto Loving Simone, and now that her site is launched, I will be adding new content about her there with smaller updates about how she is doing on Alopecian Muse.

Loving Simone will go into detail about all things Simmi! Videos, photos, recipes for food allergic children, her medical care and much more. Make sure to stop by and say hi!

Here is a screen shot of what Simmi’s site will eventually look like:

Multiple Food Allergies in Children

Multiple food allergies in children pose a unique challenge to parents, caregivers, daycare centers and schools. Parents of children with life-threatening food allergies are often looked at as neurotic or some how unglued, and may view such a parent as being too “over protective.” I fall into that category with my grand baby Simone (Simmi). Simmi is highly allergic to peanuts, milk, soy, wheat and eggs. We need to get her tested for other foods as well. My hope is that she will outgrow these allergies, but if she doesn’t where does that leave her in her young life? She is at the point where she is curious about other children and she has actually made progress in approaching little ones while we were shopping last week. Simmi is starting to seek other children out and is now making eye contact and smiling at them if we see them while we are out and about. My heart breaks just a little right now because she needs to have that social interaction with other children her age and yet I can’t bring myself to set up a play date for her. Why? Well, I would turn into some sort of neurotic freak and that isn’t the way to build good relationships with other mothers. No matter where we go, we are always bombarded with food. I couldn’t take her to Chucky Cheese or Peter Piper Pizza because she can’t eat a single thing there, and god forbid I did take her there just to play and she picked up a piece of bread or pizza and decided to eat it…disastrous! Then there are those fun play groups where moms get together and have their kids play. They bring all their children’s nutritious snacks of Cheerios, Kix, peanut butter and jelly sandwiches, tuna sandwiches, nutter butters, cookies, Gold Fish, crackers, cheese bites, nuts and fruit, yogurt, macaroni and cheese…Simmi can’t eat any of these things. You would think that wouldn’t be a problem, but what if I turn around and some cute little kid decides to offer such things to Simmi and she gladly accepts it and eats it? And we know that little ones aren’t the most careful when it comes to eating, meaning that a lot of food ends up on the ground. Can you see me walking around like some sort of food police and janitor making sure that the perimeter is safe for my little girl? It isn’t other peoples responsibility to keep my girl safe and to put such unrealistic expectations on them would be wrong.

Simmi has never tasted a cookie, pasta, regular bread (she has tried rice bread), cake, candy, kids cereals other than Rice Chex, milk or cheese. There are lots of books on gluten free cooking but they end up containing eggs or milk in the ingredients. It is a daunting task at best.

So what should I do about this road block in our lives? We don’t ever bring peanuts or eggs into the house, and if we do eat something that she is allergic to, we do so when she is napping or in another room, making sure that afterwards we clean up our area well so that not even a crumb can be found that could cause a reaction in her. Is that too extreme of us? Not if you consider that if we are not careful we could cause her extreme pain or even death. So I ask the question again…is that too extreme? For the first time in Simmi’s young life she has been eczema free for two weeks. Ripping out the carpets to cut down on her allergy to dust mites has helped her to be more comfortable. Over the last three or four days she has also started to eat regularly for the first time in her life. To see her sitting at the table in her little booster chair eating blueberries, pears and Rice Chex in the morning brings tears to my eyes. Watching her eat carrots and asparagus and potatoes in the afternoon is a major accomplishment and witnessing her eat broccoli, cauliflower and sweet potatoes at dinner fills my heart with pride. Every few days we are adding new foods to her diet and she is finally interested in eating again. For the first time on Saturday she drank grape juice from a sippy cup. After 13 months of struggling to get her to eat anything at all, and with the trouble she had swallowing and even forgetting how to chew, it is a celebration every time she takes a bite to eat.

Where do I go from here? I have been considering taking on the task of being a specialized child care provider. I know there are other parents out there that need to work and have similar problems with their little ones. I want Simmi to have some playmates and build good social interaction skills and I think this could be the solution to our dilemma. I know that she would enjoy having children in our home everyday to play with and it would make me feel good knowing that I am providing an environment that is safe for other children like her to grow and flourish.

My husband and I are seriously considering this option and as we look at how to structure our home to make it suitable for more little children to be here during the day, we are finding ourselves getting more and more excited about all the possibilities.

Our Grandbaby Simone

Simone (we call her Simmi) is our first grand daughter and light of our lives. She is 18 months old and has suffered since birth with multiple health problems and extreme pain. Life has not been easy for my little bundle of piss and vinegar, but I do all that I can to make her life more enjoyable.

Imagine coming into the world, and just a few days after coming home from the hospital, your skin starts to blister up and then dry out and fall off. The pain of touching her skin would send her into blood curdling screams. This was the beginning of my journey to find the correct medical attention and comfort she so desperately needed. Taking her to the dermatologist brought grief as the doctor looked at her for five minutes and proclaimed “She just has severe eczema, put some Triamcinolone on her skin when she needs it, give her a TEASPOON of BENADRYL daily, and I will see you in three months for a follow up.” REALLY? Is that all? Her skin was falling off and it’s weepy, bloody and oozing and all you can tell me is to put a toxic medication on this newborn baby? I asked if there was anything else that could be causing it…his response will forever be burned into my mind when he said to me “There is no use trying to figure out what is causing her problems…you will never find the answer, so why try?” What an idiot. It couldn’t be the formula she was drinking right? Or maybe something she was allergic to in the home? Why give her a whole teaspoon of Benadryl? When I asked about the amount of Benadryl he said “Well, try a teaspoon and if she passes out from it, just reduce the amount she needs.” OMG! I couldn’t believe the reckless advice he was giving me. I knew she was allergic to something, but we hadn’t taken her to the allergist yet to figure out what it was, and yet this doctor’s answer to my grand daughter’s problems was supposed to be solved by a tube of ointment and a bottle of Benadryl.

It took faithfully putting this toxic ointment on and loading her skin with Vaseline to keep her skin from drying out, three to four times a day to finally get the problem under control. Now her skin has a few patchy problems, but she is doing far better than in her ealy days of life. Was he right in the advice he gave? Yes and no! Sure the Triamcinolone cleared up symptoms and the Benadryl also helped with out breaks, but the man was crazy to tell me NOT to search for the cause of it in the first place. I guess that was how he stays in business huh?

These are the other problems that Simmi has had to endure, and to spare turning this particular blog entry into a novel, I will just give the highlights:

• Skin problems
• GERD
• Severe constipation
• Neurological problems
• Multiple food allergies (she is allergic to peanuts, milk, eggs, wheat and soy)
• Allergic to dust mites
• Sensitivities to latex and many different fruits (has tested negative for latex allergy)
• Problems eating and swallowing foods
• Sensory problems
• Diagnosed with a speech disorder
• Developmental delays

From the time that she was born until we moved to New Mexico, this child has suffered. When we lived in Maryland, Simmi was enrolled in an Early Intervention Program called Infants and Toddlers. Specialists come out to the home of a child, evaluating whether that child should receive help and sets up goals, giving parents or caregivers tips to help children reach developmental milestones. They felt that Simmi would benefit from this program and we had a physical therapist, occupational therapist and a special teacher help her to walk, use her hands better and to try to get her interested in discovering what a toy can do. Simmi wasn’t interested in toys very much. She was more interested in wandering around once she learned how to walk. She made very nice progress by the time we were set to move to our new home.

When we moved to NM, there were some changes that happened almost immediately. She began to say some words. This totally amazed us all, because she had been diagnosed with a speech disorder just a few months earlier. There is SO much more to her story, and in time to come I will add more entries about the different aspects to her care. For now, I would like this to be an introductory of sorts. Simmi has become affectionate, which is another first for us. Speaking, singing and affection…what an awesome gift! She has taken a bash at singing and while she can’t pronounce the words correctly, she has the melody of certain songs down pat! To have her look us in the eyes and smile or come to us and want a hug or to give a kiss is so beautiful. I believe that many (if not all) of her medical problems are tied to the mold problem that we had in our previous home. We are hoping that her eyesight will improve also over the next few weeks.

While she still has problems with her walking, and sometimes using her hands, she is getting better at using her hands and manipulating objects. She has taken an interest in two new toys and is consistently playing with them and trying to discover what they do. Here are some pictures I took with my phone…they aren’t the best quality…but good enough! LOL

After clipping Simmi’s toe nails she became curious about the nail clipper, and I never thought she would sit and try to figure out how to use it! At first she fumbled with it, and then turned the top portion, and actually tried to mimic clipping her toe nails.

I started to cry when I saw her actually manipulate the nail clipper. I am so proud of the progress that she in now making.

We got her one of those push toys that pops the balls and makes noise and she walks around with it constantly now. She usually has to have something in both hands, but I am enjoying the fact that she has taken an interest in a new toy.

There are a lot of things that she still needs help with, but I am hoping that our time out here away from the mold will help her to catch up. In the meantime we are eating her up, and enjoying the love that she is beginning to express to other members of the family. I wonder how she feels inside?