Our Grandbaby Simone

(Note: This entry is a repost from my blog The Alopecian Muse after editing the content to bring the article current)

Simone (we call her Simmi) is our first grand daughter and light of our lives. She is 21 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?

Tags: developmental delays, developmental milestones, Early Intervention, eczema, egg allergy, GERD, Infants and Toddler Program, latex sensitivity, milk allergy, multiple food allergies, neurological disorder, Peanut allergy, skin disorder, soy allergy, speech disorder, wheat allergy