At Home in the High Desert

We have been in New Mexico for a little more than a month now, and our family is adjusting very well. We found a permanent home in a town called Rio Rancho, and well…I must say that I am pleasantly surprised that I am enjoying the flat desert. I guess when viewing the landscape from far away, everything looks flat until you begin to drive through the terrain. There are many hills and lots of vegetation here. There is beauty here just as there is beauty in seeing the mountains.

I have not had access to the internet for a while now, and I was starting to go nuts! This past Friday the cable guy came and hooked us up. We are now in a small four bedroom house that is in need of a lot of tender loving care. We made the decision to rent this house because the landlord was willing to allow us to do the work necessary to make it safe for Simmi. She is highly sensitive to latex rubber and is allergic to dust mites, so carpet poses a big problem for her skin. The first order of business was to rip all the carpet up, then to clean up the place and paint. It has been a slow process but we are getting a lot done. My kids have been a such a big help and I don’t know if I could have done as much as I have done to this point with out them. They have watched over Simmi as I ran around like a chicken without a head trying to get things done.

It hasn’t been easy for them. They have lost everything they held dear and moved very far away from their dad and friends. When we first got to NM they had a week left of school before the holiday break, but because their school didn’t send their transcripts, we couldn’t register them. It worked out well though, because if we would have been able register them in the school near the temporary house, we would have had to pull them out of there and transfer them to the Rio Rancho school district. We found our new home the end of December but with the landlord going to see relatives in another state, we couldn’t sign the lease for another week. THEN when we signed the lease we had electricity but no water or gas. It’s very hard to work in a house that has no heat or water. We moved in on January 14th with no furniture. I was partially holding my breath half the time wondering if we were going to have to sleep on the concrete. But, as it turns out, I found another very endearing quality about NM…the people here are very generous. People donated beds, a living room set and a table and chairs! All of it in very good condition. Our first night in the house we slept on beds and NOT on concrete. Noah started school this past Thursday and Shoshie started school on Friday. It was an easy adjustment for Noah, but Shoshie found the size of her school a little overwhelming. Simmi is doing wonderful and I am happy to say that she is now eczema free. The lack of carpets cleared up the last of her rashy skin. Unfortunately, because the house is still not finished, the only room that is safe for her to be in right now is the kitchen. I call it “the safe zone.” She definitely doesn’t like being confined to the small kitchen, but it is the only way to keep her clean until the rest of the house is done. Tomorrow I will be finishing the painting and then she will be free to roam our little abode freely.

I am getting stronger every day, and it is so wonderful to feel normal again. In one months time all the pain that had been constant for the last year has left me. I wouldn’t be able to do all that I am doing right now if I was still racked with pain. I am bursting with energy and greet each new day like a child on Christmas morn. In the next few weeks I’ll post pictures of our new home with before and after photos.

Thanks for reading!

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?