Happy Father’s Day Poppie

It has been well over a month since I last updated Simone’s blog site. You’ll have to forgive my absence, there has been a lot going on in our lives and both blog sites have taken a back seat for a while. I’m writing this entry as a Happy Father’s Day to Dom (Poppie), but it is also an update on Simone.

We celebrated Simmi’s 2nd birthday on June 10th. I took out this cute little crown and earrings for her to wear and amazingly, she let me put them on her. She walked around the house carefully so as not to have her crown fall off and lightly shook her head back and forth so she could feel the earrings as they dangled down, gently brushing against her sweet little neck. This child loves jewelry. We have dress up beads that she must put on everyday and she walks around like a pretty princess.

We didn’t make her a cake because she doesn’t like sweet things to eat unless they are berries or some kind of fruit. Her day was just filled with coloring using her favorite pen and notebook, watching Sesame Street and playing ball. Those are her activities. I bought her a few night gowns that are 3/4 long and she just lights up when I take them out for her to wear. She’s starting to get good at removing her clothing, so we had to come up with some interesting ways to keep her clothes on. The night gowns help, but if she didn’t have the night gown on, she would look really ridiculous. Basically I need to keep a onesie next to her skin, followed by feetsie jamas, then another onesie on top of that and finally the night gown. It’s quite the get-up. I have gone into her room one too many times and found this child butt naked. We need to keep her skin covered because she scratches it raw if we don’t. We believe this is a sensory issue she has.

Simmi, over the last few weeks has been having some trouble with her walking. She has always had some issues with how she walks, but it got progressively worse right before her birthday. On June 9th, we were in my room and I was half dressed (getting ready to go out) when she walked over near the window seat and her legs just gave out. She was so close to the window seat, that as she dropped, she hit her chin on the edge. She didn’t cry at first, and I had no idea that she had hit her chin. With no shirt on, I hurried over to her where I saw some blood on her neck. I thought maybe she just scratched it as she went down, but NO…as I went to wipe off the blood with my finger, my finger went straight into the big gash in her chin. Now she is gushing blood and its dripping everywhere. I put her down for a moment to put a shirt on, put pressure on the cut until it stopped bleeding and I rushed her to Urgent Care. This was not a simple cut, this was a deep enough for my finger to feel the bone of her chin! While in Urgent Care, this stupid nurse looks at me patronizing and says “Oh, its just a little cut, don’t worry about it.” Little cut my ass! The doctor came in to evaluate it and said she definitely would need stitches. She screamed through almost the whole thing but as soon as we said “Almost done” she calmed down, relaxed and stayed very still. At one point while she was being stitched, the nurse who was holding her chin and head still said to me “This is one tough little girl!” and Simmi stopped her screaming for about 30 seconds to tell the nurse her own opinion…in her own language. The nurse started to laugh and said “What did she just say to me?” Dom and I cracked up laughing and said we don’t know what she said, but obviously she wanted to give her two cents about being tough. We took her home and she slept the whole night, exhausted from the day’s events. When she woke up on her birthday she seemed happy and content, singing in her crib and jumping on her mattress. We went in to get her a bottle, and noticed that she pulled the band aid off and actually picked out one or two of her stitches. She had eight stitches put in. As the days went by however, she would pull more of the stitches out. Three days after having the stitches put in, only two stitches remained, and she would play with string that dangled from her chin. It looked like she had one lone green hair hanging down from her chin. The picture on the left shows her handy work of removing the stitches. You can see the little green string hanging down. She didn’t seem to mind it, although in the middle of night after half the stitches were out, the wound opened up and the flesh inside started to protrude a little. At this point there was nothing we could do about it. By morning, it had scabbed over.

She can run and jump ok, but when she is walking, her knees start to buckle and she starts to walk with both knees slightly bent until they just give out. After that happens she usually starts to crawl on her hands and knees to get to where she’s going. It’s alarming to watch this happen to her. She doesn’t seem to mind and when she falls, she doesn’t cry or complain about it. Her legs and knees are bruised up from falling so much. On the day we were supposed to take her to get the rest of the stitches out (right before we were going to leave) she was walking down the hall when her legs gave out right by the bathroom. She collapsed and hit her head on the side molding of the bathroom door. Now she has a huge bruised egg on her forehead. Great right? We took her back to Urgent Care to have the stitches removed and we told the nurse about Simmi falling just before we left. The nurse looked at me and says “Why does she keep falling?” Of course I knew she was fishing around like I was abusing Simone in some way. We explained what has been going on and also let her know that her therapist that comes to the house each week has witnessed her walking problems. I guess that was enough for her, but she still looked at me suspiciously.

Simmi’s speech has not improved very much. At least not as much as I would like to see. She understands what we say and can follow simple commands, but she is not saying any new words. She has also started some repetitive speech where she says the same thing over and over again like a broken record. She’ll keep saying “MA!” and when I respond to her, she just says “MA!” again. This continues through out the day. One positive thing that has happened over this month is that she has said “BaBa” three times meaningfully. She doesn’t do it all the time, but it is the first time she asked for something that she wanted verbally and meant it. She still won’t tell me when she wants to eat, but she is eating better. We stopped giving her Neocate and switched over to Rice Milk which seems to be helping with her appetite. These are the foods she is now eating:

• pears
• black berries
• blueberries
• mango
• dehydrated cranberries, blueberries and raisins
• asparagus
• broccoli
• carrots
• cauliflower
• chicken
• white potatoes
• sweet potatoes
• carrots
• rice bread
• rice pasta
• quinoa pasta
• gluten, egg and milk free Snickerdoodles
• rice chex
• Teddy Puffs (allergen free)
• corn
• beets
• watermelon

What we discovered is that she eats better if it is only a meal of one thing. We can’t put potatoes, corn, carrots and chicken together. Each thing must be eaten separately. We rotate the foods she gets through out the day. The combinations of different foods upset her. This may also be a sensory issue for her. It hasn’t been easy on the therapists that come to work with her each week either. She does better in the morning, but her attention span doesn’t last for more than a second or two. There were only two exceptions to this where she was actually engaged in a building activity for about thirty minutes. While she has difficulty focusing on one thing, we have found that she has a love for tools. Screw drivers, screws, hammers, and pieces of wood. I gave her a screw driver and some old hardware we took down off the window that had a screw in it…she took the screw driver and was able to accurately put it into the screw and turn. Her learning will be unconventional, that’s for damn sure. We have spent May and June trying to figure out how best to teach her. This is what has taken up the bulk of our time. We are working on plans to build some multi-sensory stations in the house and we have also had to remove a LOT of things around the house. She seems to focus better when very few things are around the house. Stray papers, all her toys, and anything else that can distract her needed to be removed. We only take out one particular toy at a time or work on one activity. The therapists have had to do the same thing as well.

This has been a very long entry, but I wanted to conclude it with a message to my husband from Simone…

Dear Poppie,

Even though I can’t speak, I know that Grama will be able to articulate what I want to say to you. I love you Poppie with all that is in me. I love how you are always there for me, giving me a smile and singing to me. You can be so silly sometimes and you always make me laugh. My life is so much better with you here, because Grama can be such a pain in my hiney. She means well, but you are so much more fun! I love peeking out from behind the couch and seeing you come after me. I love calling you “dee-dee” and watch you come to my room all excited to see me. I love when you make me a bottle and kiss me and say “nigh-nigh.” I love when you put your swimming shorts on and climb into the tub with me for a bath. I love when you take me into our pool and how you hold on to me and never let go. You make me feel special Poppie. I love sitting in my chair when we are eating and entertaining you with my crazy faces and sounds. I love when you laugh at how cute I can be. Thank you for thinking of all the new ways to help me. I know you will build me some great learning tools. I love going on walks with you and how you never seem to tire of my whining when I’m overtired. Thank you for loving me sooooo much!

I love you Poppie,

Love Simmi

Tags: Father's Day