Possibility part 2

Okay so last night it just got so late I was having trouble formulating coherent thoughts. I'm tired today, it's already been a long day and it's only 1pm, but hopefully I'll be able to think clearly.

So where does the whole possibility thing come in? Let me start at the beginning I guess.

Back in early September I noticed that the little swirly part of Ben's hair, that all little ones have, was looking thinned out to me. I wasn't something that worried me too much but I definitely noticed it. I took the pic that is in the title graphic of this blog on September 1st. I had been kind of noticing it before that date but wondering if it was just me and maybe he wasn't really losing hair and it was just this or that or my perception or something. I remember the day I took that picture was the day that I was absolutely sure that his hair was thinning. I still didn't panic or freak out or anything but it was something I made a note to keep track of.

Well, after this his hair loss became more and more prominent and noticeable. His hair was thinning all along the top and in the back by his sweet little hair swirly. Then Ed's parents in late September and it was getting worse and worse. My first assumption was that since Ben has a bit of a hair obsession (long story behind that, maybe I'll explain it another time) and he tends to twirl his hair around his finger that he was simply pulling his hair out from twirling it too much. I also figured that he had an appointment at the endocrinologist in a short time so we would just try to keep his fingers out of his hair and talk to the endo.

That's what we did and the endo assured us that Ben does not have any hormonal issues causing his hair to fall out. His testosterone is good (which Dad was really relieved to hear considering the one teste thing), his thyroid is good, his hormones are all good (with the exception of his IGF1 which we were aware of and has nothing to do with hair loss). So the Endo recommended we see a Dermatologist. Onward and upward! Made the appt. took Ben in, got told that Ben's hair loss around his swirly is definitely from pulling it out. However the hair loss from the top/front area is "Alopecia Areata" -- which is Dr. speak for "his hair is falling out and we don't know why." Dr. asked the usual questions, his hormones, his thyroid, his chromosomes... all normal we assured him. So he doesn't know.

Okay so now we're getting in the juicy part. Ben has been diagnosed with congenital Lyme Disease and was on meds for that from the time he was 6 mos. old until about 4 months ago (basically when money got SO tight we just had no choice but to stop temporarily). Having lost some hair myself due to Lyme the thought occurred to me that perhaps Ben's Lyme was flaring up again and that we needed to get him back on meds. So I called and told the Lyme Dr. that Ben's hair was falling out in chunks and he got us an appt. only days later.

We saw the Dr. and, as always, he was wonderful with Ben. He spent a long time with us and examined Ben and observed him, gave him verbal directions and interacted with him and Kitt too. He watched the kids play and announced that he was amazed at Ben's progress in the last many months. He said his muscle tone is better, his speech was improved, his social interacting was better... he just seemed like he was doing great. He was amazed to hear that Ben was off meds and said that he felt that if Ben was going to relapse he would have done so already. So we did some blood tests.... and there is the possibility... the almost to good to be true unbelievable possibility that maybe Ben will test negative for Lyme for the first time in his life. Maybe. Just maybe. It's out there. It's POSSIBLE.

So fingers crossed while we wait. Hoping and praying and wondering that maybe this is it for him and Lyme.

Possibility

So yeah, no update for a long long time. It's always crazy here. It's always chaotic here. Summers are more crazy and yet more laid back at the same time. There isn't the crazy rushing around, there isn't the evening mayhem of homework, and showers, and projects, and school functions, and insane bus schedules, and teacher meetings, and and and and and... The pace of summer is gentler, slower in pace, quieter in some ways. Having six kids around is NEVER quiet, but it has a quiet easy feel to it I guess.

This summer was a good one for Ben. He did a week of typical art camp... which weighed heavy on my heart to let him go but was an amazing experience for Ben. He learned to be more independent... he wasn't afraid of the dogs at the studio, he found his own way without me there helicoptering constantly. It was good... for the both of us. He also did his routine SN camp that the town does. He went 3 days a week this summer for the 6 weeks. He enjoyed it, as he always does. He had his PT, OT, and ST... also at a quieter and gentler pace. He came home with fun art projects and all covered in sweat and thrilled to be home. It's good to see him that way.

Ben took some big steps this summer. He just seems different to me. He started talking more. He started putting together longer sentences. It was almost comical really. This summer Kitt also started talking more and kicked it up a notch by starting to talk in 3 word sentences. Ben saw this, as he himself mostly spoke in three word sentences, and said not just no... but HELL no and started to speak in 5 word sentences with regularity and every now and then 6 or 7 word sentences. It wasn't only that he was using longer sentences though... it was that somehow he was finding ways of using new words and better ways of expressing himself to better communicate his needs, wants, and emotions. He also showed a greater understanding of concepts he previously hadn't. Ben has ALWAYS been an extremely loving and affectionate child, always. This summer Ben started saying to me "Mami, I love you EVER!" (Mami, I love you forever). The first time I heard him say it I had butterflies in my stomach and my head was spinning. He loves me FOREVER. Is there anything better than that? Really... anything in the world better than THAT? I think not.

Over all Ben is just changing a lot lately. He "feels" older to me. I get it that he's delayed, you don't have to tell me because while I love my children more than I can possibly express I work VERY hard to not be completely blind to who they are. I get it, he's delayed... he's not like other 4 year-old boys. I know that. I watched him this summer as Kitt caught up to him and then started passing him. I watched with both awe in Kitt and how amazing she is and pain for Ben and watching him fall behind. Still he's different. There's something about him. He's playing games with us now. This summer he cracked me up when we went to the hospital for more testing and as we waited in the waiting area and told Ben very pointedly that he was to stay in the area where the carpet was he hopped off the carpet and hid behind the partial wall laughing as he shouted to Ed and I "Haha!! Missed me!!" THAT is new... that is a blossoming of who Ben is. That is a maturation into a boy that knows that he's playing a game with us, he knows it's funny, and he's relishing in his own freedom knowing that he is MORE than just an extension of one of us. That is cognitive development... and it's a beautiful thing.

Oh and in fun news while Ben started out the year absolutely terrified of "the big pool" and only a little iffy on the baby pool he ended the summer begging me on days to take him into the big pool so he could play. He's such a little mystery that boy. Most of the summer had gone by and still Ben wouldn't go into the pool so I admit that one day I just scooped him up and brought him in with me despite his protestations and wails. Within a minute he stopped crying, within 3 minutes he was laughing and within 5 minutes he was playing so vigorously it became a challenge for me to hold him tight enough that he wouldn't slip out of my arms! That was it, he was sold... for the most part... because you know he IS Ben. After that he would beg me to swim and when I would get him ready to go into the pool he would suddenly be afraid again and tell me "NO POOL!!" right up until the moment we were actually in the pool. Such a nut that little guy :)

Fall came and the new school year. Same classroom, same teachers and aids, same kids, only difference being now he goes to PM class instead of AM class. I was very worried how he would handle it since he was still napping every day in the summer but he's actually handling it just fine. Well, okay he's tired in the afternoons and often naps on the bus ride home, but he's handling it better than I had anticipated. Good news! He is comfortable and happy at school and I'm so glad at our choice to leave him where he was instead of moving him :) His PT says that he is making AMAZING progress this year so far so more good news. I have to get in touch with his OT and ST to see what they have to say.

Okay it's late. I must sleep. I WILL update some time this week about our very big appointment with Ben's Lyme doctor from Saturday. Just can't do it tonight. As is so often the case here, so much to do and so little time!