Crayons, Playdoh & Wax

Ok, I decided that I will post all my medical stuff back over at Better Me… even if it is about the dd. I just put a bunch of links up over there. I am doing much better… as I am finding this all almost a relief instead of a tragedy, especially since I have realized that I think my mom and I have finally found the diagnosis that we knew was out there. We have said for a number of years now that one day, we would find something that would tie all of our problems into 1 nice little package… and I think we found it. It is something our whole family has lived with (they just never knew what it was back then) and they all lived to long happy lives. Ken is arguing with me about this and just says lets wait and see what they say. I understand all of that, I truly do, but at the same time, when it is right there in front of your face in black and white, it is sometimes hard to see blue!

I was just thinking about the title of my blog… and the actual WHOLE thing. It is just so true right now.

I use Crayonsetc all the time… and if you google it, I will be the whole 1st page at least… or it is someone’s link TO me!! If you google my name… Yah, I have gone as far in as 15-20 pages in and haven’t found me, and that is even when putting Colorado with it. (have you ever googled your name? It is kind of fun… sometimes I will google friends just to see if I can find them, especially people I have lost contact with.) Now if you google just crayons… I show up in the first 2 pages, Playdoh the first 5 and it has been awhile so I don’t remember exactly, but even with wax, I know it was in the top 10. (I am thinking I have a really common name… not like you would think that leslie is that common, and we won’t start on the last name… but no, it is not Smith!) 

So I was talking to some people and actually explained the Crayonsetc the other day… btw, I didn’t realize how many people didn’t realize that it is Crayons Etc… When I was looking at my domain name, Ken informed me that Crayons, Playdoh & Wax was too long for a domain (and it was available, surprise?), so that is when I decided to go with Crayons Etc. The other thing is that people just kind of look at me quizzically when I tell them that it is short for Crayons, Playdoh & Wax… to then, when I share the tag line, they get it. I have no idea, well actually I do. When I first started blogging… I wanted something cute that described me, but was different. At the time I was selling candles, thus the wax… and K was little, so my life was all about the Crayons  & Playdoh. So that is when I did come up with the tag line to go with it… and to this day it is still appropriate, thus the reason I have not changed it… (just locations ;)) 

Crayons, Playdoh & Wax… My life being Colored, Shaped and Molded. There you go, cuz I know you were always wondering. 

but I am not! God is truly amazing!!!

I got an email from one of my friends today on one of my email lists. Terry was saying how she and 2 of her children were diagnosed with Ehlers-Danlos in October. First of all, I had never heard of it before, let alone met someone who had it, and 2nd, I have had to explain it to all but 1 of the doctors/therapists we have seen for K (except of course her Ortho doc who diagnosed it), then for me to not only find out that someone on one of my email lists has it, but to have it be someone I have actually met IRL, is just amazing. She called me this afternoon and I swear we were talking for like 2 hours. The more we talk, the more we have in common. Now it makes me wonder more and more about it (yes, to the point where I am thinking that I am the one who gave it to K). But the good part is, that I have relaxed and realized that K can and most likely will grow up and have a normal life.

This is where Terry and I started talking and we have so many things in common… Fibromyalgia, thyroid, PCOS, narcolepsy (ok, it is actually idopathic Hypersomnia, but how many people actually have a clue what that is? I have to explain narcolepsy and a lot of people know what that is!). Anyway, it has made me realize that maybe it is me. she told me when she went back to her doctor after her diagnosis, that the doctor actually stopped writing and looked up and said that it so explains so many things.

The interesting facts I am figuring out. Ehlers-Danlos is one of those inherited disorders that only 1 parent has to have the gene to pass on. They also call it hypermobility, which is where I come in. On the list of conditions that people with hypermobility have. GERD - Me, IBS - Me, Planter fasciitis - Me, bursitis - Me, anxiety or depression - Me, Knee pain - Me (and K), back pain- Me, hernia - me (granted mine is hiatal, but still), prolapsed discs -Me, Bruising easily - Me, Joints that make clicking noises - Me, Headaches - Me, TMJ - Me (and not K), Increased nerve compression - Me. (ie: carpal tunnel). Oh, and I won’t even start on my scaring issues. I scar so bad. The reason I won’t even consider lasix surgery because I am worried about scaring on my eye causing me to lose it!!Anyway, the more I am reading, the more I am seeing the family stuff here… and the more I realize we need to keep an eye on the nieces and nephews on my side of the family. At least get them an echo, just to make sure… especially since my sister has the heart issues!! (and pretty much whatever I have, so does my mom!)

Ken has actually threatened to take away the computer today because I just keep going from website to website… So I am going to save this and be done. I need to go vegg anyway… my temp is 99.6, which I know for most people is nothing, but I don’t run temps… when I had meningitis I only ran 101 at most… and that is one you run high temps. Thank for the continued prayers!!! Keep them coming, although I am much more calm today!! (just sick) My right cheek feels like I have been punched… it hurts so bad. I see the new Dr on Tuesday, so I am going to continue taking my OTC meds and try and make it til then… and in the mean time… of to start the laundry!

This morning we had our parent conference for all of K’s evals. Well, I think that they thought everything would be ok, because they covered the basics. Problem is, Mom is medical and Mom knows a lot more than the normal person. Since K was 18 months, she has had PT, because she has HypOtonia (not to be mistaken with hypERtonia)… she is TOO flexible. Well the parts we are finding out is that she has ligament Laxity… which means that she has so much give in her ligaments that they basically have trouble holding things together. 

Every since they were talking to us this morning I keep picturing those toys that are made with ropes, when you push the button they completely collapse… Basically that is what they are telling us. Between the lack of ligament support and the fact that she has lack of tone in her muscles, she is lucky she is walking. Her knees are bowing, her elbows are bowing, and she doesn’t have enough movement in her hips because basically that is the only stable point in her body, but she doesn’t have the proper movement in her hips, causing her to walk weird.

Her range of motion is below normal in all her joints. Well, when you start reading about the 2 different problems that we know she has, it is expected to start having joint problems, thus the reason her knee has been bothering her since she jammed it last summer at a Sky Sox game (it was the last game of the season). She however didn’t start complaining to me about it again until January, thus starting all of this process.

The part I did hear is that it is only going to get worse as she gets older. It can effect her back (which explains the times she has complained about her back hurting and I blew it off thinking she was using a ‘Mom excuse’ to get out of doing a chore.

The light at the end of this was Speech Therapy. Yes, she has some processing stuff, but that goes with Asperger’s. She can repeat back a sentence, she can make up sentences and stories when you give her a few words. Where she has problems is when she is given like a 3 step command where the 3 things are not related… example, Get out your math book, open to page 85 and do problems 1-10. Yes, they might all be about Math, but the steps are not related, and thus she probable will lose something in the process, which we already knew. Basically, she is NOT in the 1st percentile for Auditory Processing Disorder… more like 85th percentile. They did recommend ST, but then we can probably get the school to help out with this.

The biggest thing is, we didn’t get to the OT eval (we ran out of time) and so we will be going back for that next week. I did have her look though and basically, the reason we have trouble with her handwriting is she doesn’t have the muscle tone to hold her arm to where she can write. Her fine motor skills came back below age level… at about a 6 year old. thus the reason they have recommended OT, but again, we will be talking more in detail next week.

I held it together well until we got into the car and I started melting down when I talked to my Mom. I am so frustrated because of the fact she was in therapy at 18 months for the Hypotonia… and basically, they should have NEVER discharged her back then. It isn’t like I have not had her into the doctor over all these years. Why are we just now finding all of this out at the age of 10? Why did the OT that we saw last year not see any of this? Yah, these are the questions that Mom is asking herself and beating herself up about now.

I need to go to the store… shopping is therapy for me. The interesting part is, just last night I had sent out applications looking for a Respiratory Therapy job so we could get a 2nd car… and more and more it looks like I need the job so we can get a second insurance to help cover co-pays and cover more therapy!!! (since we only get 20 visits TOTAL for all 3 therapies together. Yes, that will be another call I make today to try and see if we can get more with medical necessity. 20 per therapy would be much better!!!) Other problem is though, if I get a full time job, then I am not home to take her to all these therapies!!

Just keep us in your prayers, please. I know God has a plan, now to just figure out what it is.

I have planned to write so many times this week and it just never happened. Life has been nuts. I got calls from the school twice this week… and it was to the point that my dh, the person who has his first degree in education, who has been adamant every time I talk about my friends who home school, that we would never do that… he said to me… do you think you could be organized enough to home school her? I almost fell over. I actually did go to the school and talked to the principle about moving her class… it has gotten that crazy. There are a few things with an Asperger’ child that you have to learn when trying to teach them. For one, I have learned that with K, even if you are not standing over the top of her, you CAN NOT have her in a different room when she is doing home work. With that being said, you don’t send her into the hallway when you expect her to get work done… or leave her in the class room when you are outside on duty, because 1. she is 10… and 2, she has ADD, and WILL get off task. Monday she started playing a game on the computer instead of doing her work. Gee, big shock… even for a kid without Asperger’s! And then on Wednesday, I get called that she is at the principle for calling kids names. Ok, I get there and expect butthead or stupid or something like that. No, she got sent to the principle… are you ready for this one… because she was calling every child that walked past her in the hallway MEGAN. HELLO??? Yes, that is right. And if he had taken 2 seconds to talk to her… the reason she was doing it is because a couple of the kids were talking about what it would be like if everyone had the name Bob… and one of those kids started calling everyone BOB… so she decided to start calling everyone Megan. I am sorry, that might be annoying, but that is NOT a reason to send a child to the principle.

And I spent the rest of the week trying to finish up cookie paperwork… with the majority of the troop profits still sitting in my garage. Anyone need cookies??? I REALLY need to get rid of them… not to mention the ones I had to pay for because I can’t get them delivered!! 

I need to go to bed. Night!! Oh, and guess what… my  CT came back saying I have a sinus infection. GEE, REALLY??? Isn’t that what I told the doctor when I went in there??? Might it have something to do with the fact that they cultured my nose and it came up MRSA, yet they didn’t treat it, even though I STILL had a sinus infection. When she asked me how long I have had it, I told her… since JANUARY 20!!! (I don’t think she believed me!!)