Escape Artist at Daycare

Well, it appears the pack-n-play is almost outgrown over at Dawn, the daycare provider's house. Dawn put Julia down for a nap, as usual, around 1ish. She went up to check on her 30 minutes later and noticed that the light was on and then heard noises. She opened the door, and got a taste of what my house looks like all the time. The pack-n-play is in Dawn's teenage daughter's room. Julia got out and emptied every drawer within reach and spread everything everywhere. Her clothes, her makeup smeared into the carpet and all over herself, her hair products, every kleenex pulled out of the box and strewn about the whole room, the mascara - everywhere, her necklaces and earrings, everywhere. I feel like I am obligated to buy her daughter a gift card to replace the makeup and facial products, and Dawn a gift card for a steam cleaner for the carpet. Luckily she didn't smear the mascara on the walls as she has done here. I feel so bad for them and for Julia for not knowing any better. She was just having fun.....she did get in trouble, Dawn said.

Since I have been home she has opened a child proof container twice - once while I wasn't watching, I then replace the cap and gave it to her so I could SEE her do it, and, within 60 seconds it was open and poured out on the floor. Luckily it was just a folate supplement (for me - for anxiety and depression!).

Also, the school today called and said Julia was very crabby today, and Dawn confirmed that when she went to pick her up she was screaming uncontrollably and they let Dawn remove her from the class early as they could not console her. She was this way all weekend, too, so I have a Dr appt for her tomorrow just to make sure she doesn't have an ear infection or something similar, before I go out of town. Good luck and THANK YOU to those who will be watching her while I am gone.

Susan

To believe or NOT to believe...

I had a heartbreaking conversation with Julia's PT last week. After her session, I just looked at her PT and said....."So, What do you think?......." This person is someone that has been working with disabled kids for over 30 years and seems to know her stuff, or at least have life experiences.....She said cautiously, "well, most kids get most of what they are going to get back 6-12 months after injury." I said, "well, its been three years in January...". She, again cautiously, said, "yes it has been". She said that Julia's responses are different than most kids responses to PT. THat her muscles and responses are just "different" than most brain injured children that she has worked with. She asked if Julia has had a recent MRI. I said, no...not since sept 08 when she was again in PICU seizing uncontrolably.....she said she wanted to talk to the neurologist. As we were leaving the room, she said....this is the hard part.....that I may want to look into residential placement for Julia, as there is usually a 5-6 year wait list for placement. She said that Julia is cute and "manageable" now, but that when kids hit puberty, they often change and can become aggressive and violent. That it could affect my whole family...and that it would be wise to have a place for her lined up - and she stressed ' IF NEEDED. If five or six years comes and she is better or at least controlable, then no harm done - move her down the list another year or so....if she is CURED (what I want!!!) then again, no harm done. But to start considering her future now. What a difficult conversation. I was physically ill the rest of the day thinking about it. My mom, bless her heart, talked to several people she knows with similar situations who said that what this therapist said was not off base. Just to consider signing her up, and wait, and pray, and see. I don't want to believe it will be necessary, and I WILL NOT believe it will be necessary, but I have another child to consider - who just today was CRYING hysterically because Julia would not stop crying - do his feelings and his future well being matter too? Just a simple question to consider. This is about EVERYONE.

Thanks for listening...I will assume some negative responses to this post. I am just trying to think forward.

Susan

Encephalitis survivor - Lynn

Today, I had the joy of meeting a friend of a friend named Lynn who suffered from encephalitis (likely misquito transmitted) at 6 years of age. She is now in her late 50's and appears to be doing GREAT! She was in a coma at the age of six for six weeks, and when she came out of it, she was unable to walk and unable to talk. She said her recovery took years - though it seemed to me her speech came back in a quicker timeframe than Julia's.....but she wasn't exactly sure how long it took and is going to speak with her mother about those things.

Anyway, we had a nice discussion, and she gave me a dose of "hope" that I have been needing for quite some time. She said her doctors told her mom that she would never graduate from high school - and she did! She said school was difficult for her always, but she studied very hard and graduated - not only from high school, but from college, and even got her masters!

It was interesting to talk to someone who has been where Julia is. She said that Julia probably knows much more than we think she does and to try as hard as possible to treat her like a normal kid, and to talk to her just like I would have spoken to Jack when he was little - even though she is unable to verbally respond. She told me to NEVER give up hope on the communication thing - and gave me some ideas on communicating with her now.

Anyway, it was a very eye opening conversation we had, and I hope the relationship continues. What a nice lady.

Susan

Amazing Lecture last night about vaccination in animals...

So, last night I was asked by my new employer to attend a lecture on vaccines, as they are trying to make some changes to their protocol and wanted to hear what this person lecturing had to say. I was all for the change in protocol, but was not so excited about paying a sitter (actually two sitters - as Julia had hippo therapy last night) $80 to go to some lecture about how great vaccines are....I was hesitant, but felt obligated to go, and it was a GREAT dinner, so I went.

The speaker was Dr Ronald Schultz. As I was walking in, I ran into two classmates of mine from vet school that I had not seen in 10 years.....interesting......and one of them, Melissa, said I might really like this speaker, as he is very vaccine "cautious"....(after I briefly told her of Julia's situation). Anyway, my interest was peaked and I sat at the front table.

This guy was AWESOME! Recommended protocols for vaccines for animals that I have wanted for YEARS - even BEFORE Julia got sick, but even more so since she did. I have a hard time paying all this money I have to pay for my vaccine injured daughter, using a salary I obtain from VACCINATING animals for things they don't need. Don't get me wrong, I am not anti vaccine - I have seen parvo, and I have seen distemper, and they are awful and deadly diseases, but older dogs do not get these diseases and do NOT need to be vaccinated year after year after year. Doing this makes chronic immune mediated issues WORSE, and can even cause different types of cancer, etc.......I was enamoured with Dr Schultz.

I sent him an email today thanking him for his lecture and letting him know I would love to talk to him more about both animal vaccines and childrens. I gained SO much respect for him when, towards the beginning of the lecture, he said, something to the affect of " I will not stand up here and say that childhood vaccines are CAUSING autism, but I would be the LAST person up here saying there is NO correlation" FINALLY someone, a DR, an IMMUNOLOGIST, is admitting this. We spoke briefly after the meeting about julia and about what is going on with childhood vaccines and seemed to be on the same page.

THANK YOU DR SCHULTZ! I hope you can reach many many veterinarians and change peoples thinking. It HAS to start somewhere.

Susan

Good Ol' Roy

I am FREAKING out. Last night Shawn and I went on a date and went to the Douglas County fair with NO KIDS. It was fun. We rode some rides, ate A LOT of BAD food, and then were watching the little pony rides thinking about how much Julia would love that. There was a litte pony there named Roy, that nobody wanted to ride because he was so small, and not that cute, and looked really sad. Shawn fell in love with Roy. He said he looked like he and Julia were kinda "on the same page".

After the fair, we went to Sienna to have a drink before heading home - didn't want to get home too early and have to put the kids to bed - that's what I was paying the sitter for! Anyway, they had a painting on the wall that looked EXACTLY like little Roy. We got the name of the artist and Shawn emailed her today about the painting.

Tonight, me and the kids, and thank God, Anna (my asperger's babysitter), went to the fair. Roy was there - not walking in the circle, but tied to the fence. I took Julia over there to see him. She, of course, loved him. I walked over to the pony ride person and asked when Roy would be back out...she looked at me inquisitively, and then at Julia with her brace on and obviously not a normal kid, and she said she wasn't sure when he would be out. I asked who owned him and she said, "my sister" and pointed to a woman who was out walking with a kid in the pony ring. I, half jokingly, said I was interested in buying him. She yelled to her sister, "HEY, this person wants to talk to you about buying Roy". When the ride was over, the sister, Kurin, came over to talk to me. She said she wasn't sure he was for sale, as he was her son's "therapy horse". She told me her son was autistic - and now 10 years old - and that he had a deep attachment to that horse and it would be up to him when he would leave. I introduced her to Julia and told her about Julia's affliction and that Julia rides weekly and that I am a veterinarian, and that I understood her son's attachment and that I had expected no as an answer, even before I knew the whole story. Kurin looked at Julia and asked if she wanted to ride. We put Julia on Roy and Kurin took Julia on a 20 minute free ride around the WHOLE fairgrounds (while Anna, bless her heart, watched Jack). We talked about special needs kids, her son, treatments she has done, his progression, etc. Towards the end, she said that she actually was thinking it was time to get her son a bigger horse, as Roy is tiny and her son is big, but she was afraid about where he would end up. But she seemed to like Julia, and I think, me, and we had a mutual understanding of what it means to raise a special needs kid, and she said she would consider it, but would have to ask her son. She introduced her son to Julia.

Later in the evening, her son saw us and came over and said, "I think it would be OK for RoyBoy to go with Julia". I almost cried. I spoke with Kurin again, we exchanged numbers, and we are both going to think about it. I just need to find a reasonably priced place to keep this horse that is not much bigger than a Great Dane. He is only a five year old pony, but looks 18, and does not spook at all. She said she wanted to rename him EeeOrr (or however you spell it from Winnie the Pooh, because he is so mellow. Really good pony. ANYWAY - CRAZY!!!!! All because SHAWN, who isn't even a horse person at all, fell in love with the sad looking thing yesterday at the fair. I hope I can make this work.

THEN.............. a little later, I went down the big slide with Julia and when we got to the bottom, there was a woman there who saw Julia and came up to me and asked if she was autistic. I, of course, said, no.....she has a brain injury, blah blah blah....and she said, well, my son is autistic. He is 10 years old. He didn't learn to talk until he was FIVE and now talks. She owns a little shop here in castle rock called "Regina's" and asked me to keep in touch. Regina's is ACROSS THE STREET FROM SIENNA'S where Shawn and I had our drink and saw the picture of the horse that looks just like ROY!!!!!!!!!!!!!!!!!!! I AM FREAKING OUT! What a good night!!!!!!!!!!

THANK YOU GOD for your "little" displays of caring and helping lately!

Susan

Met with the "Life Coach" today.........it went well, I think. We talked for about an hour. Mostly the conversation went towards letting it all go to a higher power - God. Well, as several of you know, I have been wanting more spiritual enlightenment for a while. My problem has been, time, and finding the right church.....i don't like the traditional churches so much, but find the arm waving a little much for my style. Anyway, I agreed that it would be great to find peace in this, and he prayed with me and prayed for me to have the Lord more effectively in my life. I agree, but also disclosed my anger about what God let happen to my daughter. So, we will see. He is off to Germany for treatment of cancer (I didn't probe on what type, etc....), but he seemed sincere and wants to help however he can. He has two daughters my age, both with young children, and was very interested in the whole vaccine thing.....I, again, told him I am not anti-vaccine, but think people need to be educated. I hope the relationship continues. We will see. He seemed like a very compassionate man who was suprised at how open I was willing to be with my issues. I just want help. If he can - great. If he can't, well, I didn't lose anything either. I am not going to hide my issues from those who want to see my life go in a positive direction - which is what I want. I know NOBODY can FIX it, but any direction, if positive, is appreciated.

Susan

Interesting Day yesterday....

So, yesterday I called someone who had come into my clinic and given me his card and brochure - he is a "life coach" if you will, and works with people who are struggling with life's stresses, etc. He had come into the clinic on Friday and for whatever reason gave me his info. I asked him if I just looked overly stressed out or if he gave his info to everyone, and he said, "no, something just told me to give it to you". We are going to meet tomorrow to talk about some of my "crap" and see if he has any more positive ideas for me to improve my family's situation. He also told me he wanted to do this at no charge......I asked him why - what's the point in that for you, and he just said it wasn't all about the money. So we are meeting tomorrow (in a public place)....hey, you have to be careful these days! But I have a good feeling about him. Then, MINUTES after I got off the phone with him, I got a call from someone I had met at a neighbors house on Friday who is an EMT, but also a chiropracter, and he asked if he could come over last night and treat Julia - again, I said of course and offered payment - which he declined. He used some "activator" thing on her and said he would do it a couple times a week and just see if it helps. All these complete strangers coming out of the woodwork.....its kinda freaking me out! Little angels everywhere.

Susan