Happy Halloween!

Will spare the novel tonight...just pictures :)

Let the Trick or Treating begin!

The second house

Silly Obie Wan

Not so silly Buzz Lightyear

Mr. Snuggly Bear...I think he found a new love!

Checking out their loot!

Yummy Goodness!

And proof that Zachary CAN make a happy face...this is from Walden Farm this past weekend...poor kid is unbelieveably moody lately.

Hallow-eve

Well everything is slowly slowing down here. I am just about done getting caught back up with school, and just overall getting back on track. It's amazing how taking a week off suddenly throws everything out of whack! Robert took off Wednesday and Thursday so he has been home all this week, he has some training to do from home with a customer but other than that not much going on here. Like I said still working on getting our heads back straight. THe boys are very excited about trick or treating tomorrow, I wish I had worked on getting Gavin to say "trick or treat" but I really didn't even think about it til today. Oh well! I am sure he will catch on tomorrow, he's starting to talk SO much lately it's nuts! We pulled up to the school today to get Jakeb and the second we stopped the car he knew where we were and started saying Jagey, Jagey (aka Jakey) it was too cute...he then also started saying "Ho, Ho.." (aka Hope) he did that last time and I realized today that he is talking about Alex and must have figured out that with Hope comes Alex, thought that was cute and pretty smart! He started saying "Mommy" a few weeks ago and it is VERY cute and also VERY annoying! Anytime he wants anything he whines Mommmyyy, Mommmyyy in this whiney little get on your last nerve voice over and over again. I am trying to get him to actually say what he is wanting rather than pointing and yelling Mommy cause man it drives me nuts. If I stand my ground or have someone else show him what I mean he usually gets it and it least makes and attempt and that works for me, tonight at dinner he started it with bread and I told him to say "bread please" and he actually did say "beh pease" so he's getting it. It's too cute and I love it! Oh! THat's another one he's saying regularly now, "lu you" now that I definetly love!!
So yeah I got to eat crow today...I have ranted many times about how I never understood how parents could actually FORGET to pick their kid up from some place, I mean seriously it's your kid! Yep, happened to me...well kinda I actually didn't forget Jakeb but I did forget they had a half day. Luckily I had called Hope to ask her a question and she asked me about Jakeb (Alex wasn't at school today) and I seriously freaked and panicked grabbed Gavin and ran out the door. I got there right on time, he was one of the last kids picked up but at least he wasn't standing there crying thinking I was never coming which is what would have happened had I not called Hope. Yikes! Mr. Jakey is doing very well in school, last week doing his homework he actually read one of the sentences to me and we both were very excited! He's doing well recognizing his site words and is getting more curious about learning in general which is good especially because he's been so play play play all the time and never had much interest in structured learning. But he's doing very well at school. Even dancing and singing! He really is such a neat kid, I mean obviously I am partial and he does have his faults but he just is great. It's cool watching how his mind processes things and how he works. He and Zachary and Gavin are so different it's interesting watching them interact as well as how they do things individually.
Zachary had his first day back to school today and he did very well. AND super cool thing with his school, with him missing just about the entire month of October I hadn't actually had a chance to bring the payment for October up there and I knew they would be understanding so I hadn't made a trip up to drop it off, so I brought a check today for Oct and Nov. I actually stopped and talked to them and said thank you for being understanding and she said oh, actually we are just going to let you skip for October! How awesome is that!? So now we are payed up thru the rest of the year, woo! I thought that was so nice of them, because technically they don't have to do that and I would pay whether he is there or not. So yay! ANyway Zachary is doing MUCH better. I took them to the playground today and in a place like that it's easier for me to see the areas he is still needing to "work" on or having troubles and really it just seems to be overall strength. He normally could climb up and down everything with no trouble but he just couldn't seem to have the strength he needed to pull himself up. He has OT again next Monday (I goofed on the appt I made last week and made it for Tuesdays..der-he has school!) so I am curious what they say, because I really don't know that he needs therapy but more just time to regain his strength.
Something that has been bugging me lately a bit has been my decision to take him to the ER, I was so unsure on whether to take him and finally just took him because I wanted to just make sure everything was ok so I could calm my nerves. But gosh what if I had NOT taken him, I almost didn't....he could be WAY worse, like completely paralyzed worse and could not recover...that's just so scary! After reading more on TM I see how absolutely horrible it is, and how bad he COULD have been and am so incredibly thankful that he wasn't. I don't understand how a disease so life altering isn't talked about more often, because before they diagnosed him I had never even heard of it. As it sits right now we are in the watch and wait category and will be for quite some time. He is doing ok on the "'roids" most definetly is quite moody but it seems to be leveling out a bit, we'll see how he does when we lower the dose next week.
Only about 5 more weeks of school left! Holy cow! YAY!

ALrighty I am off to grab a movie and some last minute halloween stuff :)

Seems better

Zachary has seemed MUCH better today. He has been almost his normal playful self, which is nice to see again. I talked to the neurologist this afternoon. She was very nice and made me feel better to actually TALK to her. When I called them this morning the receptionist tried to tell me that because he's not been to the office before that he was a new patient and that my pediatrician needed to call and make an appt. I had to explain to her more than once that he has been seen by neurology already at the hospital even then she was like well I am sorry, finally I had to get snippy with her and tell her he was the hospital for the whole week, they have seen him he's not a new patient. I mean seriously. Then she took a message for the doctor and said it may be a nurse to call me back and it could take 24hrs. UGh fine just as long as someone calls! Anyway the doctor called and was very helpful and gave me her email address which she says she checks all day long and that way I can be more in direct contact with her. She said the walking/leg issue could be from the prednisolone being dropped down so much or it could be the disease progressing. I feel it was more because of the steroid being reduced...which either way is concerning I guess. But he was much better today and I let her know how he was doing and she just said to keep her updated and that he may need to be seen at the office again. She also said they will be working on getting another MRI scheduled sometime in the near future to see how everything is looking. So it was good to actually talk to them again and to know I will be able to be in contact a little easier.

Ok well I wanted to update on the other two but Zachary threw the WORST fit he has ever had tonight before bed, I think the steroids are effecting him emotionally quite a bit but not sure if it was that or he was overtired or what. But either way he finally fell asleep and is now whimpering and crying again about the SAME stuff he was crying about before. So before he wakes up the whole house and has everyone freaked out and crying I need to get off here and deal with him. Thanks again for all the thoughts and well wishes for him and us :)

It's just scary...

So Zachary is home and has been doing ok, he's having some issues with things and we expected to see more things appear after we got home but so far it's been fairly mild and mostly things he was having a hard time with before (getting himself sitting from laying down, climbing up on things etc..) Today however he has been limping around and as the day wore on he seemed to be progressively worse. After he got up from his nap though he couldn't walk at all, said it hurt and started to cry when I tried to stretch his legs out. I tried to call the neurologist number we were given but they told me there that the oncall doctors do not call patients back and if we have an emergency to take him back to the ER...which is exactly what I don't want to do and don't know if I should do hence me calling, :Ponder! So they suggested calling our Ped, which I was going to do...anyway. Called on call doctor she said that she would talk to the other doctors and called me back and recommended taking him back to the ER at Vandy. We had tickets to the Shriner's Circus for tonight and have been talking about him going all weekend (ok'd by the doctor before we got out) so I decided that before I take him BACK up there that we would go there because he was so excited about it and after the week he's had and before he gets poked and prodded again. Plus he was in a fine mood he just couldn't walk, but other than that he was happy and playful. Well he had his steroid meds at 3:30 and I gave him motrin in the car around 4:45 and by the time we got to the circus he was able to stand on his legs and hobble around a little. So we get home and he's in a great mood and is walking around about how he was earlier today. We decided to wait and see how he is in the morning and I called the oncall dr to let her know and she recommended still taking him because maybe his dosage needs to be upped or something with the steroids, we debated and debated and have decided that IF I bring him now it would be 11pm before we got there and probably 3-4in the morning before we got home. We tried calling the nurses at Vandy and they couldn't give us any info, it's so frustrating. While we were at the hospital they told us SEVERAL times that he may get worse before he gets better so we don't know if this is just that or something he should be seen for..and part of me wants to just take him in and the other part says to just wait and see. I REALLY hate for him to have to go thru so much again. We have decided to just wait and wake him up in a few hours to see how he is and give him some more motrin. I will call neurology first thing in the morning, this is just so scary and I am worrrying so much I feel sick. Even taking him in will not make me feel better because other than giving him more steroids there is not a thing they can do to make it stop....what if his immune system is STILL attacking his spinal cord, there is nothing they can do to stop it. It just sucks all of it.:\
Please pray that this stops and he doesn't continue to get worse and that the leg problems earlier today were just a fluke.

Well, what a week...

I guess I never made it back for continuing with my last blog...our week got all switched around.
Robert left Sunday morning for Canada, I took Zachary to the doctor again on Sunday morning because on Saturday we noticed that he was walking with his head tilted to his side/shoulder and still was saying his head hurt but not as bad. He had perked up mood wise here and there so I was having a hard time deciding what to do. One minute he would be acting bad and the next he would be ok. On Sunday my mom and the kids drove to Benton County TN because I have a paper due for my geography class and it requires some specific field work there. I figured since we would be in the car mostly that Zachary would be ok, PLUS overall he acted like he felt better so I honestly thought we were on the upswing but still having some odd "side effects". The final breaking point was after we stopped to eat lunch at McDonald's (I know seriously how bad is that but really he wasn't acting THAT sick, plus I am really glad we did or I may not have taken him in). So at McDonald's he was unable to climb up in to the play area. It was awful watching him, it was just heartbreaking because he would get one leg on the platform and half his body but was just almost "frozen" laying flat across the platform half way up and could not get up, couldn't even lift his head up off it. I was almost in tears watching him we didn't stay long and back in the car he was acting like his normal self but when we got out again he wasn't as perky. After some discussion I decided that I was tired of worrying and was just going to take him to Vanderbilt ER to ease my mind. I honestly thought they would do a few tests and send us on our way. We got there around 8:15 Sunday evening, just Zachary and I, my mom was with Jakeb and Zachary. They got us checked in and into a room relatively quickly probably by 9pm. The first doctor we saw suggested it being tortecollis and gave him a dose of Motrin and I think was leaning towards sending him home, I told him I didn't drive all the way up here for that and that I don't want to be overreacting but I also don't want to underreact. They had a hard time seeing exactly what I was talking about, it took a little more observation to see. Another doctor came in and checked him over and said they would be doing a CT scan and pottentially a MRI. He did great in the CT scan, and it came back clear which I expected but CT's don't always show everything so they ordered an MRI. Talk about nerve wracking! He had to be sedated for the MRI and from when they took him back to when they brought him back was 2 1/2 hours, there are several side effects they warned me about with the paricular sedation they used so I was going nuts! We sat in the ER ALL night long. The MRI showed inflammation of his spinal cord which was causing the head/neck pain and the tilting of his head. They ordered a spinal tap, gave him a sedative and a numbing cream and he did great with it, didn't even flinch! The spinal fluid was sent off for all sorts of tests, bacterial and viral and a few others. The tests all have come back clear which is great news! He's been here since Sunday night and is supposed to go home tomorrow. There have been lots of doctors in and out. The neurologists we have seen have diagnosed him with Acute Idiopathic Transverse Myelitis, which is essentially inflammation of the spinal cord from unknown reasons. It was most likely caused by a virus/cold that he had last week and for some reason his immune system in a sense turned on his body and began attacking his spinal cord. I have more questions for the neurologists about it and hopefully will understand a little more after talking to them. We have seen infectious disease doctors and physical therapists and occupational therapists, it's been busy. He's doing MUCH better, poor kid has been thru a lot. They started 2 IV's in ER and stuck him 3 times (1 mess up and 2IV's) They switched to one IV because they other was hurting him, well Tuesday he FINALLY wanted to get up so I picked him up and his IV came disconnected from one of the ports and his blood started running back up the tube which freaked him out, but then they couldn't flush it so they had to start another one. So needless to say he's been afraid to even move. He was real wobbly on his legs at first but is walking around much better slow but better. His neck seems better and he's holding his head ok, the big issue we are having right now that seems will require some therapy is with his left arm(and maybe right we aren't sure because of the IV he won't use it at all) he can't lift it up much higher than chest level, it doesn't hurt him to do he just can't do it. With help he can get it up there but has very little control once it's up. As far as other areas we will have to wait and see once he gets home. The damage to his spinal cord is worse than his symptoms are so there has been some concern that he could get worse before he got/gets better but so far so good. If you google what he has there is quite a bit of info on it but at the same time it's not really very detailed as to how or why it happens. Since all of his cultures have been negative they don't have many answers for us. It's rare and more rare for children. It's going to be a wait and see thing which stinks. Info I have read states there has been a correlation with AITM and later a diagnosis of MS but that is usually when there is more than one occurence of this. I feel like now we are going to walk around worrying which I of course hate! But right now he's getting better and will be home and we can start working on getting him back aclamated to everything again...moving around his arms and everything in general. There is also a chance he won't recover 100% of his strength and ability that he had before which is scary but again only time will tell, UGH!

Ok I keep getting distracted with him and the phone and etc etc so I am going to wrap it up...I will try to post some more details and what not later...really I think I have covered everything. He should be home tomorrow and on the road to recovery. It's been a LONG week!

TGIF

Yeah, yeah it's been a while...what can I say :). Robert was off all of last week which was very nice having him home, and he didn't leave out again til Wednesday and will be home in a few hours! We definitely enjoy having him home, but it does throw a kink in our routine a bit so my days get all mixed up.
We have been doing well, busy as always but not sure what exactly we have been busy doing! School and just running around I guess. Jakeb and I had cavities filled last wee. It was their (Jakeb and Zachary) fall break and of course they all had colds so we didn't really do too much as a family but I was able to get some things done I needed to and so was Robert. Robert has to leave out early Sunday morning which makes for a VERY abbreviated weekend which stinks but he will be home on Thursday of next week so he will get a long weekend next week.
Zachary and Gavin are still hanging onto colds this week. Poor Zachary has been pitiful, I took him to the doctor yesterday morning because he was complaining that his head hurt really bad, then it was his neck and overall just his whole body. He still isn't feeling well but we really aren't sure what is going on, doctor is suscipicious of viral menningitis because of the sorness in his neck and head but other than that he doesn't have the symptoms of it...no high fever and isn't acting REALLY sick. So we are just waiting and watching, which stinks but our only other otpion is a spinal tap and we really would like to avoid that if it's not necessary. Either way prayers for him that this is just something related to the cold he has would be MUCH appreciated.
Eh ok so I got interupted nearly 3 hours ago while trying to do this...and had to walk away so my mind isn't in it now, so I will have to try again later!